LymphBlog

A Marriage Journey With Cancer: Stuart and Candace Smartt 2009

2011-03-11T22:53:00.004-05:00

IVIg: The more things change, the more they...

2011-01-26T20:25:00.005-05:00

OK. So Monday reminded me quite a bit of 'the old days'. We woke before dawn and clumsily headed on the collection of back roads that lead us to Emory Hospital. We were late, which means we valeted. Went to the clinic, signed in, waited among all the sick and their caregivers.

When called back, it was a routine that I had followed countless times. While I was happy to be an outpatient and not checking in for the week, it ended up being a long day.

Check the vitals, weigh in. Get directed to the appropriate bay and chair. Don't forget to grab a hot blanket on the way over to your seat. Wait for the nurse, give your name and birthday to match your wristband and file, confirm why you're there.

Nurse places the IV in your arm. This was the first time I missed having a port.

Pharmacist comes over and offers a tutorial on IVIg. It is given based on body mass. One dose requires literally thousands of blood plasma donors. Not only do they need the diversity of donors, they also need that many to get enough of this stuff for one small dose. My dose is to be 35 grams. Mixed in a 10% solution, that means the bag will be 350ml.

The purpose of IVIg is to give someone a dose of the antibodies that one's own immune system is not producing. For me, I hoped it would mean no more chronic pneumonia and sinus infections, which have been the norm for the past 19 months.

The list of reactions that one can have reminded me of the chemo side effects. Anything from hives to a stroke. I was hoping for an uneventful infusion.

They pre-medicate me with Tylenol and 50mg of Benadryl, to preempt some minor side effects.

The infusion will start at a very slow rate, and then double every 30 minutes. They started. I napped.

I awoke from my nap shaking somewhat violently. Rigors, or severe chills, they are called. The last time I had these, I was in a similar chair, one row over... but that time I was halfway through chemo, neutropenic, battling an undiagnosed staph infection... and closer to death than I've ever been (medically speaking).

When the nurses saw me, three or four of them swooned over me. One of them immediately stopped the IVIG infusion. The other hung a bag of saline to hydrate me. Another walked up with a syringe of an additional 50mg of Benadryl. (If you've had a 50mg bolus of Benadryl pushed into your bloodstream, you'll never forget it. Well, I guess it's more appropriate to say you'll never remember it). Then 25mg of Demerol were pushed into my IV.

OK. Time to float away for a bit. The rigors mitigated in a few minutes. The nurses slowly faded away. After 15 minutes of feeling like Michael Jackson at bedtime, they came back over and re-started the IVIg infusion. They would knock it down to half the rate, and then start back on the same schedule of doubling every 30 minutes.

I made it through the rest of the IVIg dose and, after coming to my senses, I slowly stood up with the help of Candace and headed back for the valet stand.

In all, it was about a 6 hour 'episode'. Despite thinking I would be doing back flips on my way out that day, reality was a bit different. Since then, I've had some unenjoyable side effects, mainly fatigue, flu-like aches, headaches, dizziness. I missed a little work today to come home and rest.

I suppose we will see where this goes, but I'm scheduled to have five more rounds of IVIg- once each month.

Part of life is inevitably living through bouts of ill health. While I had expected to be more or less 'done' with cancer 20 months ago for good, I suppose cancer's 'collateral damage' is something that is still supposed to be part of my daily life. More to come when this plays out... I don't know what to expect next!

Anything worth doing is worth re-doing...

2011-01-10T14:32:00.003-05:00

I'm staring out the window at about 5 inches of fresh powder, capped off with a sheet of ice. We in Atlanta are paralyzed by the weather -- trapped in our homes-- so what better time to blog.

So my oncolgist at Vanderbilt who decided to do those 'new' tests over the Holdiay sent the results to my hem-onc here in Atlanta. When they saw this info, the folks here at Emory decided to re-do the same test in their lab.

I went in on Friday to bleed yet again into a number of tubes. The test results will come in any day now. The logic, I am told, is that they need to have a baseline in their labs if I am to start IVIG treatment under my care team here.

They confirmed that if the IgG levels are low (they tend NOT to fluctuate, so we expect they will still be low), they will then make a case to insurnace to cover the treatments. Apparently this is normal for such procedures.

Since the average IVIG patient costs $120,000/year, I am sure my insurance carrier will be thrilled to see little ol' me asking for them to spend even more on my care. I bet they thought they were done with me and were only having to pay for 4 CTs, labs, doc visits, etc. per year at this point.

The most common blood cancer patients that end up neeing IVIG infusions are the chronic leukemias (CLL) and some of the follicular (slow-growing) lymphomas. It is rare that a patient such as me with an aggressive lymphoma would need IVIG.

So far, everything has been flawless with respect to my healthcare coverage, so I expect no less this time. I am a huge fan of health insurance, disability policies, and life insurance so if you want to talk about any of these, just email me.

They would concur that six months of infusions would be appropriate, proir to a remeasurement of my levels. All of the infusions would be outpatient. Awesome. And, unlike the chemo, these would be infusions that would theoretically help me feel better as opposed to feeling worse...so I am giddy at the thought.

OK- back to staring at the beautiful white landscape: we don't get this treat too often.

19 months out... and the battle continues

2011-01-01T21:03:00.009-05:00

A quick recap: I had pneumonia in October and took an antibiotic for two weeks to address it. I slowly improved, but never really seemed to regain my energy. I got to 80% -- but never in range of 100%. This pneumonia came on the heels of chronic sinus infections and just an overall lack of feeling 'normal' for quite some time in 2009 and 2010.

On a Wednesday in mid-December, I woke with an acute achiness in my legs. While foot and leg pain is something that I've felt at some level every single day since chemo, this time it was very painful. I ached very intensely, deep within the core of my legs.

Things got worse as I felt more fatigued, got a bad cough, more congestion, and eventually decided that we had to see a doctor. Since it was a Saturday that I made this decision, we ventured to an urgent care clinic near our home. In the waiting room were half a dozen children between the ages of 4 and 6, looking like they had the stomach bug or strep throat... and me.

After the doc listened to my lungs, looked in my throat, & took an x-ray, he congratulated me on having penumonia again. This was 2 times in three months. Geesh. I told him that I have historically responded well in these circumstances to the antibiotic Clindamycin. He wrote me a script for that, as well as Lortab for my leg pain and sent us on our way.

As a side note, I've been told that pain medication is the only remedy for my foot and leg pain. I don't take these meds because they seem to give me a headache and make me loopy, and not really eliminating the foot pain. That's a poor trade-off in my book, so I wasn't really thrilled about his solution to the chronic foot pain.

So I took the antibiotic and waited for Christmas to arrive. While in Nashville visiting my family, I went to have a consultation with my oncologist at Vanderbilt-- the one who I met with two years ago just after my appendectomy and initial diagnosis, who insisted on additional testing... and ultimately saved my life by getting me on the right treatment path.

He is a great doctor: full of smiles, a gregarious spirit and deeply engaging. Upon entering the room, I promptly gave him a big hug. A small consolation for someone who saved this life. It was the least I could do.

Well after a good half-hour of listening to my post-chemo experiences, interspersed with him asking questions of clarification along the way, he offered some very good insight.

Before he began, he reminded us that aggressive Lymphomas, if they do relaps, do so "early and obviously". In other words, he did not think that I was showing signs of a relapse this many months out.

He asked if my foot pain was getting in the way of 'normal, everyday life'. "Yes, it is," Candace replied. She has a better perspective on this, so having her voice on these matters was essential. Sometimes I tend to gloss over things, minimize their severity... to round up. His response was that we should try Gabapentin (Neurontin). This is a seizure medicine that has an off-label use for nerve pain often endured by diabetics.

We would start on the lowest dose and see what happened. I am on day 3 of this medicine and will keep you posted on its efficacy. I am very excited that there may be a world without this chronic foot pain!

Secondly, he said that my chronic sinusitis and recurring pneumonia made him think there was something systemically wrong with my immune system. While my overall white blood count have been acceptable, there any many subsets of white blood cells that can be measured and have unique roles and responsibilies.

(As a reminder, my Lymphoma was a cancer of the "B" white blood cells, which are an essential agent in ones immune system.)

One of the chemo drugs -- Rituxan-- specifically targets these white blood cells, so that they can be killed during the chemo protocol. The problem, however, is that Rituxan can linger around in ones system as long as 18+ months after administration. Additionally, it causes harm to some specific parts of the immune system that may not be able to recover until it has completely left the bloodstream.

He suggested we run some targeted lab tests and also get a CT of my sinuses in case there was something structurally wrong. They took 10 viles of my blood and sent me to get the scan.

On my drive home from the hospital, he called to tell me that, while the scan looked ok, the lab results indicated my Immunoglobulin G (IgG) levels were 286, though the low end of average was 700. (Immunoglobulins, which are protein molecules that contain antibody activity, are produced by B-white blood cells, which you now know were the cells affected by my cancer.) Insufficient levels of IgG make one prone to... wait for it... respiratory infections-- e.g. pneumonia and sinusitis! This has been my 'norm' for 19 months!

Ironically, while my cancer was characterized by pathologically excessive production of white blood cells, this was now a situation of aberrantly low production of healthy cells.

The solution? He recommended that I get 6 months of IVIG (Intravenous Immunoglobulin) infusions. I will get a 'boost' of the very cells that the chemo has depleted. In 6 months, we will re-test and see if my body is better able to make these infection-fighting molecules on its own. (IgG can be obtained from plasma of other people. I am informed that it is in very tight supply nationally, and each transfusion includes the IgG of over 1,000 donors!)

The oncologist mentioned that insurance companies often do not cover these infusions and they are very costly (over $10k per dose). After consulting my oncologist here in Atlanta, we will make a case on why this is an appropriate treatment and see what happens.

Though we are still waiting for the rest of the lab results, this preliminary indication is very helpful. I'm grateful that this doctor listened and was able to shed some very valuable insight into my post-chemo journey.

Having an 'immunodeficiency disorder' is not typically something to celebrate, but I am thrilled that we are getting smarter each day as we continue to fight against cancer and the collateral damage that it brings.

More to come in the weeks ahead-- but for now: Merry Christmas, Happy New Year, and all praise be to Christ Jesus for all He has done and continues to do for little ol' me!

16 months out: a net positive

2010-10-14T11:30:00.002-04:00

Got my umpteenth CT scan (something like 10 of them thus far) last week as a normal course of post-chemo follow-up rhythm. Met with the Oncologist yesterday-- and got a clean report from a cancer perspective, but they did see a 'pulmonary nodule' which they suspect is pneumonia. They think it may be fungal pneumonia, but I am told by the oncologist that a CT scan doesn't provide enough info to call it fungal vs. bacterial.

Nonetheless, I feel like a pile of rocks and am taking the day at home to rest. I've coughed up some sludge that would be offensive to share via photo, so consider yourself spared.

I've felt achy for about 10 days now, and was starting to worry that something was wrong-- which seems to be a common theme coming into a scan milestone. Now at least we have identified the reason I don't feel good-- and it's NOT cancer!

Also of note was that I had my (second) chest port removed about 3 weeks ago. It was a great process, except when they were drawing labs prior to the operation they hit a nerve in my elbow. It lit me up light a light pole! Getting some residual zingers down my forearm, but I am told it will slowly heal. Matching port scars in my chest looks quite nice, and it'll just have to be my version of getting tattoos.

I am continually grateful to be healed of this illness. As you know, I have connected with a handful of Burkitt's patients over the past year or so and have been keeping in touch with people as they go through their journey. One of these young people I've come across, Brian Howell, died recently. He was mid-way through treatment, and things just started to fall apart, one by one. His wife Hayley is just trying to get through her days, without her beloved-- trying to re-learn how to spend her days and keep things afloat.

God's grace is all we have, and thankfully it's never-ending. Lord have mercy on us all.

1 year out: A CLEAN report!

2010-07-09T13:40:00.004-04:00

Had my CT scan last week (I think this makes 9 scans in two years) and got the results two days ago: No signs of lymphoma...still!

Passing this one year-mark is not just a convenient anniversary, but it also carries some clinical significance in that most people who end up relapsing do so in the first two years, and so I am more than halfway through that zone.

Even better, my labs look good! I am at the low end of 'normal' for all the areas that were damaged during chemo (namely white blood cells, hematocrit, hemoglobin, platelets). Not only am I feeling more normal, I'm also starting to ressemble one on paper.

What does this mean? Well I am planning to get my chest port out at the end of the summer and will need CTs once every 4 months, as opposed to 3. A small, but meaningful, improvement in hospital visits and incremental radiation.

I met a few weeks back with the neurosurgeon who installed my brain reservoir and he said there is more risk in pulling it out than leaving it in. He said I can get brain hemorrhaging or menengitis... so why risk it. For now, and as long as I have hair-- I'm indifferent. I don't mind a permanent reminder here and there.

It's all good on this end... thank you, thank you.

9 months out: A clean report

2010-04-14T23:13:00.003-04:00

So Dr. Flowers (I can no longer associate him with Tiger -- oh, how much has changed) came in and cut right to the chase. "Your scan looked good," he said, with his borderline awkward indifference and focus-less stare.

Wooo hooo.

At this point, my platelets are a little lower than yours, but they are not low enough to worry. Hope I don't cut my knee on the playground this weekend.

Otherwise, my liver, kidney, red blood, yadda yadda yadda function all look good.

He said I can meet with the neurosurgeon about getting my USB port out of my skull. No more awkward cowlick.

I celebrated with... you guessed it: fish tacos. Well, I did a pre and post celebration, both with fish tacos. An addict, I admit.

After getting the good report, I walked across the street to the main hospital where I spent my 45+ nights over 8 rounds of chemo. I sat with my buddy Khadar Hassan, who I came to meet right after he was diagnosed with Burkitt's. He is 22 and from Somalia.

This guy is a fighter. Like me, he got a nasty Staph infection during treatment, coincidentally also after his 4th round of chemo. Though I was in the hospital for a week getting pumped up on antibiotics, getting my port ripped out, having blood cultures and a 104+ fever, he was in for two.

They got the MRSA under control, and started round 5 today. What a fighter.

While I am honored to be on the back side of such a hard fight, I don't stray too far from what it's like to be in the bed, flat out on my back, getting pumped full of toxins.

Khadar is in the thick of it, and I yearn to walk through that valley with him in whatever way I can.

I also met an 18-year old named Austin Saunders in the clinic who was laid out on a bench with a pillow over his head. An anxious woman sat beside him, rubbing her bloodshot eyes.

"Lumbar puncture?", I inquired.

"Yes," she murmured softly. "He has a rare non-Hodgkins Lymphoma and just started chemo last week."

My heart sank. That was me! The very same thing! Laid out, miserable, ready to give up, though things had only just begun. I was right there on that bench beside him, in my heart.

Poor kid was throwing up every 3 minutes. I am that kid.

I made every effort to console Mom and tell her some lessons learned from the road I had ventured only twelve months prior. I jotted down my contact info and offered prayer and whatever practical support I can provide. I sure hope they call.

Lately, I am playing tennis, exercising, eating well, and joyfully employed. God is so merciful.

Lord, please don't let me forget that I am one breath away from being on the other side of this thin veil of good health. Oh, my.

Daily bread.

2010-04-04T22:30:00.003-04:00

I am prone to spend more time worrying about the future than I should. If I really do trust that Jesus is Lord over my life, has conquered death and all fear, then what's the hold up?

A thought came to me this week about the concept of daily bread. We are instructed to ask God for our daily bread. Manna was gathered up daily, for that day only. Any 'extra' provisions would go bad and ultimately become useless.

So if each morning, before I roll out of bed, I ask myself, "Do I have enough to get through the day?"

"Do I have what I need to make it until I return back to this very same bed, at the end of the day?"

The answer is simple. It's 'yes'. It has been 'yes' every day thus far in my life. The answer this morning, was also 'yes'. Tomorrow? Well, I'll know come tomorrow morning what the answer is, but I am fairly certain the answer will continue to be... 'yes'.

As I consider only the very day in front of me, I need not worry about having enough bread for future days. Of course this doesn't mean I am to squander all that I steward in a profligate way. Rather, it simply means that I need not have fear, anxiety, concern or worry about whether the bread will last beyond today and today alone.

The Lord has promised to be faithful in giving us our daily bread, and so I'm not going to keep doing my best to ignore this promise in worrying about some distant day that may never come.

I'm a 'yes' today. I'll get to tomorrow when it gets to me.

Four months, to the day: that should be enough of a hiatus

2010-03-22T14:49:00.006-04:00

So, at the nudging of my wife, Candace, I am going to fire the blog entries back up. I had felt for quite some time that this blog would be limited to my experiences with and during Cancer, but it seems that my short-term memory isn't conducive to living life completely apart from some sort of chronicle.

Too, I suppose that every part of my life in some direct or indirect way really is connected to this life-altering (and sometimes ending) illness. My prior life was B.C. where the 'C' stands for Cancer, of course.

What's more, in one of our perennial Spring cleanings, I stubled across a sprial notebook that appeared to have been collecting dust for decades. Sure enough, it was (one of) my previous attemtps to white-knuckle a regular and consitent journal. As with every other attempt before and after, it devolved into one or two daily entries and then hundreds of empty, unmarked sheets follwing it... with nothing noted, nothing remarked upon.

It seems as though there was something magical (that's probably not the best word) about the days leading up to the sole journal entry in this notebook, but it was nonethless life-changing for a 7th grader. I will dig it up and post it, verbatim, at a later date... if nothing more than for your pure entertainment. (Turns out that, if you get past all the melodrama, even pre-teens can have some pretty profound thoughts.)

Getting to the point, it was a reminder that we go though all kinds of experiences, both the meaningful and mundane, and if we do not stop to reflect on them, they can easily be integrated into who we become without a trace.

That's me. That's what I'm good at. Ask me about pretty much any part of the last 32 years, and I can't tell you much. Weak! But in spite of this dearth of communicable information, I am unavoidably the sum total of every single experience up until this very moment.

So firing back up this blog is my puny effort to memorialize life as it happens. I will do my best to spare you the details of what I eat for breakfast or what my cat does, that is, unless he demonstrates more acts of genius as he sometimes does.

I can think of a few things that have already happened in the prior four months that are noteworthy... namely being convinced of a relapse, some lingering medical anomalies, baby steps to physical recovery, ongoing fertility challenges, a faith-fortifying trip and a few really amazing fish tacos. Oh, wait... no meal-centric blogs. Sorry.

If you (anyone) in cyberspace ends up taking a read, thank you. If not, this will be fodder for my descendants one day, at a minimum.

Video - Stuart and Candace 2009: A Journey

2009-11-22T21:23:00.011-05:00

CLICK HERE TO SEE VIDEO IN YOUTUBE

So when my best friend turned 40 this weekend, he had a great big party. It was amazing. It was a talent show, whereby all his friends would get up in front of the crowd about nearly 100 people and perform a song, video, dance, skit, act, or otherwise unique talent. The cake, the people, the food, the event-- everything was just delightful.

Well, toward the end of the party, I was caught completely off guard when the next video in the lineup started with my name on the screen... and a comment about my cancer.

Then, as I realized what was happening, my whole body went numb. And has been numb ever since. I've been at a loss for words to fully describe just how special this reverse-gift was to me. I had been tricked. They had taken all the chemo video footage, which I had never seen, and put together a chronicle of the entire experience.

What's more, they included some footage of our wedding day over six years ago. I have never seen video from our wedding -- so it was like getting married all over again. I melted when I saw Candace's expression as she walked down the aisle, with her late father.

So why would someone take a milestone birthday party in their honor, and devote all of their precious time preparing a gift for someone else at the party? I just don't understand this kind of selflessness.

This video manages to capture an entire year of emotion and healing in one sitting. I have lost count of the number of times I have watched it.

Shane and Kelle, you two are most thoughtful and dear to me and my wife. I love you so much.

I'm posting below my wife's response to this video, as it captures what my numbness has thus far precluded me from being able to articulate:

"It is 2 am and we just watched the video for the 5th time. We have cried and laughed and kissed and hugged. We are in awe...we keep saying, "I just can't believe it....I can't believe all this is on this video".

There are so many emotions - I can't even process them all now.

When you walk through something hard, you just walk through it. But, when you have a chance like this to go back and revisit that hard time - it takes your breath away.

How did we do that? How did we get through it?

The video did a beautiful job of answering that question.

God, family, friends, some tears and some laughter and our love for each other.

And then our wedding... wow. I think I was the happiest girl in the WHOLE WORLD! You can see it on my face.

And my dad - right there...walking, touching me, smiling. I crave so much to remember him - his walk, his smile, his sweetness. You gave me that tonight.

There are no words.

This is THE BEST gift anyone has EVER given us. EVER. There is no way we could ever outdo this one.

It has been a very sad week for us. Shoot - it's been a sad couple of months. I have felt forgotten by God...confused by Him...unsure of Who He is and why things happen...I have not felt him close in a while. But tonight - this video - reminded me.

It reminded me that He is close and He has a purpose and He is weaving a beautiful tapestry, a story of the Smartt's, that no one could ever imagine in their wildest dreams.

It reminded me that His glory and good will come out of all things.

I needed that. This filled a place in me that was very empty.

Thank you. Thank you. Thank you....a million thank you's...

And all this on at YOUR birthday party.

We love you crazy Ortizs.
You bring life to us.
Thanks for being our friends and thanks for one great party."

It has been a year...

2009-11-19T18:22:00.002-05:00

Today is the day... one year ago. Whew. We made it!

It's a good thing that we can't see into the future of our lives, otherwise we'd be left to process -- all at once -- the joy and anxiety of everything. What a waste that would be! No, thanks. I'm happy with the day-by-day approach. (I say this as if I have a choice...)

Yet I don't feel great, I do feel gooooood enough. And for thank I am so thankful. Many, many days in the last year were pretty rough, as you know.

I'm having a challenging time doing this 'reflection' that I had hoped to do. Perhaps it's the steroid I'm on? Either way, the impact is still a story unfolding as we go.

I confess that I did honk aggressively at someone on my hour-long drive home today (for blocking traffic while they made a left-hand turn out of the far right-hand lane!). That's the barometer: I must be hardening up formidably. Dang it.

But tomorrow I will go to Emory to get my port flushed, and I hope to be reminded of my parole status once again so I can shed a layer or two of this hardness in the process. Such a predicable creature, I am.

My friend is putting some chemo video footage together that I hope to post to this site. I will be the pale, puffy one you see.

Well thanks for hanging with me this past year. Whether you've read this site once or weekly, I am honored that you shared it with me.

I felt lifted up and supported by so many.

Thank you so kindly.

ENT, BKO, and 1YR...

2009-11-11T09:31:00.002-05:00

Had a visit to an ENT yesterday at Emory to further diagnose my chronic sinusitis (Oto-rhino-laryngologist). I must admit, I don't really enjoy seeing cross-section diagrams of what's anatomically going on inside one's throat and head. Seeing all the cavaties and tissues and bones kinda weirds me out.

Nonetheless, I had to be there. I sat in the chair for quite somet time awaiting the ENT doc. When he came in, he immediately started grabbing 'tools' out of his drawer and throwing them onto the counter - one by one. No room for chit-chat here. Even though there was no real bed in the room, his bedside manner was lacking.

He probed some metallic holepuncher-looking device into each ear and made a 'hmmpf' sound. Then grabbed my tongue with gauze and stuck a mirror to the back of my throat. 'Say ahhh.' I tried, but gagged. He commented on how I had a sensitive gag reflex. Thanks, doc. Could've told you that.

Then he fired up an electronic machine and said he would spray something up each nostril to numb it. And that it does not taste good. Felt like someone blowing up each nostril with chemical-breath.

Then he said he was going to take a look. Jammed some sort of little camera up there on a flexible line. Geesh. 'Hang with me, hang with me. A little swollen in there,' he said. The sensation was... unenjoyable.

So he said I needed more antibiotics, this time to be combined with a steriod. Only then would he know if I needed surgery. Keep in mind that I've already been on three rounds of antibiotics for this... so this will make four. Given that I have some side effects from the steroid used during the chemo, hearing this prescription made me ancy. MORE pills? MORE drugs? Hmmmm. I dunno.

I am supposed to take three weeks of Augmentin (AMOX/CLAV) coupled with a round of Prednisone and then return for my zillionth scan.

Trying to keep a positive attitude on things... but as you may be able to tell, I'm pretty much ready to be done with this!

'BKO'... My employer is in Ch. 11 bankruptcy, still, but fortunately there's no additional drama to report on this front. I marvel daily that I have a job at all, given the 17.5% unemployment/underemployment rate. WOW.

Tomorrow is the one-year anniversary of this roller-coaster. It was Nov 12th, 2008 that it all started... the stomach pains, the emergency appendectomy, the diagnosis, the re-diagnosis, the chemo...

It's a year that has flown by, nevertheless. I am compelled to reflect on the past twelve months -- and see if I'm able to assess just how I feel about it, and how it has affected me and how I view life, faith, and the world around me. I'm not naturally prone to do so, so I will force myself in the coming days!

Projectile...vomiting?

2009-11-04T20:42:00.002-05:00

So *that's* what they mean by this choice of words.

I got hit hard around 9pm last night with some projectile vomiting and relentless diarrhea (sorry if that's not PC). I had just downed a nice dinner and come home, when it all came back up. (Any chance I can petition for a refund?) And I mean ALL of it-- lunch, too. It was a long night- marked by fevers, bathroom trips, tossing and turning. $40 bucks... down the toilet. Literally.

For obvious reasons, I stayed home from work today. Been laid out on my back all day long. Brought back memories of chemo life.

Tried to nibble on a piece of toast -- bad idea. Bouts of vomiting were almost instantaneous. I did manage to pull off a deft move whereby the vomit was mid-air over our carpet and I grabbed the trash can and caught it just before things got completely ruined. I have lost 6 lbs in the past 24 hours. Who knew weight loss was this effortless!

I will say this: despite this being no fun whatsoever, it sure does beat a normal day during chemo. Allllll relative, my friend!

My employer is now officially in Ch 11 bankruptcy. TIme will tell what this will eventually mean, but for now -- I am still employed!

2009... who could've predicted the excitement!!

Watching game 6 of the World Series through one eye... while I nap with the other... lovely evening!

A camera-shy cat...

2009-10-25T15:50:00.003-04:00

So whenever the camera is off, Dude acts in his normal, peculiar ways. But when it's action time and the camera is rolling, he pretends he's a normal cat. Still trying to capture him doing his quirky things. By the way, ever notice how many cat videos there are on YouTube... and better yet, how each of them seem to have millions and millions of views? Huh.

I am feeing pretty good! About 80-90%, I'd say!

The nerve pain in my feet is slowly improving... and I even spontaneously jogged across the church parking lot today when two little girls were chasing me down. It was epic, relatively speaking.

The docs put me on an antibiotic called Omnicef for 21 days, as well as the steroid nasal spray Flonase, to see if that clears up my sinusitis. Things are better, but far from fixed. Same with bowel problems... gotta diagnose that one further. We've been trying to experiment by removing dairy and/or gluten from the diet, but that's HARD to do!

THANK YOU for checking in!

A clean scan! Three months down...hopefully a long lifetime to go...

2009-10-14T11:16:00.005-04:00

Just back from my doctor's appointment at Emory. The CT scan shows no signs of recurrence of the cancer. Candace and I are elated!

The good news doesn't stop there: my white blood count (my immune system), which had been at 1.7 and then 2.0, jumped all the way to 7.4! The normal range is 4.2 to 9.1, so I am smack-dab in the thick of it. While my platelets dropped a little, they are not in the critical zone and this type of drop is less of a concern than my whites. Other counts looked great: Hematocrit (46.7%), Hemoglobin (16.5), RBC count (5.04).

I'm going to get scanned in three more months, and hope for the same result. In the meantime, I have to get a CT scan of my sinuses this Friday, as I've had chronic sinusitis for several months now. I will see an ENT doc to try to figure out what's going on. Since my bowels have been a bit unpredictable (read: irregular and irritable), I am probably going to have to see a GI doc. The sinus and bowel 'problems' are minimal in comparison to the good news related to recurrence and white blood counts!

God has carried me through some fearful nights this past week. All the scenarios running through my head of a possible relapse were playing like a double-feature in my head. At one point, I even remarked that this post-chemo period has been more challenging from a fear and trust perspective, as one fully expects to feel crummy during chemo... but not for months and months after the chemo has ended.

I walked the Light the Night event this past saturday and, of course, didn't take a camera. My feet were burning in pain, but I completed the entire 2-mile walk and enjoyed it thoroughly. Each person was a given a colored balloon: Red for family/supporters, white for patients/survivors, and gold for a lost loved one. There was a sea of red balloons, a few white ones, and many gold ones. Lots of people don't make it. Like Richard. I walked with him in mind, and his name written in marker on my shirt. It was a moving event.

My employer is still on the verge of a major restructuring, or bankruptcy. This is great news. Why? Because coming 'back' to work has been such a nice thing, given the temporary holding pattern we're in. Whenever I feel unproductive or like I'm not 'where I need to be in life', I am reminded that there could've been NO BETTER TIME IN MY LIFE, or even the series of world events, for me to go through chemo and recovery.

The opportunity to see the 'good' coming out of this, and the invitation to give all glory to our God, abounds at every single turn in the road. I am so, so grateful.

Next post to include a Dude (cat) video. He is working on a trick that he wants to share with you.

CT Scan, a new friend with Lymphoma, and a smart cat...

2009-10-07T17:00:00.006-04:00

So I had my three-month scan today. Not a PET/CT, but a standalone CT that covered my skull, neck, chest, abdomen, and thighs. I had the tasty two bottles of barium contrast, and also got the IV contrast this time -- which was a first. When you're in the middle of the scan and they inject the IV contrast, it sends a burning hot sensation up your arm, and then into you chest and abdomen. At one point, I thought I had gone to the bathroom on myself, but fortunately it ended up being just a mixed signal to the brain somehow.

The scan results are in, but I won't know them until I sit down with 'Tiger MD' next Wednesday morning. Why rush it? Won't change 'em...

On a less enjoyable note, some close friends introduced me last night to a guy who was just diagnosed with Lymphoma. After speaking with him for what will be the first of many, many conversations to come, I hung up feeling a tinge of anxiety. It was almost as if I was reliving the uncertainty that comes with this sort of life-changing new information. He, like me, is in his 30s, lives in Atlanta, is married and has no children at this point.

I asked him to read me the details of his pathology report. He has been diagnosed with the same Lymphoma as I was initially diagnosed- diffuse large b-cell. Similarly, two oncologists told him to get started with R-CHOP. When he read that his Ki-67 stain, a measure of the proliferative rate of cancer, approached 100%, I insisted that he ask his docs to tell him why he DOESN'T have Burkitt's. For me, the corrected re-diagnosis to Burkitt's from a plain vanilla diffuse large b-stell was only possible after additional testing was pursued. I am very curious if they will request that same additional testing in order to rule out -- or in -- Burkitt's While I certainly hope it's not Burkitt's and that he is able to pursue the less toxic chemo, it will be quite ironic if his experience parallels my own in this aspect. I'll keep current with him, without a doubt.

On a final note, I am very fond of cats. Probably borderline 'cat whisperer'. I try to sweet-talk stranger cats I meet on neighborhood walks, and tend to take pause and consider what to do when I see a mangey dumpster stray scurrying about. So we have two cats-- Dude and (Fat) Mama. Dude is a very needy and loving cat. He meets you at the door, follows you around the house, and insists on nibbling on your ear when you are seated.

I rarely lose my keys. I tend to put them in the same place on the countertop every time I come home. Last week, I had a problem: I lost my keys. How was this possible? I looked in all the likely places, but had no success in finding them. After starting to wonder how in the world I'd find my way out of the predicament, I looked over at Dude, who was sitting still, watching my fruitless search.

I inquired aloud, "Dude! I've gotta find my keys!!"

Though he normally doesn't meow excessively, he let out a long, awkward, labored cry. "Merrreeoooowwwwoooowwwoww."

As he let out this protracted sound, he walked a few steps across the room and rubbed his body against a bag of dog wee-pads (don't ask) that was opened and mostly full. My eyes, as they made contact with his, saw a slight metallic reflection nearby, peeking out from in between these pads--- IN this bag.

Of course. He was showing me where the keys were. He had known all along where they had fallen, out of my pocket several hours earlier that day.

I had to take pictures to prove it -- because it was certainly absurd. Even better, my wife Candace witnessed the entire episode. See the keys hiding in there??? Thanks, Dude!

Counts are... sideways with an uptick!

2009-09-25T16:36:00.002-04:00

Just got back from Emory where they drew more blood and ran some tests. The white count is now 2.0, up from 1.7.

The upward direction is good news, but they are still low enough to watch a bit more closely. I will get word from the doctor on Monday regarding how he wants to approach things.

I am grateful for so much. I am saying that mostly to remind myself of this. How easy it is to be at '80%', and focus on all the things you're missing out on within that last remaining 20%. Why can't I focus on all the amazing improvements captured in that 80% and just let the 20% come when it will? I'll try to do so.

My wife is soooooo beautiful. I am a lucky man.

Counts are down...

2009-09-18T11:22:00.003-04:00

My bloodwork this week revealed that my white blood cells, i.e. my immune system, is low. In fact, it's unfortunately in the 'critical' range (1.7 vs. 4.0 the last time I was tested). This isn't a good thing, especially since they were trending upward since chemo ended.

They suspect I have a virus of some sort, but are going to see if my body can fend for itself.

I am scheduled to go back in for more testing next Friday.

Getting this news, coincident with Richard dying, has left me a little numb. But I strive to lean even harder on the peace that is present, abundant, and available to all of us through the overwhelming love and tender care from God Himself.

A loss.

2009-09-16T21:31:00.007-04:00

My friend Richard died today.

He and I met while we were getting the chemo at the same time from the same doctor for the same cancer at the same hospital. He and I shared stories... both good and bad... that only someone going through the same circumstance could appreciate. He and I are the same age, as well.

I was actually across the street at Emory getting blood work today when he died. His father called me right after he died and told me that Richard had been doing well, but all of the sudden, the cancer took over and consumed his bloodstream. It only took a couple of days for the wheels to fall completely off the situation.

While I knew all along that this cancer could and can kill me, it had not really hit home until today, right now. There is something impossible to explain about all of this. It's like going down in a plane crash, whereby one person lives and the person sitting in the seat right next to them doesn't make it. I really can't make sense of it.

On Day 99 of my blog (April 6), Richard left a very kind comment that I will cherish for years. His screen name is "BlackGTO" in case you care to go read it

He wrote, "Maybe at some time in the future we'll be in at the same time, and I'll be able to stop in and say hello, or walk a lap or two with you. Without your knowing it, you and your wife's faith have helped me beyond words, my friend."

I felt honored when he wrote this. Now that I see the wake of his death, I am even more honored to have met him and shared this part of our lives together.

Here are some photos of Richard. One right when his hair started to fall out, and the other showing off his brain port scar. God bless Richard's family. I take comfort in knowing that Richard loved the Lord and is in His arms this very moment.

Beach!

2009-09-15T19:07:00.001-04:00

Follow-up lab work, and a taco testimony...

2009-08-24T11:34:00.006-04:00

Went to Emory last week for some blood work, a port flush, and a chat with my hem/onc (Hematologist Onlcologist).

The lab work was good. No red flags. While my platelets are still low (110, vs a range of 150-400) and my white blood cells are 4.0 (vs a range of 4.2-9.1), the other key levels are fairly average. My Hematocrit and Hemoglobin are 43.1% and 15.5, respectively. This means I don't get winded walking up the stairs anymore!

While I still have the two pieces of hardware installed (one in my chest and one on my skull), I hardly notice they are there. I hope they let me keep my port after its removed so I can wear it on a chain around my neck. Oh, so cool. And gross.

Dr. Flowers told me that my lingering side effects are ok and not cause for concern. I am still congested daily, have severe 'foot pain' and numbness, and a lack of energy. He reminded me that some people don't feel normal even after 12 months after chemo, and for me it has been only 2-and-a-half.

This past Saturday, Candace and I were sitting at the bar of my favorite restaurant (Taqueria del Sol) eating lunch. As the bartender brought our bill, he paused, looked me in the eye sincerely, and said, "Man, you are looking so healthy with hair and everything. It was really great seeing you come in here during treatment and braving being in public. I mean, it must've been really hard getting that news and going through everything. I don't wanna sound all sappy or anything, but I guess just seeing you in here made me, I dunno, less... afraid. So thank you. I'm Andrew, by the way..."

We sat there, in awe, of the wonderful testimony that he had unknowingly just shared. The Lord does amazing things through us, even when we don't know it, eh?

It's a reminder to me that we don't have to be explicitly DOING anything in order to influence the lives of others and make changes in a positive direction. People are always observing, even when we are silent.

In the end, it's evidently a undisputable charge to all of us to be a living witness to the greatness of Christ and the love, grace and mercy that He is to everyone, whether they know it or not.

What He has done for me, He has done for you; He has done for us.

Back in the saddle at work...

2009-08-10T10:26:00.003-04:00

Well today marks a formidable day in recovery, as I went back to work at my physical office location. My business casual clothes feel a little tight in the waist-- what's up with that?? As you know, my emlpoyer is going through a rocky time currently and so the future of my role here is uncertain. The few of us who are left in the office just stare at each other, shrug our shoulders, and say that time will tell. It's quiet... kind of like a library.

My side effects seem to want to continue to linger. I won't complain about them, lest I come across and ungrateful or naggy... BUT, the recovery process is slow and not always linear in direction. I find that I'll feel better, then worse, then better. Right now, I'm on the worse side of the curve. Feels like I've got a cold or flu. Achy all over, especially the legs. Congestion all day, every day. Coughing up yellow stuff pretty much every day since May. The fatigue is still palpable and makes me want to nap whenever I can.

Enough about me. My limitations are trivial compared to both how I was for most of this year, as well as the current condition of two of my close friends. These are the two I mentioned in my last post.

I don't know too much detail on either, but I do know that my friend here in Atlanta is hospitalized and not doing well. He is experiencing tumor lysis syndrome, whereby the breakdown of cancer tumors causes major problems in the kidneys and bladder. The uric acid gets too high. He had nine rounds of chemo, including some more toxic than hyperCVAD, and the Lymphoma is not responding. As a reminder, one must first get into remission before a stem cell transplant becomes an option.

This could've been me. It could still be me if I relapse. There's no logical differentiation between him and me. We are the same age, live in the same city, had the same rare cancer, and yet he is in the hospital still fighting on the front lines, and I am sitting at a cozy desk in a suburban office building. I don't get it. I am heartbroken for him. We need a miracle here.

Day ###: I quit counting...

2009-08-02T22:29:00.005-04:00

So I am no longer tallying up the days since my first treatment commenced. I think that's a good sign. A lot has been happening over the past few weeks, but clearly blogging has not been one of them. My apologies for those who returned for a read!

Here is the rewind: beach, bankruptcy, and role reversal.

We did indeed head back to Destin for a few days... the beach where Candace and I met on August 14, 1998. It was a much better trip that time, as I was able to soak it all in and enjoy foods that were banned last time around. I started a new habit: reading books. I've never been much of a reader, but now it's time that shortcoming go away. I mean it. I *hope* to mean it. So I read a book by Ravi Zacharias, a well known Christian apologist of Indian ethnicity. I also read a book on human trafficking for the sex trade. This book was eye-opening and really fired me up. I am still trying to figure out a way I can go save some of these young girls myself. Grrrr. Other than reading, we did a lot of eating and relaxing. Just what the doctor ordered.

While at the beach, my employer, CIT, was on the ropes and within hours of filing bankruptcy. It was all over the news for about three days straight. We had an all-employee call where one person asked, "will we get paid next week?" The reply from leadership was, "We *think* so." Things are starting to get really exciting! Fresh off chemo, and now it's time to either find a new job, or new career, possibly. Fortunately the economy is strong and unemployment is very low right now, right? I've been under a rock, so I wouldn't know any better.

While we received a financial lifeline as a company, it may or may not last longer than a few weeks. This will be a fun one!

As for role reversal, Candace got an elective surgery last week and has been recuperating ever since. I got to play caretaker for a while. She says I make a great 'house husband'. I am glad I got to hone my skills a bit more. She is feeling better and better, so the roles aren't so reversed any more. It was fun while it lasted.

On a final note, there are two friends who also had Lymphoma who are not doing so well. One is here in Atlanta. He was one of the fellas I met at Emory while going through my treatment. His cancer has not responded to hyper-CVAD, and also did not appear to respond to another chemo, IVAC-R, either. They are now strongly suggesting he get a stem cell transplant. I am heartbroken for him. Why does chemo cure some and not others with the very same cancer?

The other friend is in Texas. She was diagnosed with Lymphoma about a year ago, and eventually went into remission. This past week, she had some throat soreness checked into, and they found a mass under her sternum that cannot easily be biopsied apart from a major procedure. There is also a growth on her voice box. They aren't calling it a relapse at this point, and we're all holding onto hope that it isn't.

DAY 193: A milestone...

2009-07-08T21:49:00.005-04:00

CLEAR SCAN! COMPLETE REMISSION!

There is currently no evidence of disease in my body. I spent the entire afternoon with close friends, just hanging out and laughing... in a de facto celebration. It was great. This was wonderful news to hear today.

If you now gave me two options- one: to have been healed instantly last November, with no chemo, and to continue to walk in daily life; or two: to take the path I actually did, which involved a miraculous healing over six months of painful chemo, with all the ups and downs included, new experiences it brought, with all its fears, comforts, and lessons learned along the way... I would still, today, choose the latter without hesitation.

The trade-off is clear and compelling. It was a great path to take and I am eternally grateful that I have been healed.

A massive dislocation of 'normal' life, but well worth it. All 193 long days... and counting.

Through apparent suffering, my faith has grown immeasurably... and it is still evolving. The dust has not yet settled, so I still do not know the extent of the change that has taken place in me.

But I do know... it's time to LIVE.

DAY 192: Looking forward to DAY 193...

2009-07-07T16:12:00.002-04:00

Tomorrow I will get my scan results. This will be a huge milestone to confirm that the treatment was successful and we've turned the page from treatment to 'maintenance' mode.

My hair has continued to come in... including whiskers (half-beard, still!), eyelashes, eyebrows, and scalp peach fuzz. I didn't anticipate that such a minor change would carry such a big weight: I look at myself and don't see myself as a recent cancer patient; rather, I see myself as a normal, healthy dude with a really short summer buzz cut. It's a nice change.

Still not able to play softball, due to those darn weak legs... but I am close -- I can feel it!

Update tomorrow after the Emory visit!

DAY 184: PET/CT today...

2009-06-29T11:39:00.002-04:00

I am fasting in preparation of my PET/CT at 2pm today. The goal of this scan is to confirm that there is 'no evidence of disease' in my body. It will become the baseline for all future scans and a confirmation that the chemo eradicated the cancer.

In the mirror last night, and in just the right light, I saw little baby blond eyelashes and eyebrows starting to bud! Also getting a lot of peach fuzz on my chin and head! This is very exciting, since I have less hair that most newborns at this point. Very curious to see how things come in... but am thrilled that there is life within me, pushing things outward! Yes!

It was a beautiful but hot weekend and Candace and I spent a lot of time outdoors. Since I will be at an elevated risk of skin cancer for the rest of my life (aww man!), I have to lather up with 50 SPF pretty much everywhere. I managed not to get burned, but I can tell that my casper-white skin is very sensitive to the sun's rays. I love being outside, so this will be interesting...

Still getting my energy back slowly, but had to take a few days off from the YMCA. My legs made me do it. They are soooo sore-- feels like cramps in my calves. I guess this is a good sign, so I'll keep pushing it.

Candace and I are thinking about St. Augustine, FL for a possible mini-vacation before I return to work. Anyone who has been there, feel free to chime in on advice/reactions!

Happy summer to all!

DAY 178: Baby steps... and many of them...

2009-06-23T16:43:00.010-04:00

I have been on the up-and-up for a few days now! No more masks in public, no nausea, no sleep problems, no bone pain, no dizziness... you get the point. I only have two lingering distractions: a little numbness in my fingers and toes, for which I am taking a B-vitamin complex, significant overall fatigue/weakness, and some throat congestion that won't seem to leave me alone.

It's time to start rebuilding my strength so I made a commitment to go to the YMCA every day. I started this yesterday and had the goal of walking for 15 minutes. I'm not talking about speed-walking here... just slow walking.

After three minutes, I started to feel my legs quiver. After five minutes, I was about ready to fall over. I limped the last few minutes, but was able to keep going for all 15. My pulse was 140. I'm going to measure it each time, to see how it (hopefully) drops. Most people don't get a pulse of 140 without some sort of aerobic activity!

Today, after my walk, I sat on the exercise bike for a few minutes on zero resistance. Felt pretty good! I think I'll work that in.

Still not able to jog or run-- which means no softball-- but I get just about as much pleasure as an onlooker in the meantime.

Over the weekend, Candace and I were able to drive to Nashville (my home town) and visit my family and a close friend. It was great: it had been six months since I've been able to do any sort of travel. I love Nashville. What a great town.

My two Burkitt's buddies are still in the thick of it: one started his 5th round today, after having to endure another re-admission delay due to low platelets. His first child is due any days now. Whoa. The second guy just completed his 8th round and will need one more. He started with 2 rounds of R-CHOP (which did nothing), then got 3 rounds of hyper-CVAD (which did nothing) and then got put on a new regimen called CODOX-M/IVAC-R. This is the big leagues of chemo so please pray that he gets into remission and does not need a stem cell transplant. Both of these guys are real troopers and I am honored to keep in touch with them as they finish out the battle with the beast.

I am trying to figure out just when I'll be able to go back to work full-time. I could probably work part-time in the office right now, but getting on a plane or working all day, every day, just seems a little daunting given my low energy. I need to be reminded that this down time as I feel increasingly better is time to be cherished, as it may never happen again! I know, I know... just being stubborn and want to 'keep moving'!

Here are some photos... just for fun.

PS- looks like I'll get a PET/CT scan sooner rather than later, after all. The doc wants one. Hope it's all clear, as we'd expect.

DAY 172: Counts are UP (again)!

2009-06-17T21:58:00.004-04:00

So we spent about 30 minutes of quality time today with Tiger Woods, MD. We asked all the questions we could think of: how long will the ports stay in? When will I get scanned? Will the neuropathy last forever? What about the leg fatigue? What's causing my congestion? How often need I return to the clinic? Yadda yadda yadda.

I will keep my chest port in for about a year. The brain port can come out in 3-6 months. I will get my baseline post-chemo PET/CT scan in 3 months. The neuropathy should slooooowly improve. The leg fatigue is mainly from the high-dose steriods I had to take and he encouraged me to try to walk 15 minutes each day, adding 5 minutes each week. We took a chest x-ray to see if the congestion is pneumonia... but I doubt it will be. I have to return to the clinic once a month to have my chest port flushed with saline and heparain. Sounds easy enough to me.

In addition to this chat, we got blood work and learned that my counts have come up nicely since last week! He was pleased, as were we. (Whites at 7.9, Hematocrit at 31%, Platelets at 98k). The latter two levels are still low, but they are trending in the right direction!

DAY 166: Counts are DOWN...!

2009-06-11T12:53:00.001-04:00

So my white blood cells, platelets, Hematocrit, and Hemoglobin all took a sizeable drop from Tuesday to Thursday this week. I guess this is what they mean when they say that recovery is gradual and takes time...

I guess I will have to just take it as it comes!

DAY 165: Counts are up!

2009-06-10T11:32:00.003-04:00

Even though my softball team was handed a 10-2 decisive loss last night, I learned yesterday that my white blood cells have come up to 5.9! This means I am no longer neutropenic and have made it through my last nadir period!!! YES! A huge milestone. Only one infection back in March and none since.

Today, I woke up feeling somewhat 'normal' -- whatever that means. I feel now more normal than I've felt in 6 months, for sure. I am having to resist the urge to dive back into normal activities right away. I tend to get bored very easily, so I'm already getting the itch to fill my time with work and 'stuff' to do. Not sure how long I can hold out!

Funny -- when I felt horrible, I had no problem sitting still all day and being quiet. When I get a taste of feeling good, I immediately want to avoid quiet/still time. Hmmmm. Not sure if this is good, bad, normal, or what-- but it's me for now.

Ok- off to the mid-week service at our church. That, I can handle.

DAY 163: Bone Pain! A good sign...

2009-06-08T18:33:00.005-04:00

Dang, that bone pain is really awkward. I can't accurately describe it, so I won't even try. Just know that it's really a strange experience! The bone pain is an indication that the bone marrow is being stimulated to produce white blood cells. For this reason, I have come to CELEBRATE this bone pain! I celebrate it as a writhe in it. It hopefully means I am about to leave the 'cave' of neutropenia someday soon.

At the clinic on Sunday, blood work confirmed that my tank is still low. I needed 4 infusions (1 of fluids, 1 of platelets, and 2 units of red blood). When I realize that my platelets are less than one-tenth of the low end of an average range, and my oxygen-carrying red blood cells are less than half an average male, I give myself a little more slack for being puny. Just need to be patient and ride it out.

I head back to the clinic tomorrow (5th time since my last discharge) to see where things stand. Really hoping for some positive trends, but we'll see.

Softball game Tuesday night, at which I will be cheering and jeering from the sidelines with my mask on, per usual. Can't wait.

This update is all business. Sorry - not too creative at the moment... not enough oxygen getting to the brain!

DAY 159: Riding it out (one more time)...

2009-06-04T17:06:00.006-04:00

So I'm home from what I really, really hope is my last round of chemo forever. Feels great to be here. I don't feel good... but there is hope and excitement in knowing that this should be my last 'dip'.

I have made two trips to the clinic already this week and will go again tomorrow. I got blood, platelets, and IV fluids, and may need another cocktail tomorrow depending on the blood work. My white blood cells (immune system) are wiped out and I hope to come out of hiding sometime next week when they rise back to a safe level.

Luckily, the French Open tennis tourney is on TV for about 6 hours a day, so no secrets what I'm up to to distract myself.

Our softball team won our first game on Tuesday, despite coming in as an underdog. It will probably be quite some time before I get to play, but at least I can watch (and trash-talk) in the meantime.

Two things for which I am really thankful: appetite and sleep.

I weigh 185 pounds right now vs. about 195 when I was diagnosed. How amazing is it that I didn't lose or gain a ton of weight during this chemo process? I meet and hear of many people that have countless problems with their appetite and GI-tract that it really impacts their treatment. Whew.

As for sleep, I've been able to avoid taking any sort of medication for sleeping assistance, because I generally fall asleep well. When I get bone and leg pain, I often wake up several times at night, but for the most part -- both in and out of the hospital -- I have rested well. I can't imagine how it feels to be sleep-deprived on top of everything else. Whew, again.

So long as I avoid an infection over the next 5 days or so, I may be able to 'start' the long road to recovery! Wooooo-hooooo!

DAY 153: 38 mins more of chemo...

2009-05-29T15:29:00.004-04:00

I am sitting alongside what is to be my last dose of chemo. The infusion pump reads 'time remaining: 38 mins'. This drug, Cytarabine, can cause neurological problems, so they make you sign and print your name every once in a while to make sure wires aren't getting crossed.

When I started chemo on Dec 29, the trees were bare, there were no fresh blooms, and the sky was gray. Today, however, it's a beautiful, colorful, vibrant sunny day in the early summer in Atlanta, and I'm soon approaching a finish line that, often times, I thought would never come. For that reason, I don't know how to characterize how I feel. What I do know is that I am very, very content and peaceful. I feel as though I have been sustained for the last 153 days by the grace of God Almighty, the love of friends and family, and the tender care of nurses. It has taken an army.

'34 mins' now.

I don't have the urge to rush to pack up the room and run out the door. I feel most comfortable just sitting here in silence and closing my eyes, thinking about how loved and cared for I am. Thankful for so many things.

'31 mins'.

So I'll soak in this final half-hour doing just that.

DAY 151: In the saddle for Round 8...

2009-05-27T18:57:00.007-04:00

My platelets needed to be at least 75 for me to be readmitted yesterday. They were 75. On the nose. Hmmm... do you find that to be ironic, like I do? To have not had any delays over the past 6 months is nothing short of a miracle. I spoke with my pal who is on the same chemo as I am, and he has had a 30-day (and counting) delay in getting from round 3 to round 4. Sheesh. I am SOOOOOOOO fortunate in this.

We have crossed Rituxan off the list and will cross Methotrexate (Lizard Spit) off the list tonight around 12:30am. Then, just one more to go. Best case scenario, we will make it out of here by the weekend and then start our journey into what I hope to be the last nadir. That last "please, please don't come near me" dip.

I was told by the docs that it will probably take 12 months to regain my strength. I hope to prove them wrong. Not sure how or why I think that way, but I just don't want to be exhausted for another year... or miss softball this summer!

The hospital food is spent. I can't even be near it anymore. Those brown plastic lids they use to cover the foods just don't sit well with me. Get that tray outta here, please! Fortunately, Candace went to the organic grocery down the street today and brought me some great spoils: an avocado, sprout and swiss sandwich, some fresh fruit, and some other tasty treats.

The weird thing about chemo that I did not anticipate is the change in appetite. Between losing taste buds and the high-dose steroid, I now crave foods that would've NEVER touched my lips. I am speaking of Twix bars, cheese pizza (Papa John's or Domino's deep dish), Ruffles potato chips, and even cravings of meat! (I haven't eaten meat since Feb 1996!) I'm just rolling with the urges (save the meat part... for now). I am O+ blood type, which I think needs to be a carnivore to get all proper nutrients. So, as my boss says, maybe this chemo will "cure me of my vegetarian thing".

I am hoping for Indian food for dinner tonight... I need to call that in.

DAY 149: The possible eve of Round 8...

2009-05-25T13:27:00.004-04:00

I've spent about 95% of this weekend in my chair or bed... recouping from the previous round of chemo as well as some sort of cold/congestion/aches. The best part about that is that I'm not neutropenic, so I don't have to take my temp and constantly fear infections. Fine by me! It's all relative, eh? I have really enjoyed the rest and not having any agenda to meet.

I also must add that I've eaten veggie dogs, baked beans and home-made mac-n-cheese the past three days. What else is Memorial Day weekend for??? Overdoin' it, indeed.

If my platelets are up high enough (which will be revealed via blood work tomorrow morning), I am scheduled to be readmitted to Emory tomorrow for my final round of inpatient chemo - round 8. Not really sure how to process the arrival of this milestone just yet... so I'll sit on it for a bit over the next week and see what comes up. Sometimes, I'm not really in touch with how I feel about things.

The one thing I do know to be true is that there is quite a bit about this process that I don't want to end. While I surely want to feel normal again and regain strength and health and have some semblance of stability, I am not ready to jump back into life in high gear again.

I don't want life to return to it was before this started. It's probably naive to think that's even a possibility, because I am forever changed in a lot of ways... but if I know myself, I know that I am prone to a happy-go-lucky, ignorance-is-bliss default that could creep in. That's the piece I suspect will not return as it was.

Today is the 4th anniversary of Candace's mom's death. Be sure to read her blog and get a glimpse into her world on this day.

DAY 146: Birthday thanks...

2009-05-22T09:44:00.004-04:00

I am thankful that my time isn't over yet;
I am thankful that God sustains me in my weakness and will never leave me;
I am thankful for a wife that has stood by me every single day of this journey;
I am thankful for a supportive family that has put life on hold in so many ways to lend a hand;
I am thankful for a community of friends and loved-ones that cares for us dearly and shows it;
I am thankful that physical pain is temporary and eventually passes;
I am thankful that I have a job that provides for my family;
I am thankful for the roof over my head and the provision in my life;
I am thankful for the sunshine that basks the new flowers in our front yard;
I am thankful for our furry children who seem to know I'm going through a hard time;
I am thankful for all the other cancer fighters out there who don't give up;
I am thankful for a whole lot more...

Candace just showed this to me... and I feel like I need to read it over and over and over again. Maybe there is a morsel or two in there that will call out to you:

"Quit living as if the purpose of life is to arrive safely at death. Grab life by the mane. Set God-sized goals. Pursue God-ordained passions. Go after a dream that is destined to fail without divine intervention. Keep asking questions. Keep making mistakes. Keep seeking God. Stop pointing out problems and become part of the solution. Stop repeating the past and start creating the future. Stop playing it safe and start taking risks. Expand your horizons. Accumulate experiences. Consider the lilies. Enjoy the journey. Find every excuse you can to celebrate everything you can. Live like today is the first day and last day of your life. Don't let what's wrong with you keep you from worshipping what's right with God. Burn sinful bridges. Blaze a new trail. Criticize by creating. Worry less about what people think and more about what God thinks. Don't try to be who you're not. Be yourself. Laugh at yourself. Quit holding out. Quit holding back. Quit running away. Chase the lion."
- Mark Batterson

DAY 143: Counts coming back up... still weak...

2009-05-19T16:57:00.003-04:00

Well my whites are doing their job and are heading up instead of down! YES! This means that I believe I can safely say that we've cleared the woods when it comes to infection risk, and that I am so very excited that I will only have one more nadir where I get exposed again. If they have to rip out my 2nd port and my brain reservoir, then they would probably not have to reinstall them! (Man, that sounds funny, doesn't it?)

I have also checked my steroid off the list as of last night (320 pills in all!). I was on a 10-pill dose, when most people take 4. This steroid was not the kind that builds you up... it's the kind that rips you apart. Nonetheless, I am happy to scratch that one off the list. Only three more drugs to go, and those will all come off the list next week (if all stays 'on schedule'). Can't take that for granted, as my friend was delayed no less than two weeks in his hopes to get back to his next rounds of chemo. I am so grateful that I have been able to keep rolling ahead.

I have been on a short-term disability leave from work, which has been a mixed bag. Pay got cut in half which has put the squeeze on some things, but it will be very nice to have a little time carved out and protected for my recovery in June. I don't think I'll be able to jump back into full work weeks and plane rides as soon as I had originally anticipated. A good thing, I bet. Forced down time!

My birthday is this Friday, May 22. I'll be 32. I don't really get excited about birthdays, because I honestly don't want things/gatherings to be 'all about me'. I really don't. BUT, passing another milestone in age is going to be a new thing for me to celebrate. I used to take birthdays for granted. That was when I thought I was invincible. But having the surprise of cancer at 31, getting past 32 is pretty darn amazing!

DAY 140: A long recovery?

2009-05-16T13:32:00.005-04:00

I have had a slow week. Translation: felt pretty crummy. When I was back at the clinic on Friday, we ended up needing not only chemo, but also platelets AND two bags of red blood. My counts are near zero right now, and my other levels were so low that we needed to transfuse.

They keep reminding me that I have had seven rounds of one of the most aggressive chemo regimens out there and that the process is cumulative. Ok, ok. I hear you... finally. I have no choice but to hear them!

The physical sensation of anemia and low counts is hard to describe. Standing for longer than a few minutes is not an option. Basic physical activity is so labored and I get extremely winded. It feels very uncomfortable. Walking up the stairs... a tough task. Walking to the bathroom... a tough task. Going to prepare a glass of water in the kitchen... a tough task. I will have to sit or lie down as soon as possible, and my pulse races. My heart rate becomes the equivalent of yours after you've run for 30 minutes straight, and I have simply walked across the room! It's also a very heavy heartbeat, where I can feel it pulse through my entire body, and even see my clothes bulge out with every beat. A truly unique experience.

I am on my steroid for four days (for the last time). While I haven't shaved in five months, these pills give me some nice white/grey peach fuzz whiskers on my chin. A funny look that I've enjoyed.

I have a friend who went through this same chemo one year before me, for treatment of Burkitt's as well. She gave me some insight into the post-chemo world that was enlightening. She kept her port in for A YEAR. She returned to the clinic for blood work (and to flush the port) every four weeks. She did not get any scans, except for the final one after treatment. They told her that she would know the cancer is back before any scan would!

The most discouraging piece of info she shared was that her blood counts took a full year to recover, and that the average for this hyperCVAD chemo is 9 months. It's just so harmful to the body that it takes quite some time for the 'damage' to wear off. While the Neulasta shot we get is a temporary pop to get us ready for the next round of chemo, when you wait on your body to start naturally producing white blood cells, red blood cells, and platelets, it is a much slower process.

I am telling myself that each person's body is different and mine may react totally differently. This is code for, "I'm gonna heal much quicker than that!!!" Clearly, an empty and unfounded statement, but it's my self-deception for the moment, nonetheless, and I'll run with it!

I just really, really wanna play softball, to be honest!

DAY 137: Do I really have one more?!?

2009-05-13T19:01:00.007-04:00

The inpatient portion of Round 7 is complete and I am back at home in the 'recovery' phase. My counts are down, which means I have the typical dietary limitations and quarantined lifestyle that I have come to expect over the past several months.

More great news: I was able to check two chemo drugs off the list for good, meaning that I don't have to take them again (Cytoxan and Adriamycin). Cytoxan is the biggest culprit for nausea and Adriamycin causes heart problems, so these are two that I surely will not miss.

Friday, I will go to the clinic and get my last dose of Vincristine and over the weekend I will take my last doses of Dexamethasone. Two more I will be able to check off the list.

Then, I will be left with three more drugs for which I look forward to calling it quits. If I stay on 'schedule' (a term I use jokingly), I will be out of the hospital by June and ready for a few months of recovery where I will learn to re-use my body. Undoubtedly, it will be a slow process of learning how to function in normal ways, yet again. Like a little kid learning everything, I expect it will be a pretty exciting time for me.

I have met two other Burkitt's Lymphoma patients at Emory (these are the guys who are my contemporaries, ironically enough). One of them has their first baby due in 7 weeks and is on Round 4 of treatment. They are newlyweds and clearly a lot of life changes are all happening at once. He was supposed to go back in for his Round 4 last Tuesday, but won't be able to do so until this Thursday due to his bloodwork. I can imagine the frustration when things don't progress at the clip we've set forth in our own minds. It takes me back to the whole 'I am REALLY not in contol' truth of all this. Hang in there, Jon. You will make it before you know it and start your new family.

My co-workers did a really nice thing for my upcoming birthday: they had a caricature drawn of me in a boxing ring, knocking a big 'cancer' gorilla out. 'Gotta be tough to go 8 rounds with the beast!' In the drawing, I have a six-pack and huge biceps... clearly a mockery of where things stand, but otherwise it might not have been a fair fight, right? Thanks to all of you for your kind notes and gestures. It has put a smile on my face that will stay for quite some time.

I have signed up for a softball league with my church for this summer, and I am VERY excited about the upcoming games. It will be several weeks before I can get on the field, but the thought of having a goal out there motivates and excites me. My wife will play and I am very proud of her! I will enjoy cheering the team on, and talking the prerequisite trash to all the other teams as they fumble about. This is good livin', as far as I'm concerned.

My mother came down from Nashville to help take care of me over the weekend, and my sister is here now. We were able to celebrate Candace's birthday Monday as well as our 6th wedding anniversary on Sunday! Six years... and so much has happened. If you haven't already, I encourage you to read Candace's blog entry from Mother's Day. She lost both her mother and father in 2005 and has shared some very touching thoughts. Thank you, baby, for sharing.

DAY 132: Facts and Figures...

2009-05-08T12:29:00.002-04:00

Platelets were thankfully up to the 125 range, which permitted a timely readmission for Round 7. I am hoping to get discharged over the weekend, and back to our own home and bed. Can't wait. I have had 6 bags of Cytoxan on this round, so the nausea is coming on with full force... but the great news is that will be the last time I receive that drug! No more Cytoxan!

Here is a pretty staggering recap of what we've come through thus far:
172 days since diagnosis
132 days of chemo
8 weeks in the hospital
40 trips to Emory Winship cancer clinic
1 Emergency appendectomy
2 trips to the ER
12 vials of frozen future Smartt babies (well... Stuart's contribution at least)
2 ports (in chest; nice matching scars!)
1 brain reservoir (for chemo directly into the cerebrospinal fluid ventricle)
8 intrathecal (spinal/brain) chemo treatments
7 blood transfusions
8 platelet transfusions
1 Atrial Fibrillation with a chemical shock to get heart back in normal rhythm
1 bone marrow aspiration (may need more)
1 lumbar puncture (with 8 unsuccessful lumbar jabs)
10 days of severe spinal headaches
320 steroid pills
7 types of chemo
24 bags of Cytoxan over 72 hours
8 bags of Vincristine
4 bags of Adriamycin over 48 hours
4 bags of Methotrexate over 48 hours
8 bags of Cytarabine over 64 hours
10 different antibiotics, 4 of which I take twice daily every single day I'm at home
4 PET/CT scans
1 really bad STAPH infection with a 104+ fever for 4 days straight
2 quilts and 1 lamp for every hospital stay
1 Season of Lost (1st season on DVD)
1 Season of American Idol.
5+ months of missed work
$300+ spent on parking
Unexplained fever spikes and night sweats
Hours and hours and hours of waiting
Large amounts of Rice Crispies and Gatorade
Too many vomits to count

Endless packing and unpacking...washing, folding and repacking
Many friends I never knew would be such amazing friends
So many caring nurses and great doctors
So many more courageous, beautiful people fighting cancer
Enormous change in both Candace and me - we are forever changed
Ceaseless prayers offered up on our behalf
Great supportive family (blood and church)

May is a special month for us: we both have 32nd birthdays, our 6th anniversary, Mother's day, and the 4th anniversay of Candace's mom passing away (5/25/05). We have so much for which to be thankful... and we are!

Thanks for sharing with us!

DAY 128: The eve of Round 7...maybe...

2009-05-04T21:59:00.004-04:00

Tomorrow I get lab work to see if my platelets have recovered enough for another beat-down. If so, I will be readmitted. If not, I assume I will wait until later this week and try again. I've never had to delay a round due to levels not coming up, so I guess this is what they meant when they said the chemo is cumulative: my body is just having a harder and harder time recovering.

The fevers and migraines... well they just went away on their own. Not really sure what was causing them, or moreso, what made them cease. I am very happy, nonetheless!

When round 7 is over, I will be able to say "one more round!!!" and I cannot wait to do so.

Day 128? Whew. I guess after you've been hanging in for long enough, you just get used to hanging in. And, well-- I'm hanging in!

DAY 124: The fever that won't go away...

2009-04-30T16:37:00.006-04:00

Well, this week has been a crazy one, unlike no other round. I have been to Emory 7 out of the last 9 days. I am still getting fevers every day and we can't seem to figure out why.

I got a blood transfusion on Sunday, Platelets on Tuesday (they were at their lowest level ever), took blood cultures from a total of 5 different sites Saturday, Tuesday, and Wednesday (to see if they grow out an infection), IV Cefepime (an antibiotic) yesterday, IV fluids yesterday, a nasal swab for RSV (a full-on 4-inch nostril assault all the way down into my throat!), and a prescription for Levaquin (another antibiotic).

The good news: my white blood cells have come back are at normal levels! This means I'm not a walking piece of duct tape, as I call it.

This fever has perplexed us all. I seem to get it later in the day and overnight, and it moderates in the morning. The other night, it was 102.8. We called in and they told us it was ok to take Tylenol (a no-no when whites are down). When I did, I set my gag reflex off and sent dinner into the sink and bathtub... oops. I ended up sweating away the fever and got some rest. Each night seems to replay the same fever spike.

Back to the clinic tomorrow for more blood work, tests, and hopefully some answers!?!

PS- when the nurse practitioner described the nasal swab to me, she said, and I quote, "Oh, it's not bad. It like this wire that goes up your nose and then hooks down in your throat. It takes, like, two seconds."

Are you kidding me? My heart started racing and I became hot and flushed that I had to lie down to regain composure.

I replied, "Look, you have to promise me you will never use these two words again when describing a nasal swab: 'hook', and 'wire'. Images of some sort of metal fishing hook pulling out my esophagus through my nose is all I could envision."

She agreed to change her spiel, and I feel good about saving people from the horrible experience I had, due to such a poor choice of words!

DAY 119: Fever update...

2009-04-25T22:55:00.006-04:00

The fever slowly came down last night from 100.5 into the 'safe' 99.5-100.0 range. Thank you all for your prayerful support. There is no real rational explanation for why it came down. I am thankful we were able to spend the night, not in the hospital, but in our own home. Yes.

I went to Emory clinic first thing in the morning today for bloodwork, and to do some blood cultures to see if anything grows. I also got put on another antibiotic at home, which brings the total to five of them.

Tonight, a few hours ago the fever spiked to 101.4. This is nearly a whole degree above the 100.5 cutoff where they typically bring you into the hospital. We called the oncologist on-call on our Bone Marrow Transplant team. He told us that they think my white blood cells are staring to grow back, which can cause fevers. As we already have blood cultures underway and added a new antibiotic, he again suggested that we try to ride the fever out. Since I don't have chills or rigeurs along with the fever, he suspects it may just not be an infection. I sure hope this is the case.

While we are a litte surprised we were advised to simply watch and wait, the fever is slowly coming down... bit by bit. Thank you, Jesus. He is the ultimate healer and can do anything. I find rest and comfort in knowing that He has me in His hand and does all the heavy lifting in this journey.

I am running a fever. Please pray.

2009-04-24T19:21:00.000-04:00

DAY 117: Neutropenia and nosebleeds...

2009-04-23T18:01:00.004-04:00

Well we have raised more chunks of change for the Lymphomathon! How great! I am so thankful to all of you.

I am enjoying a series of nosebleeds... the kind that start spontaneously (out of both nostrils sometimes) and flow like the Nile. A normal platelet count of 150+ would do the trick, but mine was 26 yesterday. Got a bag of platelets transfused, but I think that only bumped me up to 30-35.

The bloodwork also confirmed that I am neutropenic, so my white blood cell count is negligible, as expected. I haven't left the house today and have been wearing a mask constantly. Feels like being on house arrest sometimes. It beats a 104.6-degree fever and an unplanned hospitalization and unnecessary surgeries, no doubt! It's all about trade-offs.

It was on my last B-round that I got the infection and it was on the Friday of week 2(i.e. tomorrow). So psychologically, if I can make it through the weekend, I will be emerging from this patch of woods. Let's hope that happens! Prayer or 'good thoughts' are welcome in this area.

Back to the clinic tomorrow for a 7am lab appointment and transfusion if needed. Starting the day off right. Let's roll.

DAY 113: Rounding third...

2009-04-19T15:54:00.004-04:00

I made it home from Round 6 of chemo and am relaxing nicely in my comfy chair. Today has been really nice-- we were able to go to church this morning, reconnect with some friends we haven't seen in several weeks, and grab a nice lunch. Even better, my father came down from Nashville to help for a few days and having him here is wonderful. I am so happy to have him around.

We had about as uneventful Round 6 as one could ask. No real stories to report. My kidneys seem to do a good job metabolizing the Methotrexate down to a level that allows them to send me home. YEAH FOR GOOD KIDNEYS! The name of the game is hydration: keep things moving through you as quickly as possible.

This past Friday, I found out there was another Burkitt's patient getting the same chemo as I am, and he happened to be on the same floor as we were. What's more ironic, is that he is also a 31-yr old male. Candace and I introduced ourselves and tried to offer whatever words of encouragement we could-- they are on Round 3. The best part was repeating over and over, "Yeah, I know exactly what that's like -- and it sucks, doesn't it!!!"

Thank you to all the generous givers out there who are supporting the Lymphoma-thon. We collectively raised $1,000 and that makes me very proud. I can safely say that this will be the first step in many ways in which I hope to support efforts to bring help and awareness to a clear need. Having a cause is easy when something hits this close to home, right!?

Back to Emory for labs and my Neulasta shot tomorrow at 7:30am. Please-- pray for NO INFECTIONS! If I can make it through this week and next with no infections, I think it will be a huge milestone!

Thank you all so much for reading...

DAY 107: Round 6 & an option for Lymphoma support...

2009-04-13T20:24:00.007-04:00

I check back into the Emory 'hotel' as an inpatient tomorrow for round SIX (of EIGHT). Unfortunately, my body still hasn't really recovered from the last round and so I'm a little disappointed, but I guess it's playing out like the doctors said it would. This is my B-round, which means it is the stronger of the two and I really, really, really hope we don't have any infections in the coming weeks. To be candid, that's what scares me the most these days: another infection. That would mean getting my second port out (and a third line put in somewhere) and having to be put on all those powerful antibiotics. Fevers and chills again... noooo thanks. So please pray this round comes and goes with no infection or curveballs.

Below is some info that I want to pass along from Candace's blog regarding a local Atlanta event coming up that specifically supports Lymphoma. We are well on our way to raising a good chunk of support, thanks to all of you!

(From Candace's blog)
Ten years ago, Stuart's chance at life would be very slim. Today, because people have supported research for lymphoma, Stuart has a great chance of living a cancer-free life.

If cancer research speaks to you, come walk with TEAM SMARTT to show your support. Raise some money, give some money. If you can't walk, join the team and help raise money in honor of Stuart and all those who have struggled with this battle and who will struggle with this battle.

The Lymphomathon is non-competitive 5K walk where survivors, family, friends, community and corporate teams walk in honor and in memory of those whose lives have been touched by lymphoma. Over half a million people are currently living with lymphoma in the United States -- the most common blood cancer in the United States today and the third most common childhood cancer. Funds raised by participants will support the Foundation’s mission of eradicating lymphoma and serving those touched by this disease. (facts about research and lymphoma are listed below)

Event Location:
Wesleyan School (Norcross)

Event Schedule:
Registration 4/25/2009 9:00 am - 10:00 am
Walk 4/25/2009, 10:00 am - 12:00 pm

Fees:
Free: No Fees

To find my personal Lymphoma-thon page (to give donations or to join) go to:
Candace's Lymphomathon page

You can also go directly to our "Team" page to register to walk or to make a donation. Team Smartt page

Thank you for your help and support!

For those of you who are WALKING with us, we will be wearing lime (or a light green) shirts. Lime green is the "color" for Lymphoma. (Think pink = breast cancer)

If you have any questions, just send Candace a comment via her blog.

Lymphoma is a type of blood cancer that occurs when lymphocytes--white blood cells that help protect the body from infection and disease--begin behaving abnormally. Abnormal lymphocytes may divide faster than normal cells or they may live longer than they are supposed to.

Lymphoma may develop in many parts of the body, including the lymph nodes, spleen, bone marrow, blood, or other organs. In Stuart's case, they found his in the appendix after an emergency appendectomy. They also saw two other tumors - both in the small intestine. The problem with blood cancers is they move, they flow around freely. Wherever the blood goes, these cancers can go, therefore it is very different from having a stationary tumor affecting one organ (breast cancer, stomach cancer, lung cancer, testicular cancer, etc.)

There are two main types of lymphomas: Hodgkins (the most common) and Non-Hodgkins (all the others). Stuart's is a type of Non-Hodgkin Lymphoma called Burkitt's Lymphoma. It is very rare (on 100 cases a year in the U.S.) and one of the most aggressive types (they told us if we did not go through with treatment, he would be dead within 6 months).

Lymphoma is often called the "Rosetta Stone" of cancer research because it has helped unlock the mysteries of several other types of cancer. The Lymphoma Research Foundation funds some of the most cutting-edge research to find a cure for lymphoma. Some promising research areas are:

New antibody treatments, which act like guided missiles that zero in on specific targets (antigens) on the lymphoma cells. Stuart takes one of these called Rituxan, which was researched and added to treatments only in the last 10 years. Rituxan has increased chances of survival by roughly 10 percentage points.

Vaccine treatments, also known as personalized active immunotherapy, that stimulate the immune system to attack the lymphoma

Profiling tumors by examining the fingerprint-like pattern expressed by genes, thus aiding in prognosis and development of new treatments. At first, Stuart was misdiagnosed with intermediate grade Diffuse Large B-cell Lymphoma. Thanks to Vanderbilt and Emory, they decided to do a 2nd diagnosis using this new "gene-expression" technology (called a FISH study). He was then diagnosed with the correct type of Lymphoma - Burkitt's. It is VERY important to get a correct diagnosis so the cancer can be treated appropriately.

Had Stuart been given the chemo initially prescribed for his initial diagnosis, he would stand a 0-30% of overall survival.

DAY 99: Marriage weekend...

2009-04-05T17:00:00.005-04:00

Some friends told us of a great marriage conference/seminar coming to Atlanta this weekend and we had put it on our calendar sevaral weeks ago, not really knowing if we'd be able to physically attend. Well after several crummy days last week, I woke up Friday feeling purdy darn decent (I would call it a minor miracle, in fact) and so we ventued out to the conference.

It was a weekend dedicated to 'loving your spouse like you mean it' and giving your absolute best to your marriage. What made it even more enjoyable was attending alongside two other couples, with whom we are very close. While not everything we heard was new or ground-breaking, sitting alongside your spouse and focusing on nothing other than making your marriage outstanding is a wonderful thing and it pays great dividends in so many ways.

One part that I initially thought was quite awkward was that we were to write a love letter to our spouse. I mean, how contrived is that... it's supposed to be natural and unprovoked, right? Well the only problem was that I cannot tell you the last time I actually did so -- and so I'd say this venue would be just fine.

It was sobering to realize just how hard it is to remember specifically what you were feeling when you first fell in love, even if only ten years ago for me. Layers of life, grief, and time seem to pile on and obscure it all. The good news is that memories eventually started to come back to me with force and then putting words to them became very effortless.

I am as in-love with Candace today as much as I was the moment we met and I first fell in love with her back in 1998. She is a one-and-only divine gift to me, who deserves the VERY BEST I have to give. She is my beloved and it's great to spend time reminding each other of this truth.

Back to the clinic tomorrow for lab work and intra-chemo chemo. I suspect my counts are approaching the nadir, which means I will be doing my no-infection dance tomorrow night if any papparazzi care to try to catch a glimpse from my street corner.

DAY 96: Spring is here and I can prove it...

2009-04-02T18:31:00.005-04:00

One of the unintended casualties of this chem-athalon was our yard, and more specifically our flower beds. They had once been utilized in their full intended glory for flowers and plants, but had devolved into rocky, hard, barren spots that really deserved not a second glance. Well this all changed when some, what I'll call, 'yard fairies' descended on our lot and made some sweeping changes. Wow. I am so grateful for those who put this project together and got their hands dirty to make it a reality.

Every time I pass to or from our front door, or sit out on our front steps, I now have something to enjoy.

PS- I think the four-legged yard fairy was in charge of watering.

DAY 93: Last brain chemo and a possible paroloee...

2009-03-30T13:18:00.005-04:00

Well I am told that in a few minutes I will receive what we all hope to be my last Intrathecal (via my brain resevoir) chemo treatment. This is good news. No-- great news. The risk of infection is so high that I am all for people no longer pricking my skull if at all possible. I won't get the resevoir surgically removed until after I am well and complete with all 8 rounds of chemo, so the half-horn look will stay with me for a few more months. Sorry, kids, I know it's scary.

I am hoping to get out of the hospital today and go home. Even though I still feel nauseous and queasy and tired and drained and yadda yadda yadda, it's a lot more fun to feel all that at home rather than in an institutional environment.

Staying here, even if only for a week at a time, has made me wish I had spent more time visiting my dad's mother in the nursing home before she passed away. She was there for many years and I feel like it must have been miserable stuck in the same bed, with the same horrible food, and the same pitiful, unchanging view. All she wanted to do was be taken outside for a walk, which I regret not doing for her more frequently.

Day 93 seems like a long time, I know. Easy to let life go on for those not fighting anything right now. But for me I assure you that every day is fresh and real for me and I don't have a way out just yet. Thanks for those of you who are hanging in there with me... I know it's getting long. Trust me, I feel it every day.

DAY 90: New port and a clean scan...

2009-03-27T09:49:00.006-04:00

Well I am back in the hospital for what will likely be another 5 nights for my 5th round of chemo (an A-block). Yesterday moning, we had another port put in my chest. As a reminder, a port is a small implantable device with two chambers covered by a self-sealing silicone lid. Attached to the port is a ~25cm catheter which is threaded over my collar bone, down my superior vena cava, and then down to the upper chamber of my heart. Any infusions I get are virtually immediately circulated throughout my entire bloodstream/body.

I had this same type of port on my right side, but it was removed last week as a result of my infection. Most often, the infection will lodge in any foreign body and the antibiotics cannot effectively treat it. So they have to take it out, without knowing if the infection is even located there. Mine came out, and was clean... so it didn't need to come out. Hindsight...20/20...yeah.

So when I was going back for my port surgery, they had to give me another IV line in my arm. It took them 4 tries to get the IV catheter inserted successfully. Ouch. I don't want pity, but I've had 9 IV lines in my arms in the past week. They are eaten up. Lots of bruising and pock marks. Having the port back sure makes my arms happy!

Two doors down from our room there are two to three armed guards sitting outside the door. THey have guns. We kept asking the nurses what the story was, and they would not leak a word. I even asked, "Are the guards there to protect that person, or protect us from that person?" This morning, we learned it's the latter. It's a prisoner getting chemo. Cool, huh? Maybe I can make a new friend.

And the best news of all: my PET/CT came back squeaky clean. I am still in complete remission and there is no evidence of the disease in my body. Unfortunately, we still have to do 8 rounds, as all of the clinical data (and high response rates) were based on 8 rounds of R-hyperCVAD-M/A treatment. Ok. So after this round, I will hopefully be 5/8 of the way through treatment. We just hope there are no more infections out there awaiting us... that was something we could certainly do without.

This round is the one with the steroids... so that bodes well for blog updates! Thanks for reading.

PS- a long-time high-school friend of mine, John Bearden, lost his mother this week in Nashville to cancer. Please keep them in throughts for those of you who think and prayers for those of you who pray. Thank you...

DAY 88: Here we go again... Round 5

2009-03-25T09:33:00.003-04:00

Hey there, it's Stuart again.

Well after a few days of recovery, it's time to go back in the game. I have surgery scheduled for tomorrow at 7:30am to put ANOTHER port in my chest. This time it will be on the left side... so I guess I'll have matching scars. After surgery, I'll be admitted for Round 5 of chemo.

Yesterday, we spent the day at the clinic getting lab work, meeting with the nurse practitioner and also getting a new PET/CT scan. While my counts are 'back up' enough to be stable, it amazes me how low they are relative to normal ranges. Virtually none of my blood levels are within normal specs. I guess this is what they mean when they say that the chemo is cumulative. My starting point each time seems to get lower and lower.

The bout with infection last week was really, really, really scary and rough for us. I've never had a fever north of 104 and the shaking was so bad I thought I would pass out. Neither of us really enjoyed another 5 nights in the hospital between chemo rounds, either. But we made it through, by the grace of God, and here we are... onto the next day.

Adding insult to injury was a pitiful first-round loss by my alma mater Wake Forest against powerhouse (?) Cleveland State. Is there nothing sacred?

Another update hopefully coming soon, after surgery and check-in tommorrow...

DAY 81: Home sweet home...

2009-03-18T21:37:00.004-04:00

This is Candace.
Just wanted to let y'all know we are home.
Stuart's counts JUMPED up over night...high enough to be released.
We are SUPER excited and thankful.

They pushed us from coming back on Tuesday to coming back next Thursday for Round 5...it will be awesome to have a break at home.

Cough and dizziness and weakness are still issues...but for now the doctor is chalking it up to 3 days of high fever and a severe bacterial blood infection.

Hopefully, the next update will be from Stuart!
Thank you all for your prayers.

DAY 80: Still fever free....still a prisoner in the hospital.

2009-03-17T23:45:00.004-04:00

This is Candace.
Quick update:
Fever still down.
They pulled some cerebral spinal fluid today to check for bacteria there - Should have results tomorrow.

Still having problems with:
1)headache and dizziness
2)bad cough
3)counts are not recovering (although whites came up from <0.3 to 0.5)

Even if he doesn't have fever, they will not release us until his counts go up.

He is VERY weak but feeling better than the past 4 days.

His oncologist came in today and said "You were VERY sick, you were VERY sick" (His emphasis on VERY).
Thank God we are in a safer place regarding the infection. Not "out of the woods" but headed that way.

Stuart had some fluid on his lungs this morning. They gave us a breathing machine to work his lungs and they seem to be better.

Tomorrow will be Day 6 of this hospital visit. Yuck. (but thank God for good doctors)

Will update soon. Keep praying.
Goodnight

DAY 79: Finally fever free

2009-03-17T01:47:00.001-04:00

Please go to candacesmartt.blogspot.com to get my update on Stuart!

DAY 79: We see one case per year...

2009-03-16T14:50:00.012-04:00

This is Candace again.
Yesterday was a long, worrisome day for me!
We started around 5 am with 2 bags of platelets and a 3rd bag in the surgery room.
They came and got him around 9am.
They got the port out as planned with no bleeding issues.
The have inserted an IV in each arm so that they can adminster blood, meds, and fluids (since we no longer have the port to do this).

Stuart had a high fever ALL day yesterday...it continued to get higher and peaked out at 104 around midnight and stayed there.
We had poor Stuart packed out in ice - under his arms, behind his neck, on his stomach - he was shivering and so hot you could (in Stuart's words) "cook an egg on his head".

They will not let him have Tylenol as they want to see the "trend" of the fever - when it peaks, how frequently it peaks, etc - will tell them lots of information. So no artificial means of altering the fever... which means Stuart has to suffer through it.

Bless his heart - he is a trooper. He is very brave.

The fever broke this morning around 10 am.
It has continued to go down slowly.
They stopped his antibiotic early in the morning - his labs showed that the levels of antibiotics in his blood were too high.

He started vomiting around 11am and got really bad vertigo (the room spinning), but this passed and they are watching him.

The Doctor of Pharm. came by this morning and told us the bacteria was identified as "Stomatococcus" - a sister of Staph. He also told us that *HE* only has 1 or 2 cases of this bacteria a year.

Our oncologist came by after this and told us they are taking him off the Vancomycin (standard treatment for Staph.) They think Stuart is having a reaction to the Vancomycin. They will start a antibiotic they like to withhold for bugs that are resistant to Vancomycin..."It will be like killing a sparrow with a bazooka", the PharmD said. "Use the Bazooka", I say, "Just kill the sparrow."

So the persistent fever can be because:
1) Stuart is having a reaction to the "old" antibiotic, Vancomycin....OR
2) There is another bug present besides the Stomatococcus that isn't showing up on the cultures.

Either way, he is hoping that this change in antibiotic will fix both of these.

He said he also feels like they still have "control" over the infection.
Stu's vitals continue to be good. Once these start acting up, we could be looking at sepsis.
This is not an option.
This antibiotics will work.

They are giving us until tomorrow for the fever to go (or stay) down...then they start checking the brain port, Cerebral spinal fluid, etc.

The other complicating issue is that Stuart's blood counts have not recovered. His red and white counts are decimated.
By this time in his cycle, they normally are on their way up.
Since Saturday, he has gotten 4 bags of blood and 3 bags of platelets...and continuing to get his Neupegen shots to stimulate the white cells to grow.

They will not let us leave until his fever is gone and his counts are up.
So - home sweet home for now.
And...we are supposed to come back for Round 5 a week from today (for now they are keeping us on schedule). This will be one long hospital stay! :)
I don't know how one goes into a round of chemo when your body is so "down", but I guess we will find out.

So, please pray:
- that these new antibiotic work and the fever STAYS down
- his counts start recovering quickly

That's all for now.
Will update soon.

DAY 77: Infection and fever...

2009-03-14T21:32:00.007-04:00

This is Candace - I am posting a quick update for Stuart.
We had an unexpected admission to the hospital yesterday afternoon.
We went to clinic at 8:30am to get labs drawn and were home by 10:45.
Around 1:00, Stuart started getting the "chills". Soon after, we took his temperature and it was 100.2.
We called in and they instructed us to come into the hospital.
We came and they started him on IV antibiotics. He has NO white blood cells so he has no way of fighting infection.

Two hours later, his fever spiked to 104 and his heart rate shot up to 150...
We had some nerve-wracking moments and then they rushed us to a room.
His fever stayed high all night last night.
They took blood for cultures. The prelimanry finding is that he has a Staph infection.
The theory is that it is coming from his port.
They want to take his port out ASAP...but, his platelet count is too low.
He received 2 bags of blood today and will recieve 2 bags of platelets at 5 am in the morning. If his platelet count is high enough, they will take him down and remove the port in his chest. The surgery is scheduled for 9 am.

He has been on constant antibiotics and Tylenol and he still has a fever! :(

We are continuing the Neupegen shots in hopes that it will help boost his white cell count.

Please pray for Stuart and for healing of his body.

More specifically, that the bacteria would respond quickly to the antibiotics...and that the surgery would be smooth sailing.

Will update soon-
Thanks for your prayers and for checking in on us...

DAY 73: Back to the clinic for the day...

2009-03-11T19:43:00.006-04:00

After getting out of the hospital a day early, I was thrilled to be in my own bed! They monitor the body's metabolism of the Methotrexate and only when it is low enough will they let you return home. I was drinking as much as I could; doing whatever would help flush things out. In addition, there is a constant 24 hr/day infusion of Sodium Bicarbonate to help the kidneys not form crystals due to the drug. When I came home, I weighed 198lbs! Three days later, I was at 182. If that wasn't highly expected, I'd be worried... but fortunately we had some insight as to why I was bloated and swollen for a period there.

Today was an eight-to-five clinic visit. It was good timning, because today I had trouble even standing up this morning. I would feel like I would black out whenever I'd transition from sitting to standing. My pulse was 125 -- when sitting still! Borderline anemic, I did indeed need platelets (level of 34 vs. 150-250 average range). So, I met with the nurse for a quick assessment and then waited for an infusion chair. Once in the chair, I got a bag a saline, a bag of platelets (lemon cream sauce), and then my brain chemo. It went well today! Only one prick in the head! There is a chance I may not have too many more of them left to do... maybe a small victory within the battle here on the horizon!

While I've not heard difinitively from my doc, I am mentally prepared for 8 rounds. I think that's where things are headed, so I've tried to re-calibrate my expecations. That ain't easy to do. Conversely, if we had started out expecting 10 rounds, and got scaled back to 8, things would be a little easier. So, lest we set too many futile expectations for ourselves... they will indeed be tested!

Candace and I need a break. We're going to do our best to get a quick weekend roadtrip to Destin if possible. I think hitting the pause button over some fresh air will be prudent, as we've been burning the candles at both ends for many months now. She has been forced to invest so much in me... not just time, but significant emotional energy as well. A few days at the beach can work wonders to replenish the soul. Even better, we met in Destin in 1998 so it's always great to go back to 'where it all began'...

We met another relatively young couple at Emory who is battling Lymphoma as well. The husband was diagnosed about 9 months ago, they treated it... and it came back as a different type of Lymphoma. Twice. I don't know too many details, but his situation does scare me. I don't like to entertain the idea that this 'thing' could change forms and come back. No, no, no.

Candace met his wife last week when he was in a room two doors down from me in the hospital. He had contracted an infection, presumably due to his port, and his body was not strong enough to fight it. They made a tough call to remove the port, despite his platelets being dangerously low for surgery. Then a miracle happened: the medicines started beating the infection and he got well enough to be discharged. Small victory in the larger battle... ahhh, yes. Praise God for all of this.

Someone out there always has it worse than you do... ALWAYS. Think of them, and you will become grateful.

DAY 67: Red Blood Cells and Cinnabon...

2009-03-05T10:26:00.009-05:00

Te first part of this cycle was an eventful one. I got my dozen or so interruptions throughout this first night, which didn't permit too much rest. We were changing over drugs, hanging various pre-chemo and chemo delights, drawing blood, giving eyedrops, swalling pills, going to the bathroomo, testing pH. Just the basics.

We were told early in the morning that I had become anemic and would therefore need two bags of red blood cells. Mmmmm. My first experiene getting blood. I was given Tylenol and Benadryl as pre-meds to prevent any allergic reactions.

The green bag is Methotrexate chemo (it is light-sensitive and has to be covered), the clear bag is Sodium Bicarbonate (to keep the chemo from crystallizing in my kidneys), and the red bag is O+ red blood cells.

I was craving a cinnamon roll after breakfast... and the cinnamon roll fairy brought us CINNABON!!! - with extra frosting, I might add. I honestly believe the last time I had one of these was when I was 16 years old and worked at the Bellevue mall in Nashville at 'Electronic Express'. Wow. It was dec-a-dent and I savored every single bite. Cannot make a habit of these things, I am well aware...

Later in the day, we had to get the intrathecal (brain chemo). It was a little scary time time because it was a new person, who I quickly got tht feeling didn't really know what he was doing. I like to think that the people sticking chemo in my head via needles are nothing short of experts. So they prepped me and stuck me and stuck me and stuck me and just couldn't seem to hit the sweet spot.

We showed them a photo of one previous time when things went smoothly, as an attempt to try to guide the needle placement. It worked and we accomplished the procudure in the end. Whew. Glad that's over... until the next time!

Here is shot of me sporting my "Chili Tru-Rap" from Wal*Mart for $1.44. It was a Christmas present from Dr. Matt Everett, which I know looks totally riduculous... which I why I wear it with pride.

The lady four doors down from us passed away yesterday. I don't know anything about her, but her family was here most of the day congreagating in the hallway, and so we knew things were not good. Please keep in your hearts all the people who fight this fight, or any other health battle, and don't have the ourcomes that they hope for. It's really sobering -- and sad.

DAY 65: Kick-off of Round 4... here we go again...

2009-03-03T15:02:00.010-05:00

Well I just had my port accessed and am ready to get hopped up on round 4 drugs. This round is the 'B' round, which will involve Rituxan, Methotrexate, and Cytarabine. I will also get the latter of those two drugs in my brain-port (again). The B-round was rougher on me last time around, but maybe this time there will be a learning curve and my body will handle the drugs a little better. Hey, nothing wrong with optimism, right? I expect to be here through the weekend, until Sunday. But plans are always subject to change.

This morning, instead of getting here at the crack of dawn like I normally do, I decided to take my time. (Rationale: the chemo orders take until late afternoon to get completed anyway, and so what's the rush?) It ended up being a smart move, as the hosptial admissions process was jammed like never before and patients were practically backstabbing staff to try to get room assignments. I even got to sneak out to my favorite restaurant for lunch while I was waiting (Taqueria del Sol). Mmmmm. Fish tacos and cheese dip from Taqueria are, in fact, the same meal I'd request as a last meal on death row. That's a little melodramatic, I recognize, and am not implying I'm anywhere near death row this week. It's bad, but not *that* bad!

Luckily, Dr. Flowers ('my' doctor, the Tiger Woods one) is making rounds this week, which means I got to see him once a day. I grilled him on the 6 vs. 8 question just now. He told me that he had not decided yet and that he wanted to wait until my next PET/CT scan (which will be sometime in the next few weeks.) I get a feeling that he is leaning toward recommending 8 rounds... but he is going to reserve his thoughts until later. Geeee! Come on, people! Puh-leeease! There have been studies on the effectiveness of this chemo for Burkitt's Lymphoma, but most have involved 8 cycles. That's what we're up against...

I'm in a great room with a great view - again. The sunsets are great and they feed my soul tremendously. I can even see the skyline from my bed this time. Wow.

A new creature comfort I brought with me this time was a radio. I am listening to the news right now, and keeping in touch with the outside world a little better. It's nice to have some classical music in the background, too. Maybe we can use the radio to drown out some of the drone of the infusion pump clicking. One of our close friends has let us borrow her sound machine. It has been a life-saver. I need to return it and get one for our own! I won't be able to do without.

Lest I waste hours and hours of time, I've committed to really laying off computer/internet use for the season of Lent, but I will do my best to keep things updated this week - as it will probably be a fun one. (Thought to self: is it ok to watch Celebrity Apprentice and American Idol, still??? Geesh. Drivel.)

DAY 60: Ach-ew...

2009-02-26T11:11:00.002-05:00

Sorry for the slow week on the update front: I got me-self a little cold and am just blowing my nose all day long, it seems. I guess 'tis the season for these little deviations, but am glad that I happened to get it on my 'strongest' week of the cycle.

Having never really battled anything like this cancer, I am experiencing a new side-effect: an empty tank. I've got no real energy to pour into relationships or people right now, emotionally or physically. While I don't like it, I have to just ride it out and ask for a free pass for a few more weeks!

Back to the hospital come Tuesday for my next round. I still haven't heard from my primary doctor about 6 vs. 8 rounds, but will keep you posted.

Back to the tissue...

DAY 56: Henri Nouwen and A-Rod...

2009-02-22T06:45:00.003-05:00

Well like A-Rod, I, too, am a steroid user. I am on day 3 of my 4-day Dexamethosone stint and I will say it surely has an effect on the body. (I am hitting the ball much futher. Ha!) I take these 10 little bitter green pills every day (in addition to the plethora of others I already take), but these little buggers amp me up... and unfortunately at all hours of they day, irrespective of the position of the sun. Lots of lying in bed at 3:45am -- just thinking.

This morning, I woke early and took a short walk in the brisk morning air. It is an amazing realization to see, physically, that each and every day really is a NEW creation in itself -- literally. The sun peeking over the trees with its myriad of changing colors... no two alike. The birds out circling for their first meal of the day. The wind, blowing where it desires, with no beginning and no end. And little ol' me, taking it all in, one labored breath at a time. It was one of those moments, that I'm sure we've all had at one point or another, where we say something to ourselves along the lines of, "Gee, wouldn't life be a little easier and smoother if I could just start *every* day like this?". But life happens and speeds up and many legitimate demands tug us into our daily rigors that thwart that pure, seemingly modest, intent. Well today, I got to start things off right and I'm grateful.

So I came back from this stroll and read the next chapter in a really good but really brief book by a fella named Henri Nouwen called "Life of the Beloved". He touched on something that was right on time for what I am learning that warrants a brief share. He wrote of the linkages between pain in our lives and communion with the divine -- i.e. our Creator... i.e. God. From this position of total love by our Creator (and getting our heads around this part is surely a prerequisite, so don't take it lightly), there is no such thing as death conquering life: as BOTH joy and suffering alike lead to spiritual fulfillment. He alludes to a letter of Julien Green where he posits "whether joy and suffering aren't aspects of the same phenomenon on a very high level. An anology, crazy for sure, comes to [his] mind: Extreme cold burns. It seems nearly certain, no, it is certain, that WE CAN ONLY GO TO GOD THROUGH SUFFERING and that this SUFFERING BECOMES JOY BECAUSE IT FINALLY IS THE SAME THING."

I want to share encouragement to any of you who may be encountering uncertainty or even outright pain in your life. I know I am. But what amazes me, time and again, is how the more intense the hurt I experience, the deeper into the love of our God I am able to enter. That cold gets so very cold that it does indeed turn to warmth.

Nouwen contends that, even tough he gives in (like all of us) to the many fears and warning of the world, our few years on this earth are simply part of a much larger event that stretches out far beyond the boundaries of our birth and death. If we can hold on to even a small realization of this perspective, combined with the peace of being LOVED UNCONDITIONALLY BY GOD, then pain, in a confounding way, loses some of its power and starts to look really sweet... almost desirable.

I say we embrace it when we can and see where that leads us, because I firmly believe that it's a place we all want to be.

DAY 52: Smooth sailing...

2009-02-18T20:48:00.004-05:00

I had an early wake-up today to get to Emory for a little brain chemo and some lab work. My labs looked good... meaning that most of my levels were all high enough to not need any blood products. While I was mentally prepped for a negative side-effects from the brain-poke, it went surprisingly well. I think that when I am well-hydrated, the cards are in my favor. And so it was a good day.

We will head back Friday for another chemo infusion called Vincristine, which is a pretty quick one.

So for a guy who really never took any pills to speak of for thirty years (I would just put up with headaches and any annoyances rather than take anything for it), I sure have had my eyes opened to a whole new world of pharmaceutical living. Here's what I'm on these days:

Neupogen (self-administered shots of E Coli-derived white-blood cell growth factor)
Zofran (for nausea)
Ativan (as needed, for nausea)
Compazine (as needed, for nausea)
Metoprolol (a beta blocker for my heart)
Pepcid (for reflux and stomach issues)
Colace (for constipation)
Acyclovir (profylactic for infection)
Fluconazole (profylactic for infection)
Penicillin (profylactic for infection)
Diflucan (profylactic for infection)

Dang it, y'all - that's a lot to swallow. And most are twice a day indications.

Ok- just a little taste of the fun that we get in the off-season from being in the hospital.

My spirits and optimism are strong as ever. Still no word on six versus eight cycles, but I am holding out hope for the lower end of that range.

Be well, all of you, and thank you for hanging on--

DAY 48: Valentine's Day as an impatient...

2009-02-14T13:40:00.006-05:00

Well I guess to use a baseball analogy for this stay, we're rounding third and have our eyes on home. I am hoping to be discharged tomorrow. I'm on my Orange Gatorage chemo today for 24hrs straight.

I've learned that lavender oil is a great antidote to nausea, so whenever a wave comes over me, I grab Candace's bottle and breathe like there's no tomorrow. So far, seems to work pretty well -- so I'll stick with it.

While I didn't leave my room for the last two days, as I've been feeling pretty darn puny and weak, I did just poke my head into the hallway for a few laps. Felt good to get things moving a little. I guess this is these visits go: I start out feeling somewhat well, and then it takes a few days to saturate my systems with all these cocktails. Then the 'blah' phase takes over.

I got some brain chemo on Wednesday and below are some photos to show how just downright awkward it looks to have a needle in a bald head with some chemicals being sqirt in.

Thanks for all the kind comments from the last post. Thinking that we've accomplished much healing in a relatively short period of time gives me courage to push ahead and is building faith within me at just how powerful our Creator is. There is nothing that is too great for Him in our sight. What a hard thought to get our little heads around... but if we only ask, we may be stunned where He meets us.

Since He loves us unconditionally, He will certainly never abandon us.

Tell someone you love them today... even if you want to claim Hallmark made you do it!

DAY 44: REMISSION?!?

2009-02-10T19:00:00.005-05:00

I didn't know you couldn't chew gum, ok!? I was driving to Emory at about 7:15am today when I suddenly started to dry heave (gag) in the car. I think it was a combination of a completely empty stomach and the visceral reaction to another week of inpatient chemo on the horizon. So what did I do? I fumbled for a piece of gum, thinking surely it would be permissible, since it wasn't food and it wasn't going in my stomach.

When I was walking back to get prepped for the scan, the nurse asked casually, "So what's that in your mouth?"

"It's a piece of gum... I was dry heaving on the drive over and this helped."

"Ooohhhh. So sorry, but that messes up the PET scan. Your body starts it's insulin cycle when you chew gum, and that will compromise the reading. You'll have to reschedule."

"Noooooooo! But I am checking in today as an inpatient, and we need this scan before we start my next round!"

"I'll see if I can get you scheduled for this afternoon. Sorry, still no food between now and then. And take that gum out!!"

Deflated, I moped over to the admissions office and checked myself in for another week. I was assigned to room E716, which has a great westerly view of sunsets and the skyline. Score one for the good guys! I came up to the floor and told my nurse what had happened - and that I needed at some point to run home and pick up my wife and our bags for the week. They asked the normal battery of intake questions, got my port accessed, and then let me run home quickly.

Mr. stomach was not happy about the ever-prolonging fast. We got back and waited until 3pm, at which point they took me down to prep for the PET/CT. If you have never before downed two containers of the barium contrast, you're missing out. Mmmm. Chalk!

I waited an hour for the radioactive sugar to permeate my abdomen. All the while... I was surrendering to God in silence the outcome of the scan. What will be, will be. We'll take it as it comes. Ah! The pride! As if we have a choice otherwise, right?!

So I was called back to 'the tube'. I laid there, supine, with my arms over my head. Thirty-five minutes later, we were finished. I was wheeled back up to my room in the fancy wheelchair. Oh, the perks.

Dr. Kaufman came in, who is the attending physician making rounds this week. He said, "I've got good news and bad news. The bad news is, you can't chew gum before a PET/CT scan. Who knew! The good news is... your scan looks clean. You're in remission."

Wow. God, thank you so very much for having me in the palm of your hand every step of the way. I was ecstatic. To Him be all the glory.

He said that this is good for two main reasons. One, we know the chemo regimen is working, and therefore we'll continue it. He said that his opinion is to continue through all 8 cycles, assuming I can handle it. If what we're doing it working, then it's best to do as much of it as you can stand, to help your odds of a complete cure.

Second, I am an early responder. The odds of beating this cancer (like a drum, I might add) is very high. YES!

Lord, you are so good to me. That I might live a long life as your humble servant.

DAY 43: The eve of Round 3... go Team Stu!

2009-02-09T20:59:00.003-05:00

Tomorrow morning at 7:45, I get a PET/CT scan to make sure what we're doing is working and the cancer is not getting worse. Who knows, could it already be completely gone? I am open to that option. The preliminary plan is to do two rounds of chemo AFTER a scan shows no evidence of the disease. If that comes after 4, we'll do a total of 6 rounds. If it comes after 6, we'll do 8. If it comes after 8, we'll have to stop chemo and look to a plan B... but I am not currently entertaining this option!

After the scan tomorrow, I will walk upstairs in the hospital and check myself back in for the week. I expect to be there another 6 days like the last two times.

I pray this week will be as uneventful as possible... no surgeries, no heart problems, no unmanageable side effects.

My dear friend for the past 20+ years in Nashville got together with some family and other close friends and commissioned a Team Stu t-shirt run! They look great! Thank you, thank you so much!

DAY 39: Time creeps forward...

2009-02-05T20:22:00.004-05:00

Yeah, they put another needle in my head yesterday. This time, like last time, they were unsuccessful on their first attempt. Having given me two pre-chemo meds for nausea, I fortunately did not have such a violent reaction like the last time. This time, however, I did get a debilitating migraine that kept me on the couch for the next six hours. It was like my heart was beating in my temples. Ka-boom. Ka-boom.

What I keep telling myself in those moments is that the pain is only temporary. It, too, will pass. And it eventually does. I am thankful that this is true.

Tomorrow, Friday, I have been requested back at the clinic for the third trip there this week. Same drill: blood draw, lab work, nurse visit, and then IV fluids as needed. I am mentally prepared for another long day. What else would I do, right?

I went to counseling today with a very talented woman who Candace and I have known and worked with for several years. By the end of our conversation, I came to realize that, despite all the blogging and time available for introspection, I hadn't really done too much of that sort of thing. Wonder why not? Hmmm. Did they poke me in the brain in some place that led to this condition? Since I've been 'this way' for 31 years, that's probably not a legitimate thread.

So that's something I intend to do more. Of. (That just shows you how tired I am: I am too tired to rephrase that last sentence so that it wouldn't end in a preposition. I took the easy way out and just added some excessive punctuation. So there. Sorry, Mrs. Kaplan.)

I have some ideas on what's been going on inside my head/heart, but will collect them a bit more and then share some. Right now, I'm a liability on the keyboard so I'll cut this one short and go lie down.

Hope all of you are well. Thanks for giving me a read today.

PS: a challenge for your next day- talk to a complete stranger and see if you can learn one personal thing about them. Feel free to share, if you're so inclined. Some of you know that I tend to do this many times a day... 'cause I love meeting new people and I do have a mouth that can be big. Have fun!

DAY 36: More fluids, fewer staples...

2009-02-02T20:56:00.006-05:00

I spent Sunday afternoon on the couch laid out with a mirgraine and relentless fatigue, but boy was it fun to watch a terrific Australian Open championship match, and then the Superbowl -- both of which went down to the wire. I'm typically not one to follow sports, or spend hours watching them on TV, but that has changed. I'm also following Wake Forest basketball (my alma mater). They're great this season!

We had a clinic visit today from noon until 8pm. We've decided that 8 hours is just about par for the course. Last night, I was so weak, that I had to scoot up the stairs to bed on my behind. I suspected that I was severly anemic based on all the symptoms, but today we learned according to my blood counts that I simply needed more platelets and fluids. So that's what I got.

Since I was not too stable, they decided to push my next intrathecal chemo (brain chemo) to Wednesday, which will be our next visit. Good- I have two more days to think about it -- fun!

I also got my 19 scalp staples removed! I will post a current photo once I get all cleaned up... as right now there's a good bit of dried blood and I know no one cares to see that!

I'm eating carbs like crazy based on cravings for pizza, pasta, bread, bagels, and the like. Not sure why I'm getting them, but I won't protest for now. I was about 190-195lbs when all this started, and now I'm at 175-180lbs. Cancer is certainly not the best trade-off for a little weight loss, but it's a nice perk.

I continue to receive the most generous support from my employer. I am so grateful for the kindness and character that all of my colleagues have demonstrated since the very beginning. I will never forget how they have acted during this time of unprecedented unproductivity in my life. Wow. I am forever thankful and realize just how lucky I am, in light of the current times.

A friend sent me Lance Armstrong's book and I'm already halfway through it. It feels like it could very well be my autobiography. (Well, the cancer journey, not the world-class cyclist part). He is able to capture some of the emotions and experiences quite adeptly, and so I may end up dropping a quote or two in before I'm all said and done.

Ok, my eyelids are getting heavy which means the spelling is about to get worse. Talk to you soon and thanks for keeping in this with me!

DAY 33: Platter of platelets...

2009-01-30T08:54:00.013-05:00

Thursday morning started with an 8am appointment at the Emory Clinic. I had high hopes that it would be a quick in-and-out (meaning we'd be home by lunch), but I was proven wrong. Wasn't the first time and won't be the last! Funny how we set ourselves up for a let-down ONLY when we have an agenda of our own. If we have no expectation, then there really is no disappointment.

Got my arm pricked for the 176th time for a blood draw. I had Alfreda again. She goes by 'Freda'. Freda is a good stick. I am starting to develop relationships with the Pflebotomists. Who'd-a-thunk-it? If I don't think I'm getting any IV fluids or am not scheduled for any IV chemo, I usually don't ask them to access my chest port. That hurts a whole heck of a lot more than a simple arm prick. Too bad I didn't have my crystal ball with me this time.

We then went across the hall for a consult with a nurse practitioner. This usually involves a whole lot of waiting. We ended up seeing one around 11am. The lab work confirmed that my WBC count was decimated (0.3) and therefore I am in the neutropenic stage of the cycle. Through the usual battery of questions, we decided that it probably would be prudent to get a bag of platelets that day. I had been dizzy and light-headed, having chronic nosebleeds, and my platelet count was around 30 (as compared to a low end of 'acceptable' at about 50). I was also most likely dehydrated. I try to drink fluids all day long, but there really is no comparison to getting a bag of saline directly into the bloodstream. So it was time to wait some more.

To pass the time, we went to the Patient and Family Resource Center within the building, and I looked over some Lymphoma books and read some testimonies from other cancer survivors that made me cry. (I seem to well up very, very readily these days. Again, not something I mind. In fact, I hope this folly stays with me.) One concept that was particularly memorable was that one becomes a cancer survivor upon finding out he or she has cancer, not going into remission. So, for me, I would say, "I became a cancer survivor on November 19th, 2008, when I was diagnosed with Aggressive Burkitts-like Lymphoma." I don't know. For some reason that made me feel more tangibly like I could beat this thing -- and that I probably already am.

After our buzzer buzzed, we went back down to the infusion center (the Land o' Grady), got our vitals taken again. I was a fall risk yet again due to my light-headedness, and got the little red sticker on my arm band indicating such. My blood pressure has been low due to my anemia (low RBC/hematocrit)... around 100/65.

We went to our chair and then waited another hour for them to get my paperwork in order. See the theme here? We met a very kind nurse and she gave me some topical lidocaine creme before they accessed my port. Guys, the needle is 3/4" long that they stick in your chest! Right through your fleshy tissue. So this time it wasn't as bad as in the past. Thank you, ma'am.

We sat there for 2.5 hours while the saline and platelets were getting pumped into me. Platelets, which are about 1/10th the size or normal cells, help your blood clot. Hence, my nosebleeds should abate. They are a pale yellow color and the bag looked like a lemon creme sauce.

After the bag of platelets emptied, I started to get a weird sensation on the back of my thighs. Itching. It got worse. And then worse. I tried to scratch a little and then put it out of my mind, but I wasn't so skilled. I then got red bumps all over that area. Then it spread to my arms. It was HIVES! YES! The nurse said that often times people have an allergic reaction to blood products. I got a Benadryl pill and things got better over the course of the afternoon.

We left Emory and got home around 4pm. Wow. Another 'full' day fighting cancer.

One thing I remark on every time I am sitting in the Clinic waiting room is that human sickness is indiscriminate with respect to so many things we typically see as differentiators. It's a great equalizer, or sorts. There are people from multiple races, nationalities, genders, ages, and levels of monetary wealth -- all sitting together in one waiting room, wearinng the same silly armbands, all hoping for the same thing: wellness.

I like to study people intently as I sit there. I note who the patient is, and who the caregiver is. How might they be related? Are they there alone? Do they look like they are in pain? Do they have their hair? Why might they be there? Have they been coming a long time or are they newly-diagnosed?

The rich and the poor, the young and the old, the white and the black and everyone in between, the well-prepared and the ill-prepared, the ignorant and the enlightened, the judicious and the carefree... all somehow got sick and are all sitting there, trying to fix what's wrong. We're not macroeconoic statistics that describe incidence rates and remission rates-- we are all just individual people trying to be healed and live and long, healthy life.

DAY 29: A beloved aunt and uncle...

2009-01-27T07:17:00.008-05:00

Just so you know, when I'm in the hospital... it's not like I'm spending hours upon hours on the computer each day, and deciding as a matter of convenience of motivation whether or not to post an update. It just ain't like that, homey. More realistically, if I have the aptitude or coherence to log on, usually that little capacity is solely directed and posting an update in some form or fashion. So a decent barometer of my level of awareness and stability is the frequency of updates.

Which leads me to this morning. I am clearly due for an update. I feel stable enough -- and so here we go.

The brain surgery went well but the recovery wasn't so smooth. I got really nauseous and vomited several times on Thursday afternoon. They tried to get it to stop, only to resort to a morphine and ativan injection to knock me out. Blah. More grogginess ensued. I got a stabbing headache (the kind you'd feel if someone had drilled a hole in your head?). but I am pleased to say that it has largely not returned since. The 19 staples will stay for 7-10 days and then will come out. Cool. Another scar to talk about! I like scars because they are another reminder that we're imperfect and human and don't need to hold our bodies to such high aesthetic standards as we sometimes do.

So I had chemo, brain surgery, and then went right back to the chemo schedule. On Friday evening, we were told that we could go home when the Methotrexate levels had cleared my body (<0.05). On Saturday morning, they were 0.14 which meant another overnight in Emory Hotel was unavoidable. Ugh. I just wanted to get out of there, so this was a bit deflating. Sunday morning, we were at 0.04 so I started to stage our escape. We headed home around mid-day.

While we knew it was coming, Monday morning we had to get right back in the car and head to the Clinic to get my labs checked, a Neulasta shot (an $8k shot to stimulate WBC growth), and also... drumroll please... my first intrathecal chemo treatment in my new resevoir. That's fancy phrasing for needle-injected brain/spine chemo!!! YEAH! Call the kids in! Just writing that series of words makes me feel sick.

When they tried at frist to stick the needle into my brain resevoir, no CSF flowed out... so they pulled the darn thing out. The guy said, "I'm gonna go get so-and-so, so she can poke you the second time. See ya!" Wouldn't it be nice if addressing lakc of successes in life were this simple to accomplish.

Charise, another NP, came in and a few minutes later had me poked and flowing. CSF came out, then chemo when in. Then lunch came out (of my mouth). I felt like my blood pressure went to half of normal and room started spinning. The throwing up lasted a good while... which gave the Emory folks time to grab a bag of fluids, stick my port, and get the IV pump going. I zoned out for about 90 minutes and slowly felt more stable.

I still have trouble walking, due to all the weakness and dizziness. MY RBC is low, which makes me anemic... which will cause symptoms like this. Also, the high-dose chemo for a week. That will do it, too.

So I'm back at home, after a 7 hour+ visit to the Clinic yesterday. It really sucks that I have to drag Candace everwhere with me and she can't really have a 'normal' day. She is such a thankless helper and never asks 'what's in it for me?'. What an angel. I am just so fortunate.

On to a story of a beloved aunt and uncle. Stan and Marcia Smartt.

Only recently has it has become clear to me what amazing people my uncle and aunt Stan and Marcia are.

Sometimes sowing seeds takes years upon years to sprout and take root. I think this is especially true with children. Over the past 30 years, this couple did so many things for me of which I am only now beginning to see the true beauty and self-sacrifice: driving across state lines to babysit, sleeping-bag camp-outs on their back porch, building model and radio-controlled airplanes, watching crazy old home movies, motivating me to get up on a slalom ski by a $10 double-or-nothing bet, teaching me (and my sister and cousin) how to fly a Cessna 172, teacing me how to fly fish and how to hunt (even if it did fortify my soft-spot for animals and dislike of hunting!), taking old Bumpy Jeep on off-road adventure rides, catalyzing my love for playing the drums (Stan is a long-time drummer, too), buying a ragged-out go-kart and letting me full-throttle it around the barn, always giving creative birthday and Christmas money scavenger-hunt gifts, educating me as a teen-ager about the time-value of money concept through a creative gift offer, introducing me to the truth that God has a plan and laws regarding how we use our money and resources, mailing an original card and letter every month for our first year of marriage,... and did this with an all-around craziness that implicitly gives one permission to enjoy life and laugh it up.

Stan's wife Marcia has the most compassionate and generous heart of any woman I know. She has artistic and creative gifting that shines so brightly. She also has a heart for others that is a paragon of empathy. She is a woman who you will talk to for over an hour, and only then realize you've heard nothing about her, as she has drawn you out and delved into what's dear to you the entire time.

While we don't see Stan and Marcia very often, they hold a place in our hearts that can never be replaced.

When I look at my niece and nephew (Candace's sister's children), I am often reminded of what Stan and Marcia have done for me and my sister.

I suppose the longer the seeds take to sprout, the deeper the roots are hence the less likely the storm will bring down what has grown over time.

Day 26: Needed this like another hole in my head...

2009-01-24T00:00:00.005-05:00

Well I'm pretty much still down for the count from the brain surgery. The good news is that it's highly likley I'll still be able to play the drums and remember most of your last names. I'm pretty happy about those odds.

Just kidding... everything went well and I can sill smile, sign my name, and touch my fingers to my nose (and this is the battery of hospital tests that apparently offer insight into a successful procedure.)

In the interim, my wife has been able to post some great photos and updates at http://candacesmartt.blogspot.com and I encourage you to follow her blog as well, since she has a better (and often more candid) commentarty on this whole cancer journey. The direct link itself is at the bottom-left of this page.

I will do my best to udpate tomorrow, once my brain fires back up. I do have 19 pretty cool staples in my head that will eventually need to come out. I'm going to start the bidding at $19.99 for that honor if there is any interest.

Take care and we'll be in touch!

DAY 24: Quicker than you can say Benadryl...

2009-01-21T15:15:00.010-05:00

I'm here at Emory as an impatient, on day 2 of round 2, and things are going great so far. I'm sitting up in a chair, getting the lemon-lime flavor today (known to the smart people at Methotrexate). I checked in yesterday and they told me it would be the early afternoon before they tethered me up to the infusion pump, so like any good parolee, I bolted from the hospital and had 'one last lunch' at my favorite taco place in the world. The cheese dip never tasted so good.

After lunch, we had a follow-up with a cardiologist about my atrial fibrillation episode during round 1. We got another EKG, which was thankfully normal. Our best guess is that it was a stress-induced event and it may never happen again. One thing I learned was that young people often go into atrial-fib when they exercise too hard or get their heear rate up relatively high. This was comforting.

Also, while my red blood cell count is depressed, I get a little flow murmur whereby the heart is trying to work harder due to the amemia. The sensation is as if you can feel your heart beating in your extremities, and see it visibly in your abdominal area, pulsating with each beat.

Later, in our room, the RN was getting ready to access my port. This involves sticking in the plastic/needle apparatus into my port on my chest -- twice, one in each side. She seemed to know what she was doing, until she counted to three, pushed really hard for a few seconds and then said, "Huh, that's not it." Then she pulled it out. I was incredulous! How could you miss it! She tried again, but preceded it with "I'm not 100%, 100% positive, but I think I know where to go." I said, "I'm ok waiting until we get to 100%, cause that hurt!"

Next, we received a brief consult from a cadrdiologist PA who told us a little more about what to expect from the sugery to implant the Rickham resevoir in my head. She said that they make a crescent-shaped incision in the right frontal lobe, pull back the layers of skin, bore a dime-sized hole through the skull, and then insert a straw-like catheter 5cm into my brain (through the dura mater). When they hit the appropriate ventricle where the CSF (Cerebrospinal fluid) is housed, it will, as she put it, "spew CSF everywhere", at which point they will cap off the straw with a small dome-shaped device that will sit against the skull directly. Then, they fold back the layers of skin and staple me shut. Simple as that.

I have decided to give it a shot, and I go under the knife first thing Thursday morning. As a reminder, this resevoir will take the place of the lumbar punctures (Intrathecal chemo injections) that I am scheduled to get twice per inpatient visit. We'll just put the chemo directly into my brain, ok? Seems safe. Well I guess if I have any unintelligent moments in my future, I have a simple excuse to proffer.

Last night, they gave me Rituxan as my first chemo du jour, and preceded it with an anti-nausea IV and a bolus (IV push) of Benadryl. I was sitting in the chair next to my bed when all this happened... and really wish I had been lying down in the bed itself. Once they push 50mg of Benadryl directly into your heart, it takes literally three seconds for you to fall out. "Ben-a-dr-zzzzzz...." I was hit by the proverbial Mack truck in a flash. Getting from the chair to my bed was just plain sloppy. The evening from that point forward was a fragmented jumble. From 8pm to midnight, I was in and out of the present. Darn-- and I really wanted to watch American Idol, right?

At midnight, we finished the Rituxan and got another bolus of the next chemo drug, Methotrexate-- which has the appearance of lemon-lime Gatorade. We had Orange Gatorade last time. At 1am, we got hooked up for a 23.5hr IV, also of Methotrexate. We also got a steriod that should've kept me from sleeping... but did not. Lots of action; constantly a nurse in the room -- hooking, unhooking, making me swallow pills.

I also give blood and and get vital signs checked every few hours. They check the pH of my urine every time, to ensure it's >7. They don't like to give you this chemo unless your kidneys are operating in an alkaline state. We've been hovering around a pH of 8.0-- which is where we want to be. Not a whole lotta privacy going on.

At 7am, I got a knock at the door, saying it was time to get a CT of my brain as preparation for tomorrow's surgery. I was pulled out of bed and taken down to another floor via wheelchair where I got the CT -- a very quick and uneventful procedure. Back up to the room to rest in bed until breakfast arrived: off-brand Rice Krispies ('Rice Crunchies') and chocolate milk.

Today has been just great. I have walked ten laps, spent some time with a few friends catching up, and been spending some quiet time with Candace. An uneventful day is a great day, in these circumstances.

Tomorrow will be an adventure. Please pray that the surgeons' hands will be guided where they need to go and that tomorrow, too, will be as uneventful as possible.

I am quietly reminded about the goal of focusing on the here-and-now. In this singular moment, life is happening... unfolding... and the story is being written real-time. Not just for me, but for you as well.

This is where all the good stuff occurs: it's not about yearning for some other day, in some other place, under some other conditon. We need not ignore today with the presumptive anticipation of soaking it all in tomorrow. Tomorrow, as with any of the future, is not real...yet; and it may never become. But today is and it's where our focus should be.

Day 21: A little birdie told me so...

2009-01-18T19:26:00.014-05:00

A quick update and then a story. I am feeling pretty darn good these days. I am scheduled to check back into the hospital Tuesday morning for round 2 of chemo, which I anticipate will also require about a week of inpatient stay. This is a B-round, meaning it will involve some new chemo drugs (specifically Methotrexate and Cytarabine).

I also expect to have a surgical procedure whereby they implant an access point on my brain called an Ommaya or a Rickman 'resevoir'. I will tell you more about this later (as I don't know very much yet), but just know that it involves putting a line into my brain for direct injection/withdrawal of cerebrospinal fluid in lieu of getting lumbar punctures, which proved to be very complicated for me the first time around. Stay tuned on this point.

As for the story, I will try to keep it short and simple - as it should be. I was getting out of my car on Friday about to walk back in our house via the garage, and decided I'd take the chance to bask in a little sunlight and stroll around to the front door. Right as I came in view of our diminutive front yard, I saw something flutter in the corner of my eye. It was a little bird on top of one of our fenceposts. It was about 10 feet away.

I took notice because it was surprisingly close and just looked back at me with its beady little eyes. I was more taken aback when it hopped to the next closest fencepost, putting it about 5 feet away from me. It had come noticeably closer than most wild birds ever let us humans get. From this vantage, I could easily see the bright white lines on each of its individual tailfeathers, contrasted by a rich gray tones of its plume. Wow. It was a very stunning, ordinary bird.

I stared at it quietly, fully expecting it to flitter away once it noticed that I was present. But it didn't. We locked into a staring contest. We just stood there. A few minutes later, it dawned on me that 'my' dirt quite possibly served as this little fella's homestead, and he must be trying to thank me for paying property taxes on his behalf. He was squatting on my land. I was ok with it, however, as the grass was dormant, the bushes and trees were fairly unimpressive, and I'd be surprised if there was much he was able to harvest from our little slice of heaven here in the City of Atlanta.

At this point, I continued my stroll around to our front gate, and then down the sidewalk towawrd the front door... all the while giving thanks for all the life that exists around us, in so many seemingly inconsequential forms. At this point, the little dude (the bird), managed to fly right over next to where I was walking (again, about 5 feet away-- noticeable closer than normal). He tilted his fragile head up at me, and then abruptly stuck his little beak into what seemed to be frozen, barren earth.

That little sucker pulled out the longest, juiciest, freshest most alive worm I'd seen. Out of nowhere. I shrugged audibly. He savored every single bite of the squirming earthworm, until it was gone.

Despite not knowing much of the Bible, two 'bird' stories immediately came to the front of my mind. (I had to look up the specific scriptures, of course):

Matthew 6:25-27: "Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothes? Look at the birds of the air: they neither sow nor reap nor gather up into barnes, and yet your Heavenly Father feeds them. Are you not more valuable than they? And which of you by being anxious can add a single hour to his span of life?"

Matthew 10:29-31: "Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows."

That darn little bird finished his worm-lunch and proceeded to hop up onto a low-hanging branch of the small bush literally right next to me, adjacent to our front steps. He sat there -- awkwardly close -- and we locked eyes for no less than five straight minutes. Again I noted how intricate and ornate his coat was. Every feather laid on top of the next with a precision that no human hands could've orchestrated. He was not bothered by the bitter cold winter air, as I was. His stomach was full. He had found plenty to eat, out of the barren and near-frozen earth. He was not worried about what tomorrow would bring.

That second story goes onto say, "So everyone who acknowledges me before men, I will also acknowledge before my Father who is in heaven, but whoever denies me before men, I will also deny before my Father in heaven."

May the Lord of the heavens and the earth be glorified in all that I think, say, do, and am.

On the good days, I will praise Him. And on the bad days, I will praise Him.

DAY 17: Middle-age looks, thrust upon us...

2009-01-15T09:53:00.006-05:00

Well there is no more mystery surrounding what I'd look like if I lost my hair at 50. In the span of about 24 hours, I've managed to age about 20 years. Looks pretty freaky, eh? I am reminiscent of a mid-1990s Billy Bob Thornton of sorts.

I received a phone call from one of my most beloved friends yesterday, during which he quipped, "You're at your house right? Good. So am I... so come on out." Let me also add that this is my one friend who possesses a most prized and lush head of hair out there. It's one of those heads of hair that is years in the making. In the span of a few short minutes, he had managed to level the playing field and consummate an act of solidarity and friendship that I will never forget.

DAY 15: Shedding like a cat... and thank you...

2009-01-12T21:52:00.000-05:00

After Candace and I cross-towned to Emory at 2pm today only to learn there was a scheduling SNAFU on account of the Clinic and we'd be unable meet with an RN, we stuck around to have blood drawn and then headed out a few hours later.

The side effects du jour for me are persistent and unabated bloody noses (the steriod wears down the nasal lining), mucositis (ulceration of the digestive tract which feels like a reflux del diablo), and dizzines that just won't seem to abate. Overall, I think I am doing pretty darn well!

Courtesy a little divine timing, we just learned from Dr. Flowers via phone that my WBC has rebounded from 0.4 on Thursday to 9.8 today! Yee-haw! While my hemoglobin and platelets are still on the low end of average, they are not low enough to warrant a transfusion tomorrow. I am so happy to hear this!

I want to take pause to issue a well-deserved 'thank-you' for the many acts of kindness and gestures of support I've witnessed over the past several weeks since the fun began. Within days of being diagnosed, some dear friends of ours solicited interest among our community to gather a very creative collection of gifts that I will call "Open when you..."

Each of the gifts or cards came with a unique prerequisite, marking a milestone in the process that was notable for one reason or another: "Open when you start losing your hair", "Open when you feel too tired to exercise", "Open when you first miss work", "Open when you regain your appetitie", were just a few.

I've received some great hats (my hair started to fall out TODAY!), some gift cards to our favorite food spots, some great games and knick-knacks... as well as some thoughtful and kind words of encouragement. I am so very grateful for each and every one of these acts of love.

People have selflessly brought us homemade and take-out meals, vats of gatorade, Starbucks for Candace each morning, books, games, letters, cancer-mocking apparel, and have also just come by to be physically present for support.

What a great manifestation this is of the corporate, collective body of a community coming together as a whole to support a need within itself. While many of your have offered to help out and have yet to be able to do so directly-- rest assured that your time can and will come! I will surely lean on you when the road starts to get long and windy.

And for all of you who wanted a squishy teddy-bear to cuddle with tonight, I am attaching a rogue shot of the Emory Clinic MC, 'Grady', who was in full form today. Apologies for the low-resolution shot, but I think the effect comes across nonetheless.

DAY 11: Nadir is here... have no fear...

2009-01-08T21:59:00.006-05:00

"Nadir" (noun- the lowest point; not the zenith). Is our Ralph Nadir here? While I thought I might defy the odds and pass through this round of chemo without a neutropenic episode, today was a bit of an education to the contrary. Since my White Blood Count (WBC) had increased from Monday to Tuesday, I naievely presumed that we would have no inflection points and it would be a simple trend upward. Uh-uh. Nope. Psych.

Today, the first thing the clinic nurse said to me was, "Well, we decimated your whites. That's what happens when we give you poison." She is so smart. On the order of magnitude, my count is 0.4, while a safe count threshold is north of 5. I guess I'm vulnerable right now to an infection of any sort, but the challenge is reminding myself that's the case. I'm a little stubborn.

My wife is the face-police. She hawks over every incidental hand gesture and yells at me when my hands come within breeze of my eyes, nose, or mouth. She has been on parrot-repeat-mode ever since, saying, "Don't touch your face. I saw that. You wanna get an infection? Huh?" I think that last question is more rheotrical, as I don't see the need to answer it. Other than with the roll of my eyes.

Today I had a fleeting thought that I want to share, as it was a stark reminder of how I'm wired and I believe many of us are wired as well. Having spent the last 9-10days with little faculty to prop myself up, I was privileged to come to a realization of my own frailty, weakness, and futility to carry myself forward on my own accord. This conundrum of weakness is really one I hope to explore more in the months ahead.

We're told both with words and inaudibly by everything and everyone around us to be tough in life -- and step up. We have to do this with our jobs, our families, our relationships, and just daily life in general. We all have to do things we don't want to do. This reality is easy to agree upon.

What is less manifest is that, at no point in doing so, should we fool ourselves into thinking that we, in and of ourselves, are the source of any apparent strength. In fact, what I mention above is not really demonstrative 'strength', after all. It's just doing things we don't necessarily want to do. The real 'strength' that underlies is the part I love the most. The strength is ours as a gift of grace and grace alone. It's not organic or home-grown.

If you think otherwise, I challenge you to show me just where you got your strength. If your strength comes from your mental faculties, I ask you where you got those very faculties. Did you earn them? Did you negotiate in the womb and make a winning case for some solid DNA? Right.

Is it physical strength? I will let sleeping dogs lie here, as we all know what happens to our physical flesh in the end. Battleship sunk.

If your strength comes from the many layers that you've built as a result of life's hardships thrown your way, I'd contend that you're possibly just hiding behind a heart of stone and don't really know what a fleshy heart feels like. It's easier to numb out, in fact. May not even be categorized as strength in the first place!

If we are really as weak as I contend that we are, then we have to ask ourselves not only where the strength we get originates, but also why we're the fortunate beneficiaries of this gift. Why are we so beloved? What did we do to earn it? Or what didn't we do?

To bring us back... I had a week-and-a-half of pure, unabated weakness. I was on my face. Crying at the simplest of things. Hearing a line in a song, or a phrase from a friend of loved one. A very sweet place to be. But, it only took one day - ONE DAY - of feeling somewhat 'ok' to pad all of that vulnerability back to where it was. Not completely back, but enough for me to notice.

Why is this? Is it a default pride within? Is it a coping mechanism? Is it a character flaw? A gift? Regardless of what you or I call it, it's real and it happens with me and probably many of you. I get one day of normal life, and the awareness and sensitivity I had just hours ago, is palpably muted.

I want to go back. Brokenness is so bittersweet. It's an emptiness that simultaneously overflows. My in-house strength is so small. I am only a recipient. How I yearn to go back and sit at the place where things that should move me will move me and my own pride will take a back seat.

DAY 9: Leaky joints... flat-out...

2009-01-07T12:43:00.004-05:00

In the words of the great teeny-bopping poetic genius of our time, “Oops, I did it again.” (-B.S.) I have managed to let another few days pass since I proffered a check-in. My apologies. The consistent pattern seems to be that I wake up generally feeling ok, with good intention of cataloguing at some point that day… but then things inevitably change. A wild ride commences, over which I seemingly have little (or no) influence.

Let me bring us current, as best I can. Monday morning started with a requisite visit to the Emory Clinic. The Clinic is an outpatient center, across from the main hospital where I stayed, where people come for check-ins, lab work, and various infusion services (blood and platelet transfusions, outpatient chemos, fluids, etc). At 8:30am, this place was a sheer cattle call. People everywhere, most of them sickly and puny-looking (I include myself in this grouping). Median age: probably 60.

There was a general buzz about the room. The intake process consists of filling out some paperwork, and then taking a seat (or a lean against the wall) in the waiting room area for an unspecified amount of time until your name was called (yelled) by a very portly (don’t mistake with jolly) man named Grady. He was like the Disgruntled Emory Clinic MC, of sorts. Grady had a bald head and a heavy beard and would seem to get very frustrated every time he would yell a name and get no immediate response. “Powell…?” “POWELL????” Then some frail old lady, barely in earshot, would realize her number was up and would attempt to stave off the next accusatory lancing. By individual facial reactions, I would wager that this was the first time many people realized that their very own namesake could be used as an invective. I was sure to listen for “Smartt”. And when they called it about an hour later, I was ready.

They took me back and accessed my port for the first time since I was discharged. This consisted of pulling off the steri-strips (the incision is tender and still healing), poking on it to confirm the type and location of the access points, and then sticking a plastic casing with a curved needle into it in one smooth motion. Prick. Once in, they tape it up to keep me from ripping it out with an incidental arm movement, and then hook up a tube to plug in whatever the soup of the day need be. They took two vials of blood, and promptly sent me back out into the waiting room. The Land of Grady. Another hour-long wait, and the lab work was complete and they brought us back into the infusion area.

What I neglected to mention thus far is how miserable I was feeling that morning. I have learned that so long as I am on my back or lying down, I feel more or less stabilized. Conversely, when I am sitting, standing, walking, or in a car, I feel like the place is on wheels. My vision starts to play tricks on me. Not a fun feeling. As a result, I was a ‘fall risk’ in the clinic, meaning I got a special red sticker on my arm band that indicated such a distinguished privilege.

We spent the rest of the day – and I mean the rest of the day – sitting in a chair in the infusion center, among other elderly and cancer patients. Most of the day was spent waiting on someone to hear back from my doctor on what to do next. I was given a bag of IV fluids, a shot called Neulasta to stimulate my white blood cell growth, and a cup of Coke. (Note that I have been told by more than a handful of RNs and MDs that good ol’ Coke is the best thing for a variety of symptoms. I am still skeptical but will acquiesce for now.)

The ride home from the Clinic at the end of the day was pretty tough. It’s certainly not a straight shot from our home to Emory: lots of curves and turns. It’s also humbling not to be able to drive myself anywhere. Candace has continued to be the most unbelievable helper and caregiver one could imagine. She is truly a gift to me. I am so grateful.

Monday night our pastor Kris came over and gave me a ceremonial haircut. (He's not gifted in this area, but had access to some clippers) They told me that hair-loss is a lot more manageable when the hair falling out is already short, as it comes out it clumps. So Kris gave me a nice buzz. Feels great. He’s a big-picture guy, so we still need to go back in and trim around the edges, if you know what I mean.
Tuesday, Day 9, was a truly wild one. I woke, again, feeling decent, but all that changed when my migraines and nausea returned. It just creeps up on me out of nowhere. Different, this time, was that lying down on my back didn’t seem to abate things. I got to the point where I took a pain pill (my first on thus far – as I try to avoid them) they had prescribed me. It knocked me out considerably, but didn’t really help stop the madness. I was on my back, in the middle of the afternoon, and all of the sudden got a pretty violent vomiting attack. Came out of nowhere, with no warning. In one three-mintue fit, there went all my food and liquids. I was instantly dehydrated and knew that IVs would be needed to return me to stabilized levels. We called Emory and they told us to head to the ER. While I wanted to get back to Emory’s ER, which would make a possible re-admission more streamlined, I was unable to stay in the car any longer than I absolutely had to. Thus, we limped a few miles away to Piedmont (where this journey started with my Appendectomy!).

To make a long story short, prevailing medical thinkers suspect that the many failed lumbar punctures from last Tuesday are the culprit for most of my migraines. Gravity takes over and the spinal fluid leaks when standing or sitting, as opposed to lying down. Other than ‘riding it out’, a procedure called a blood patch was suggested, whereby they try to essentially plug the leaky spinal hole with my own blood… but since I have multiple holes and a delayed response, we’re somewhat forced into a wait-and-see pattern. We were at the Piedmont ER from 5pm until 2am. It was a long, slow night. We ended up getting another round of lab work, a cranial CT scan, and 3 more large bags of IV fluids. We went home and crashed.

Today is a new day and I’m glad we’re moving forward!

DAY 7: Dorothy was right: no place like home...

2009-01-04T21:39:00.003-05:00

Sorry for going quiet since Thursday. I ended up spending the majority of Friday with my eyeballs glued shut, due to a sneaky nausea and vomiting attack that chased me down. Friday was, therefore, more of a 'just get by' kind of day. I never suspected that I would be unable at any point to share an update, but the last few days have proven just that.

They discharged me yesterday (Saturday), and so I was able to sleep in my own bed last night with my wonderful, wonderful wife. As icing on the cake, I was not awoken every few hours for blood draws or vitals. Apart from draining the bladder a couple of times, it was a pretty uneventful night. Thank goodness for that.

The sensation of losing taste buds is very awkward. The only food I really seem to crave is Rice Krispies with banana. Hot foods still annoy me. My mouth has a constant metallic taste which leads me to the mouthwash bottle several times a day. As you know me, I really love to eat... and savor good foods... so this is really a tough thing. The nausea comes and goes throughout the day, coupled with the lack of appetite-- not a good combo.

Ok-- I seem to be harping on the negative and have little lucidity to put cohesive thougths together. I better stop and go back and lie down until a better time.

Thanks immensely for your support and encouragement. While I cannot answer phone calls and emails very easily, please know that I really appreciate you following up on us.

DAY 4: Baby steps...

2009-01-01T21:56:00.001-05:00

Just had my 10 steroids, so it's time to blog. I have found that I get energy for about an hour, and then the fall comes.

Today I had my 6th and final hyper-fractionated (i.e. more than one dose per day) Cytoxan drip for this cycle -- so we will claim a small vicotry while we can. Three days in the bag. The past is now behind us and the future is not yet real, so we sit in the present and marvel and how we're continually carried foward by God's grace and support.

I also am having two chemo drugs tonight for the very first time. I had Vincristine at 9pm and it was a rapid 10-minute infusion. Now, I just started on a 24-hour drip of Doxorubicin. My prayer, yet again, is that these chemicals be 100% lethal to the cancer, yet 100% life-giving to the rest of me. I am supposed to have a Cytarabine spinal tap tomorrow, but since I am still on a blood thinner called Heparin and they massacred my lumbar area on Tuesday, we may punt until Saturday. I am hoping we punt altogether... but will go with the flow. You can only have so many holes poked in your spine before things start to get dicey.

Well the prior 36 hours were pretty slow. I didn't really get on my feet from yesterday around 9:30am until tonight around 7pm. I eeked out 2 slow laps this evening... and that was about all I could handle. But when I cannot walk, the Lord carries me. That heart condition really knocked me down for a bit. With no exaggeration, I had more medications put in my body yesterday in one single day than I have over the cumulative total of my first 31years of life. Staggering thought. After seeing the ball drop, I slept on and off throughout the night somewhat well. I woke up to nasuea in the middle of the night, and they gave me Ativan to quell that and anxiety along with a kidney drug. (We did have 2 helicoptor landings. It made me think that there were some people who had a more unique New Year that even I did!)

Today I realized that I've become hyper-sensitive to all foods, especially hot ones. If something hot comes in the room, I immediately want it removed. Some colder foods, too, make me a little queasy. Those of you who are fond of my penchant for warm foods will find this hard to believe! My diet today consisted of rice krispies cereal, organic sugar-free applesause, and water. It was enough to keep me going. It's a moving target, but the name of the game is: if it doesn't repulse me, then eat it when I can.

There are some words from a book in the Bible, Philippians 4:6-7, that have carried me through some hard moments in the past few days, and it's written on our whiteboard in the room:

"Help me Lord not to be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present my requests to you. And your peace, which transcends all understanding, will guard my heart and mind in Jesus Christ."

In the past days, these promises have now come to life to me, because they are as real as real can be. These aren't just feel-good buzz words that we pull out of our back pocket when we're in a pickle. They represent one of several small pieces of the larger truth that governs the world in which we ALL live. Whether we recognize the existence of somthing or not, that doesn't change whether or not it really is, indeed, Truth! Crazy thought, huh?

The Lord has heard my cry out for Mercy and He has responded resoundingly. For that, I am so very grateful. His promises to me, and you, never come up empty.

My heartfelt gratitude goes out tonight to each of you, as friends and loved-ones, who are walking alongside me this time in life. Your prayers, words, time, and thoughts are selfless and shroud me in even more layers of love and protection. This is just what I need.

DAY 3: An unwelcomed guest...

2008-12-31T19:55:00.007-05:00

Well I now know what an acute atrial fibrillation feels like. We spent all day (from morning until about 6pm) trying to quiet a racing and abnormal heartbeat in my chest. I felt some anxiety yesterday, as I was getting the Rituxan, and figured it would pass. When I woke up this morning feeling an erradic punching in my chest, I knew something wasn't quite right. I told a nurse tech in passing that it felt like I had an aggressive and awkward heartbeat. She reacted by telling the nurse, who quickly told the hemato-oncologist who is covering me in the absence of Dr. Flowers this week. She came in and took a listen with her stethoscope and immediately said it was most likely an atrial fibrillation http://en.wikipedia.org/wiki/Atrial_fibrillation).

They quickly called in a team of cardiologists who performed an EKG which revealed an elevated heart rate (~140 bpm) and a severe atrial fibrillation which meant that the top part of my heart was not consistently pumping blood into the lower half, which would lead to blood clotting and increased discomfort if left unattended. They also called in a radiologist to x-ray my port catheter to ensure that it was not interfering with the walls of my heart. (They ended up seeing that the catheter was too close for comfort, but since I have a port-a-cath, the catheter length is fixed and could not be shortened). The goal became to trigger a cardioversion, either electronically or chemically, whereby they would shock the heart with the hope of getting it back into proper rhythym. First, they had to slow the pulse which was accomplished by two oral pills, one a beta blocker and another a calcium channel blocker. Once the pulse came down, the team decided to try a chemical cardioversion which would take place by injecting a 500ml bolus of ibutilide directly into my heart to try to shock it back. This was preceded by a dose of heparin, a blood thinner, as we didn't want any clots that may have formed to be disloged. With a team of 3 cardiologists and 5 oncology nurses in the room, the moment of truth came. I was pretty stressed out, to be honest. I just clutched a small crucifix and told myself over and over that Jesus is the Prince of Peace and that He was right here in the room with us. The cardiologist was wathcing the heart monitor as he injected the solution and we were nearly compete-- yet the fibrillation persisted. Once he pushed in the very last drop, the fibrillation ceased and we reverted to a normal, stable heart rate. I was so grateful. The heparin will continue for another 48 hours. I have 5 wires attached to my chest that are sending telemetry data a few floors away for remote monitoring. I must say, it does feel great to have a pulse around 70 and no knocking under the hood.

I think I must've held my breath the entire day. It was pretty stressful. I was thankful for a team of knowledgeable Emory staff, and also some very kind guests who came to wish me well throughout the long day.

In the morning, before all of this unfolded, I had a tender moment where I put on my iPod and listened to a song called 'Cry Out to Jesus' by a band of a dear friend of mine. Like clockwork, the tears flowed copiously and I was literally doing as the song called me to do. It was a healing moment over which I had no control. I stared intently at this little crucifix I have been clutching this week and realized at that very moment just how much I love Jesus. Not because of the depth of my need for him in that moment of crisis, but more so out of a realization of just how much He has already done in love for me, for you, for those who have preceded us, and for those yet to come to Him. His promises will never come up empty.

The truth of who He is has become more real to me than gravity. More real that night following day, and day following night. I've said this before, but I will reiterate it again: life will never be the same for me. I've come to know my savior with an intimacy that I've never known possible. He is everything to me. I love Jesus, my Lord, my Creator -- the Creator of the universe -- with every ounce of my being.

Thanks for reading. Today was rough, but in the end I'd call it a landslide victory.

DAY 2: The never-ending epidural...

2008-12-30T19:43:00.023-05:00

(Above are some great cancer goodies I have received thus far as gifts!)

Despite having 10 steriod pills in the evening, I slept fairly well last night! With the exception of nurse visits to take vitals at 3:45am and to change out the IV bags at 4:30am, a peaceful rest was the prevailing tone. The constant click of the infusion pump right next to my head sounds like a percolating rhythmic coffemaker or the cocking of a rifle. It's easy to put out of my mind when it's dark and queit.

Today started with a nice hospital room-service breakfast, courtesy my robust petite. I felt good. No nausea and plenty of lucidity. The food gave enough energy to walk 13 laps around the floor. As I am dragging my infusion pumo along with me, it's slow-and-go at best. The highlight is marking up on a hallway whiteboard another hash mark with each additional lap accomplished. My goal for today was 21 laps (one mile).

In addition, this morning included a melange of Pepcid, Zofran, Allopurinol, and Colaise as prechemo to my 9am round of cytoxan. I get cytoxan over three house, once every twelve hours, for six doses.

I was able to get a few minutes untethered from my infustion pump, who I affectionaly labeled 'TOBAC' (The Old Ball And Chain), who we can simply call 'Tobie' going forward. This meant I could get a shower! YEAH! What a treat! While I was only unhooked from Tobie for about 30 mins, it was a nice element of 'freedom'. They redid the dressing for my power-port so I got to see under the hood for a minute. Wait to you see this thing (see pic below). I now capable of handling injections at up 300psi! What?!? While free, I even snuck in a few hallway laps at a much more brisk pace. I'm up to 18 for the day. May work to get 3more by bedtime. I'm up to 18, so I need to get a few more before bed time.

The PharmD and oncologist came in shortly after lunch and told me I was to get a drug called Methotrexate today, which I had previously thought was only for the B-arm of the Chemo A/B block. Nope. It is a spinal tap where they spidurally insert a needle into the spinal chord to pull out about 12ml of spinal fluid (to test for center nervous system involvement, CNS), as well as leave room to inject 12ml of Methotrexate without over-pressurizing the spinal column.

They had me lift up my shirt and sit on the side of the bed, slumping over to expose and open up my lumbar vertebrae. They felt with their fingers at each disc, trying to find a good candidate. A prick and burn of litocaine was given to slightly numb the area, but they cannon fully numb the entrance to the spinal chord itself. Something wasn't working. They kept asking me to lean over further, or sit up straighter. The goal is to get the tip of the epidural needle into the right place, so that spainal fluid will flow out. After 4 or 5 fruitless pricks into this disc area, we weren't getting anywhere. So they called in a back up. This next nurse decided to try a disc two verterbrae higher. Rinse and repeat. Ouch all over again. After three or four pricks in that geography, some spinal fluid started to leak out, but then turned to blood, which made us call off that effort. It was time to give up for the moment. About 30 mins later, the oncologists's fellow came in and was confident she'd be able to make things happen. We would just go ahead and try the third disc area -- why not! This lady was much more aggressive: she told me to lie on my side and bring my knees up to my chest. She just stuck needles in my spine until I winced in pain. At one point, the needle hit a nerve and shot lightning all the way down my left leg, which numbed it for a good 20 mins. Surely this is not routine! After gritting my teeth a couple more times, we got it! She let 12ml of clear spinal fluid leak out (which will be tested in the lab for cancerous involvement), and over a 5 minute peoiod then injected 12ml of the Mehtotrexate chemo back into the spinal column. My lower back literally looks like a pin cushion, I am told. I feel like an unsuspecting middle schooler who managed to have a sign that read "dart board" taped to his back for a long unfortunate afternoon. The oncologist said that if we have have this much trouble on my next attempt this week, we will negotiate the possibility of implanting a resevoir in my brain, similar to the port, where they can easily draw spinal and brain fluid for testing and to inject the Methotrexate there. We'll see what that involves. Clearly greater risks and benefits would have to be considered. Not too hot on the concept, just yet. Below is a photo of the failed attempts in one of the three areas.

After the the 'back attack', it was time to tackle my first infusion of Rituxan, which notoriously causes an allergic reaction upon initial exposure. Being the only new drug introduced in the last 10 years that meaninfully impacts Lymphoma outcomes, it is critical that I be able to withstand the administration at any cost. After Benadryl and Tylenol as pre-chemo, I starting getting the first Rituxan drips. My resting heart rate was 108 bpm. I saw it beating through my shirt. By the grace of God, we had no complications! They started me at a very low rate of 50mm/hr, and were able to step it up to 100, 200, and then 350ml/hr over the 4-hour process. We just heard the 'beep-beep' from the pump, meaning that the large 800ml bag of Rituxan is empty and a very meaningful milestone has been passed! YES!

I have been drinking copious amounts water all day (about 5-6 bottles and counting). The more I keep hydrated, the less likely I'll suffer any liver, kidney, or bladder damage. To put it in perspective, I have urinated 7,800ml thus far today (and rising). I seem to fill up each jug by the toilet constantly -- I'm sure they just loooove me. Hard to think that I will actually excrete out this cancer. Putrid, yet so simple and beaufiful.

Now I'm getting pre-chemo for my 9:30pm round of Cytoxan (this will be my third dose since I started). I'm basically a pro by now, righ??

I received a daily devotional book from my mother for Christmas and today's entry was right on time, so I thought I'd share it with you:

"I am leading you along a path that is uniquely right for you. The closer to Me you grow, the more fully you become your true self --- the one I designed you to be. Because you are one of a kind, the path you are travelling with me diverges increasingly from that of other people. However, in My mysterious wisdom and ways, I enable you to follow this solitary path while staying in close contact with others. In fact, the more completely you devote yourself to Me, the more freely you can love people. Marvel at the beauty of a life intertwined with My Presense. Rejoice as we journey together in intimate communion. Enjoy the adventure of finding yourself through losing yourself in Me."

While I do truly feel like this specific journey is uniquely my own, I am enjoying a close companionship with others that gives me courage and boldness to push ahead. I guess this is a another manifestation of hands and fee of the true 'body of Christ'. The paramount command to love one another as yourself sounds simple and benign at first (borderline warm and fuzzy), but I see it as one of the most challenging and vulnerable acts we, as humans, can endeavor upon. By loving another selflessly, we are implicitly opening ourselves up to the very real possiblity of unrequited love. Absolutely nothing coming back to us. That rejection is felt at the deepest core of our being. So loving another genuinely as much as we love ourselves (we love ourselves to no end), it a high calling and one to reflect upon.

I am thankful that I am truly loved unconditionally by my Creator, as well as so many friends around me. I yearn to offer true love and friendship in return.

Rest well. Tomorrow is Day 3 and life is wonderful.

DAY 1: In the saddle... er, bed, rather...

2008-12-29T23:45:00.001-05:00

Well I am here in the E wing of the 8th floor at Emory in the main hospital. I'm on a floor with people who are either awaiting or recovering from stem cell transplants. Whew. We made it to the starting block. And today was "Day 1".

I got a wake-up call this morning from the nurse oncologist saying I was on the docket for a 7:30am port placement. After collecting a few overnight items and my file folder that has been widening every day since November 19th, we headed to Emory.

We utilized the valet parking option which made it an easy welcome to the Hospital. After having my blood drawn to run the necessary labs (again), I was admitted into the interventional radiology department. There were several people coughing in the waiting area, which meant masks were in order. Now is not the time to get sick!

I was taken back to a staging area, asked to get in the Emory Healthcare hospital gown (the one with the drafty behind) and then the nurses all came in and asked me the routine battery of health history questions. The doctor came in and told me about the procedure and that it was local anethesia only. Hmmm. All the time, I anticipated it to be general anesthesia. Well, I guess they do this all the time and must know a thing or two.

I specifially asked him what kind of dual-lumen catheter (port) we'd be getting: a standard or 'power' (i.e. injectible) port. He hesitated enough to make me start to worry. He came back and said it would indeed be a standard one, and off we went. I was taken back to the O.R. where the radiologist who would be using ultrasound was prepping the space. There were about 5 people in there, all making inside jokes and hob-knobbing around. Brouhaha galore. The radiologist asked which kind of port we'd be implanting, a standard or power port. No quick reply came. So I sat up from the operating bed and said, "Hey, this is starting to worry me! Let's get this one right, ok!?" After another ten minutes of banter, someone came back into the room and proclaimed that the power port, rather, was needed. Glad we avoided that mix-up.

The actual surgical procedure took about 30 minutes. They shoot a fan of lidocaine into my collar bone area, make an incision by the jugular, trough out some tissue to make space for the port to recess a bit, and then run a catheter line down to the heart, stopping just shy of it. Whatever comes in via these ports goes straght to the main event. I made some pretty stupid small talk with the surgeoun during the procedure, just to keep my cool. It was not painful, but was certainly awkward!

After being taking back out to the staging area where they monitored my vitals for an hour, I was ready to be taken up to my room. The room itself is quite simple. Just a bed, chair or two, TV, and bathroom. There is an infusion pump right next to the bed that permits 4 different liquids to be mixed and infused into the port at once. They can also draw blood out from the port, as well. It's a two-way street.

This afternoon, the nurses gave me some sodium bicarbonate, Ativan for nausea and anxiety, sodium chloride, and Zofran for anti-nausea, Allopuranol for kidney protection, and a stool softener-- all as pre-chemo. I'll be honest, I felt horrible most of the day. It was a mixture of intense fatigue and nausea mixed in with abdomen pains. I don't know why I felt this way, but I did nonetheless. I kept asking myself, if I feel this bad now, how will I feel when the actual chemo drugs start??? As a result, an attack of fear and worry came against me in a very major way. Only after prolonged prayer with my amazing, loving, nurturing, selfless wife and a dear friend did it start to subside. It was very unsettling and I am reminded through this day once again: I must stay focused here. The Lord is my strength.

Not having much of an appetite today, I nibbled on organic applesause, fruit salad, and cereal. I did drink about 5 bottles of water in half a day. The goal is to keep fluids moving through the body as rapidly as feasible. Oh, and I did indeed.

Around 9pm, I got a pepcid to help my stomach react to the first chemo drugs: 10 dexamethosone pills (a steroid) and cytoxan (an IV given over 3 hours). I'm about halfway through this infusion, and feeling ok. I want to sleep, but they will do blood draws at midnight and check my vitals at midnight, 4am, 8am, etc. To boot, my room overlooks the LifeFlight heli pad, so we get an occasional air show from here.

Looks like I will be here about a week. Saturday would be the earliest I would be discharged, presuming my blood counts don't drop off too drastically.

The floor I'm on is fairly small. There are about 20 patients here tonight. 21 laps around the hall constitutes one mile. Over the course of the day, I've done a total of 7 measley laps. That's an indication of my level of energy. I was bouncing off the walls yesterday living in my normal environment and eating at my favorite restaurantes, and today I can barely walk a third of a mile around the hospital and have had a dozen drugs pumped into my bloodstream.

Oh, how quickly things can change! I hope for some rest and peace tonight.

Lock and load. Here we go...

2008-12-28T13:28:00.005-05:00

Well tonight I get to pack for a week's vacation. Probably will be a small bag with some PJs, a few books, a laptop, and some toiletries. Tomorrow morning I will wake up and drive over to Emory and see what's in store for me. I anticipate getting the results of my PET/CT before they give me general anesthesia to place the port in my chest... just in case something unexpected has happened in the last six weeks.

I was told to expect about a 6-7 day inpatient stay each time. This first stay may be a day longer due to the port implantation surgery and longer infusion times necessary, as my individual reactions are not yet known. Who knows. I've got a lot to learn (still).

At this time, I'm very peaceful and looking forward to this season to come. I anticipate meeting some amazing people (fellow patients, nurses, cancer survivors, etc). I can't wait to hear their stories.

Thanks for staying tuned. I will let you know how tomorrow goes when tomorrow gets here. Merry Christmas, yet again!

Christ has come... Merry Christmas!

2008-12-25T23:57:00.004-05:00

I hope every one of you had a joyous day. Today is a celebration of a remarkable event in the history of the world. While I desire to write more intently on the wonder and amazement (greater than ever before) that I now have surrounding the true meaning of Christmas, that will have to wait until a later date - one where I can give it the thought and reflection it well deserves.

But for now, we will hone in on the hours ahead: I'm on the eve of one of the many forks in the road in this journey. Tomorrow I will get a new baseline PET/CT scan that will reveal if the cancer has spread since we scanned it over a month ago, or if something else has happened. We will wait and see. Healing can come in many forms, as time will prove.

My prayer tonight is that God will use me, through this experience, to increase the faith of others. If my infirmity has the indirect effect of deepening the faith of another - if only one single person - I consider it a worthy endeavor.

The larger script in life is sometimes difficult to perceive. I know that I, too often, see it with a finite beginning and end. This is not the case. The divine story is as great as the cosmos, with no beginning and no end. In it, we all play a vital part. Our lives, be them only temporarily in the flesh, have implications both forward and backward that we will not be able to appreciate in this world. For that reason, the importance of building faith in another should take a paramount role.

Far be it from any one of us to know exactly how our role is most effectively played out, but if each of us is open and available to live it out as the Lord sees fit, then His glory will be greater, and ours will be less. And this is a good thing in the larger story of life.

A line in the sand...

2008-12-17T11:17:00.003-05:00

I am scheduled to be admitted to Emory on December 29th. I'll be a first-ever New Year's Chemo Blow-out! Well, that didn't come out right. We don't want any 'blowing out' of anything chemo-related.

They are inquiring to see if I can have the port put in that same day I start treatment. Between now and then, I will get another PET/CT scan to see if the cancer is gone. Hey, no need for all that chemo if it is, right?

Time to savor Christmas -- feeling great -- and to remember what the season of Advent is all about. Something amazing is indeed soon to come.

A busy morning...

2008-12-16T12:49:00.009-05:00

Well I spoke with all three doctors in the past 12 hours. This is good. I even have direct email communication with one of them. He doesn't know what he's in for... just think of all the spam I could send his way.

Ok. So all three agree now that R-hyperCVAD/M-A is the way to go. (The option is still on the table for me to get Vandy's experimental in-house program called MEGA, but I don't yet know if there's enough published info on that to get me comfortable with that treatment option.)

As a refresher, R-hyperCVAD/M-A is rituxan administered with fractionated cyclophosphamide, doxorubicin, vincristine, and dexamethasone, alternated with high-dose methotrexate (MTX) and cytarabine (Ara-C). I think the methotrexate can be administed intrathecally, which means directly into the spine. I'll pretend I don't know about that option, lest I have bone marrow biopsy flashbacks.

So I am leaning towards getting the treatment done at Emory with my Tiger Woods doctor, Dr. Flowers. He just seems to know his stuff. He said I can expect to be in the hospital for 5-6 days at a time, every three weeks, and it will likely be eight rounds total. (Quick math: 8 x 5 or 6 = 40-48 days)

At this point, my hardest decision is how I'm going to spend all this 'down time' in the hospital. Here are my options:
1) become wicked-good at on-line gambling and possibly squander our 401(k)
2) watch daytime soaps, talkshows, and see who 'my baby daddy' really is
3) scour all the notable check-out line magazines to keep on top of what Britney and Paris are up to
4) Explore the Bible more than I've ever been able to, read some educational books, make many new friends, and enjoy being still and silent for a season.

I think the 4th one will prevail. I take that back-- I *know* it will. Those other three options are like cancer in and of themselves.

It's easy to forget that each and every person will react differently to any given circumstance. For example, a doctor who treats ten different people will get ten unique outcomes. Once these drugs are put into my body, the doctors cease to have any influence. From that point forward, the body's cells themselves become the healing mechanism. That fact, alone, should be a miracle to us all. The true remedy here is not some smart doctor with impressive pedigree or the cocktail of particular drugs; rather, it's that each little microscopic cell will do its part to collectively heal me.

If that marvel alone doesn't evidence that we are indeed so wonderfully created, I don't know what does.

OK. The tree of trust is growing and I am so grateful that I'm not going this alone! Follow along. I think we will be glad we did this together.

Cytogenics results: positive for translocation...

2008-12-15T17:20:00.003-05:00

This one will be quick, as I am still trying to process this info and learn what it all means. I think the clock is about to move pretty quickly to start treatment, as I was told this afternoon that my Cytogenetics tests came back positive for abnormal translocation.

What this means is that chromosome 8 rearranges when it gets near chromosome 14. This is called a MYC-rearangement.

As a result, my run-of-the-mill Lymphoma, which we knew to be diffuse large B-cell, is actually a more rare variant (just like Burkitt's) that is called c-myc DLBCL. Roughly 1% of Lymphomas are this type.

I have a lot to learn...

I am part of the 'Reluctant Members Club'...

2008-12-12T21:30:00.010-05:00

Are we getting closer to certainty? Maybe. Here's the scoop...

I received a call a few hours ago from the Hematologist/Oncologicst from Vandy and he relayed two pieces of information. Firstly, he was irate that my Cytogenetics testing (to rule in or rule out Burkitt's) was still not complete and it would most likely be Tuesday. More waiting. Not sure what the hold-up is, but he assured me they were fighting those battles for me as best they can. Hmmm. I choose to believe him at his word.

Secondly, he said that based on the Pathology that Vandy completed, he had a recommendation for treatment that would be consistent regardless of what we learn next week about Burkitt's. He said that my Lymphoma has a 90+% proliferative rate. That means that the cancer is growing very, very rapidly. Most diffuse large B-cell Lymphomas have a 40-70% proliferative rate. Mine is closer to that of Burkitt's (high 90s) and therefore, even if it doesn't have the chromosomal anomalies of the Burkitt variant, it is still considered a 'high-grade' Lymphoma.

He was concerned that the standard R-CHOP chemo may not be effective against these aggressive, hyper-growing cancer cells. If we pursue the treatment consistent with Burkitt's (also a high-grade Lymphoma), then we would be covering our bases.

So what does chemo for a high-grade chemo look like? Well, it's pretty hard-core. It's called HYPER-CVAD. For the spelling bee champs out there, that's "rituximab with hyperfractionated cyclophosphamide, vincristine, doxorubicin, and dexamethasone, alternated with courses of high-dose methotrexate and cytarabine".

There are 8 drugs in the regimen. I would be in the hospital for 3-5 nights every treatment. I would need 8 treatments, three weeks apart. I would need a peripheral inserted central catheter, or PICC line, surgiacally implanted in my chest near my heart to take the IV. Dang.

The list of 'most common' side effects is longer than my niece and nephew's Christmas lists combined. I don't even know what half of these words mean: Myelosuppression• Hyperuricemia• Stomatitis• Nausea and vomiting• Neurotoxicity• Stomatitis• Vesicant• Cardiotoxicity• Hyperglycemia• Gastric irritation• Hemorrhagic cystitis• Alopecia• Insomnia• Constipation• Acute encephalopathy• Pulmonary toxicity• Pigmentation discorder• Diarrhea• Infertility• Hepatotoxicity• Fever• Cerebellar toxicity• Conjunctivitis• Flu-like syndrome• Typhlitis and necrotising colitis.

What I'd like to do, now that there appears to be a hint of art mixed in with the science, is seek yet another opinion from Emory and Piedmont on this approach. I'd hate to under-treat this. In the meantime, I found a great Leukemia/Lymphoma message board that will be a good resource for fact-finding from others in the reluctant members cancer club.

The actual phrase the Vandy doc used was, "If you can put up with the misery of HYPER-CVAD, you should." Misery, huh. Is there such a thing as joyful misery? We'll see.

What's for dinner? My own words...

2008-12-08T17:46:00.017-05:00

Well I just knew at one point I'd have to eat my own words. Not that I'm too proud to do so, but there's just not much to hide behind when things have been quilled out in these cyber scrolls. On my original entry, I ended with, "Let us just sit for a moment, at these crossroads of uncertainty, and meet God right here."

I was just notified by the kind folks at Vanderbilt that they just received the block (my appendix tissue) *today* and sent it off to have the necessary genetic behavior 'MYC tests' conducted by a third party. Even with rush treatment, it will likely be the end of this week until we receive the results. [Thought to self: would chemo on Christmas Day be an option, just for fun?]

So, while I thought I'd pull over at these crossroads for a minute or two, looks as though it may be more like a week or two. Or three. While an immediate reaction could be one of frustration and impatience, I am content due to a comforting realization I had over the course of the weekend: in my 'healing', so to speak, cancer is only a footnote.

What I mean to say by this is that I now see the world through a new lens -- one through which walls of fear, judgement, doubt, and lack of true peace, are cracking right before my very eyes. Some of them are even tumbling down to the ground. While I initially thought I'd have to focus all my faculties on 'beating cancer' and healing my body, I'm quickly learning that the true healing that was needed was a healing of my heart. [Gosh, this is hard to put into words... and sounds a bit sappy. I will resist the urge to try to sound cool here.]

What made this realization very real and apparent to me was that, for the past week, I have felt a peace that I've never known. Let me type that again because I don't want to gloss over it: I have felt a peace that I've *never* known. I'm comfortable in my own skin. I feel physically terrific. I'm more thankful for every waking moment than ever before. I am starting to truly cherish my wife and the bond of marraige [think 'in sickness and in death']. I see the true beauty of friendships. I make no assumptions about tomorrow. I am not ashamed or nervous about sharing my faith in Christ [especially because it is growing in leaps and bounds].

Most of these fears I did not even know I had. Perhaps in seeing more freedom from them I've been able to recognize the hold they have had on me all along.

I would wager that most of what we choose to do, or not do, is driven on fear. What will happen if I fail? What will they think of me? What will I do next if that doesn't work out? What if I don't get what I want? What if they reject me? What if I don't get my way? What if I'm wrong? What if it hurts? What if I just plain look silly? What if they think I can't afford better? What if I'm actually right?! What if I end up thinking that God isn't really there because he didn't answer my prayers?

I am learning that we all have an open-ended invitation to LIVE without fear. Abundant life. Today. Right now. Maybe I'm comfortable sitting at these crossroads becuase I am healing right now in the parts of body that God truly cares about. It's a lot easier to put a finger on sickness in our physical bodies and a whole lot harder to find the other ailments that really do make us live life the way we do.

Maybe this cancer really is a footnote. Being healed of cancer will one day take a distant back seat to the true healing that's happening. I hope you can join me in that for yourself... without the cancer part, of course.

With a twist...

2008-12-03T18:52:00.005-05:00

Our visit today at Emory was terrific; however, I got a call from the oncologist at Vandy just a few minutes ago that is giving me a lump in my throat.

Emory was fantastic. Their cancer center has scale enough to convey comfort to a potential patient, yet is personalized enough to make one feel ‘known’ (not the feeling of steerage I perceived at Vandy, on occasion). I got another blood draw (must be at least the 6th prick since all this started), and then we were greeted by a very nice social worker who sat with us to hear our story. A social worker?! Of course! This is how it should be done: surely someone needs to make sure every newly-diagnosed cancer patient has adequate access to information, is managing the stress/anxiety in an appropriate manner, and has the relational support resources to see them through the valley. The social worker was able to turn us onto some new resources regarding fertility, as well as some support groups that I think we’ll eventually explore.

We then met with the fellow of the doctor we were there to see. She took in most of the nut-and-bolt information on my situation, did a quick exam, and then fielded preliminary questions. Then, the main course was served: Dr. Flowers, director of the Lymphoma program at Emory. This guy… is Tiger Woods! I really mean it—my doctor… is Tiger Woods! He must have a twin. You be the judge:

His mannerisms were even the same. You could swap out the white jacket for a putter and autographs would’ve been in order. And the best part, is that when Tiger wants to win, he wins. I expect no less from Dr. Flowers.

He is on the inside track for Lymphoma research and advancements in treatment. He said that the first thing any person must do is have a professional Heamatopahologist at a teaching institution re-diagnose the cancer as a confirmatory step before any treatment commences. In my case, this is what Vandy was enlisted to do. Remember this piece of info, as it comes in handy later. If indeed it confirmed that I have diffuse large B-cell Lymphoma (DLBCL), then the R-CHOP would be in order. He echoed nearly 100% of what we had heard at Vandy… which fortified my hope and optimism.

I then shuffled across to another building to get an EKG (a few electrodes hooked up to my chest) and Echocardiogram (an ultrasound of the heart) to ensure that my heart is healthy enough to withstand one of the chemo poisons, Adriamycin (which can cause congestive heart failure). I think things looked ok, based on the quips of the technician who was doing the read. I found it humbling to lie on a table and see my very own heart on a screen, beating every single second, without fail. It really is more delicate and fragile than I ever imagined. Truly a miracle to think that it’s working when we sleep, when we’re awake; when we rest and when we exercise… and is one of so many absolutely critical human elements. I laid there in awe. I felt like I was staring a big piece of the ‘life’ in me.

Well after a relatively uneventful afternoon, working from home and trying to ward off an occasional headache, I got an inbound phone call from the doc at Vandy. He told me that the reason he had yet to get back with me was that their Pathologists were not completely satisfied with the reading of my appendix tissue slides. They requested that Piedmont here in Atlanta mail up the entire block (specimen) so that they could re-cut their own new slides, and run some additional stains (tests on the cell patterns).

More specifically, my original path report had noted that the Ki-67 protein had a proliferative rate of 90%. This simply means that the rate at which the cancer cells are replicating themselves is very fast. There is a rare form of AGGRESSIVE Lymphoma (vs. my supposed type, which is an INTERMEDIATE grade) called Burkitt’s Lymphoma that has effectively a 100% proliferative rate. The cells themselves are the same large B-cells. If mine is this rare type, it would require more aggressive and potent chemo – not R-CHOP, per se. Hmmm.

The Vandy doctor then said, “Ok, I need to scare you now. You need to know there is a very high co-existence between HIV and Burkitt’s Lymphoma. Many people who have HIV get Burkitt’s, but having Burkitt’s does not necessarily cause HIV. Are you at risk for having HIV?” Once I clarified with him what those risks are (blood transfusions, sex with an infected partner, intravenous drug use), he deemed it highly unlikely that I would have HIV. In fact, he told me to ‘put it out of my mind, as it would be highly unlikely’. But it was highly unlikely that a healthy 31-year old would get cancer, so while I put it out of my mind, I’ll be honest--- it’s just hiding behind some other part of my brain, still there.

Having broken the ‘no-google’ rule yet again, I’ve since learned that Burkitt’s is either Endemic (common to children in Africa), or Sporadic (Europe/America). While there will be 60,000 new Lymphoma diagnoses this year in the US, only 100 (!) will be Burkitt’s. There were only 12 in Australia in all of last year. Wow, this one is pretty rare. So remember all that I said about being comforted by having one of the most common sub-types of Lymphoma? That may be soon put to the test!

One final piece of info that plays into this Burkitt’s Lymphoma possibility. Well, three pieces, really: (1) it most commonly occurs in young males and adolescents; (2) it most commonly presents in the abdomen; and (3) it most commonly exists OUTSIDE the lymph nodes. You guessed it. All three of those apply to me.

So while I’m certainly going to wait until the pathology confirms or denies the existence of this rare, very aggressive form of cancer called Burkitt’s Lymphoma, I can’t help but think a shift may be happening here. The doctor told me NOT to start R-CHOP until we find out. R-CHOP would not be strong enough to knock out Burkitt’s. Great thought, eh? No topical cream on this one.

More to come… the next few days could get interesting. I trust you are doing well and I cannot thank you enough for being a part of my life at this time.

Blah.

2008-12-02T17:29:00.002-05:00

I feel crummy today. A combo of nausea and a migraine... and I haven't even started chemo. Oddly enough, this is the first time I've actually felt crummy in a week or so. I guess it's a reminder that this isn't going to be any fun.

It's all relative...

2008-12-01T22:15:00.006-05:00

A quick update on me, and then a story. I am going to Emory on Wednesday morning for a third and final opinion on diagnosis and treatment. I don't expect anything too new, but am willing to seek treatment there if they impress us. I am told we have 16 viles in cryogenic storage. So unless Candace wants 17 babies, we should have enough to work with. I say that in jest because there is no guarantee that fertility procedures would even work, but at least we have options there (we think). And finally, in order to make sure my heart is healthy enough to withstand the chemo, I am getting an EKG on Thursday. I would start chemo at the end of this week, or early next week... as planned.

On my next entry, I'll tell you a little more about one of the chemo drugs in particular that really gives me the jitters, as well as some amazing acts of love from my friends. Now, on to the story...

I had dinner tonight with a new friend at one of my favorite local restaurants. He and I are both 'corporate' people, which meant we had enough in common that could go unspoken and leave room for more meaningful discussion. This was the first time we've sat down with one another, which offered a first-time glimpse into each other's lives. What I learned has given me great inspiration.

He has a brother who lived his entire life perfectly healthy until a massive seizure his freshman year of college (1992) revealed a very large brain tumor. After three major brain surgeries and some radiation, things looked promising. Thirteen years later in 2005, after he had been living life as a normal young man, another seizure came which again revealed the reemergence of yet another large tumor in his brain. The best medical minds in the country offered only two options: risk serious infection and death via another operation which would only temporarily relieve the problem; or, do nothing and live no more than a number of months. He chose the latter option, yet is still alive today. He is able to play his guitar and take trips and spend time with his family. This young man is truly living.

Unfortunately, my friend never knows when 'the call' may come, telling him that his brother let go, but he takes comfort in (a) that his brother is continuing to live a normal life one day at a time and (b) that his brother has a relationship with the Lord and knows where life leads us when it ends. My situation looks very simple and manageable in light of his. I am inspired by his perseverance and will to live, even if in stark defiance of all medical odds. I only hope I have the courage to do the same, should I bet met with that same crossroad.

"You do not know what tomorrow will bring. What is your life? You are a mist that appears for a little while and then vanishes." [James 4:14] I tend to react to statements like this with a "yeah, yeah -- I know", but hearing the stories of the present sufferings of others, and even being faced with more uncertainty in my own life than ever before, is widening the door into the place where I know the truth of those words. Tomorrow... if it comes, is a gift, indeed.

A good start to a great day...

2008-11-29T08:12:00.008-05:00

If any of you know me, you may know that I have a hard time being quiet. And, further, an even harder time being quiet and still at the same time. Well this morning, I was rewarded for waking up early and doing so. Bear with me; here is my reward:

--For God, who said "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.

It is written, "I believed; therefore I have spoken." With that same spirit of faith we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present you with his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.

Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.-- [2 Cor 4:6-18]

A guy named Paul, who started out his life as a pretty bad dude, having even murdered people who followed Christ, had a complete life-changing conversion in his heart and subsequently did some truly amazing things for God. He wrote these words and they are as alive this morning to me as they were two thousand years ago to those who seeded of the faith.

Thank you, Lord, for letting a fidgety and all-too-often distracted boy like me have time this morning to sit with you and hear what you're saying to me.

Thanks. Given.

2008-11-27T21:13:00.010-05:00

So I was going 78 in a 60? I was just passing that slow mini-van, really. But how was I supposed to know that spacious 4-lane road was only meant for 60 mph? Well the TN State Trooper decided it was pretty evident and let me have it. And why wasn't I able to find my current proof of insurance in the glovebox? I always keep that stuff in order, but today just wasn't one of those days. Luckily, I have rationalized the fine I will pay as a tax that serves the greater good of that beautiful state and therefore, I can rest.

In some reading today, I learned a bit more about how cancer treatment clinical trails work, what the success rates are, and a little more about other types of Lymphomas (Hodgkin vs. Non-Hodgkin, indolent vs. aggressive growth, follicular vs. diffuse large B-cell). A few noteworthy items: the overall success rate for curing my kind of Lymphoma with R-CHOP is about 50-60%. That's only a little better than the flip of a coin. What gives me comfort is that young age and general good health should take that number upward. I suppose one individual cannot really perceive on a daily basis a few percentage point movement for or against a successful outcome, but I hope to become one extra datapoint that keeps the trend moving upward.

One other interesting thought: most cancers, including prostate, breast, and colon, are on the decline. A few, however, are on the rise: Lymphoma, Myeloma, and Kidney. Lymphoma itself is increasing 3-4% per year, in fact. Why is this? The logical default (apart from people living longer) is there must be a social or environmental impetus. With a million different variables flying around us, we're certainly far too early in the history records to have a clue what it could be. Maybe sticking my head in the microwave wasn't such a good idea. I am kidding, of course. I take solace (sort of) in thinking that a few generations from now, we'll simply rub a topical cream on the area of the skin where the cancer lies within, and things will clear up in 48 hours or less. Won't that be the day. No more leaching!

A final point: in a recent sample of 600 cases referred to Memorial Sloan-Kettering for a 2nd opinion, 18% of initial cancer diagnoses were ultimately re-classified in a way significant enough to change treatment. Wow. That's more 'art' in this 'science' than I would've anticipated. Not that I suspect any changes, but I am waiting to hear back from the pathologist at Vandy who will re-cut my slides and echo a reading on things. Maybe it's benign after all? Either way, we'll be thankful and life will never be the same. For the better.

Well I better get to bed so I can wake up at 4:45am for those door-buster giveaways at Macy's. Riiight. You've got the wrong guy. I guess consumerism is more like cancer than we may realize. Thanks for the read, my friend.

A good day...

2008-11-25T23:38:00.009-05:00

Guess who has no signs of Lymphoma in his bone marrow?? That's right! We heard today these results from the biopsy and were elated. In additon we had a great afternoon with a very nice Oncologist at Vandy who echoed with almost perfect consistency the same treatment advice we had been told in Atlanta. Rather than elicit further doubts, I believe we're on the road to greater certainty and conviction.

One thing that is new info, but not too material, is that there is an indication of the cancer in the lymph nodes near my small intestine/upper abdomen. While this is a 'new' location for seeing the cancer, it still keeps me at a stage II and does not materially change the outlook.

Since this cancer has decided to attack my GI-tract, I will likely need a colonoscopy (a wrong way journey up a one-way street) and an endoscopy (tube going from the mouth down into the upper GI) mid-way through chemo in order to visually see those places, rather than rely on a PET scan.

All in all, the 'R-CHOP' chemo regimen will be the course of action. I will start as soon as feasible and can expect 6-8 sessions with a scan and the 'scopes' (mentioned above) after the 4th treatment to see how things are progressing. What scares me now is just how potent these drugs (poisons, really) are, and what are the lasting effects on the human body. I guess these lasting effects are at least better than those of untreated cancer!

Today, the doctor was very clear: if left untreated, I would most likely be dead within a year. Sobering, indeed. So let's get moving, right?

A reader's digest for R-CHOP:

R - Rituximab is a monoclonal antibody given as an infusion over several hours on the first day of treatment and more quickly with each subsequent treatment, once it's evident there are no allergic reactions. It is an immunotherapy that targets these cancerous B-cells. Side effects can include a harsh infusion reaction, fever, chills, nausea, weakness and headaches. It also can lower platelet and white blood counts, increasing the chance of infection. So, if you're sick or think you're sick, please do me a favor and stay away (for now).

C - Cyclophosphamide (also called Cytoxan/Neosar) is a derivative of mustard gas. It slows or stops cell growth. It also lowers the immune system’s response to various diseases. Side effects can include nausea, vomiting, bone marrow suppression, mouth sores, diarrhea, bladder irritation, alopecia (hair loss) and lethargy.

H - Doxorubicin (trade name Hydroxyldaunorubicin, hence the “H”) is an antitumor antibiotic known as “Red Devil” because it turns your urine bright red. Side effects can include nausea, vomiting, neutropenia (decrease in white blood cells) and hair loss. The main danger is heart arrhythmias and congestive heart failure, which is why there’s a lifetime cap on dosage.

O - Vincristine (trade name Oncovin, hence the “O”) is a “besicant” that causes extensive tissue damage. It interferes with cell growth, both cancerous and normal. Side effects can include peripheral neuropathy (nerve damage, usually temporary), hyponatremia (an electrolyte disturbance), constipation, hair loss, low blood counts and weight loss.

P - Prednisolone is a corticosteroid drug taken orally for five days with each treatment. It decreases inflammation around tumors by interfering with white blood cells. Side effects can include fluid retention of the face, acne, constipation and mood swings. It can also cause blurred vision, increased thirst, confusion, nervousness and insomnia.

So... so long as none of those side effects take hold, and I don't have permanent heart damage, and the chemo kills all the cancer, and I do not relapse, I should be all set. In other words, keep praying.

On a side note, forgiveness is a beautiful thing. I would encourage any of you who may be holding onto something, regardless of how seemingly insignificant, and take it to the place where it belongs: at the Lord's feet. Having a weight lifted from you and hearing forgiveness spoken aloud is enacting freedom. I have enjoyed some very tender moments with Candace today. I've been gifted with a wife who is understanding, loving, and very compassionate when it comes to my shortcomings. Maybe you, too, can re-connect with a friend or loved one (or maybe even un-loved one!) in any areas that need to be let go -- once and for all. I promise you will be lighter on your feet for doing so.

Onward and upward. Let's do this.

Half of something is still something...

2008-11-24T21:43:00.005-05:00

Well maybe the bone marrow biopsy takes a little longer and so the verdict is still forthcoming on that front, but at least we got word back form the PET/CT scan. The good news: the cancer appears to be in my abdominal area only (more or less near my appendix), and is not in my spleen and not above the diaphragm! This is good. So, I'm a stage II if the bone marrow comes back clean. If not, I think I hop up to a stage IV (which I do not want).

Tomorrow is a big day for us. We're heading out early to drive to the Vanderbilt-Ingram Cancer Center in Nashville for another opinion on treatment. From what I've read and seen (a la Google searches), Vandy is a regional leader in cancer treatment and education, and they have some docs who know a thing or two about Lymphoma. We'll be in the car for the first half of the day, and then with the oncologist the second half of the day. What's more, I'm from Nasvhille, so I'll be in the company of my family and some long-time friends.

I've been requested to give 4-5 samples for cryogenic sperm freezing at $300 a pop. Why do these chemo drugs have to be so indiscriminate? I mean, people, please. The prospect of having to wait an indefinite amount of additional time to only have a chance at having children saddens me. I've not yet even begun to allow myself to think about what that grief would look like. My dear wife has to carry this burden with me, and I think it's safe to say that she is as uncertain and unsure about how she feels as I am.

Candace came home today with oodles and oodles of selected 'goodies' from Whole Foods. Everything from vitamins to something that says on the label "Increases Natural Killer Cell Activity". This must be like lightning in a bottle. I'd love to take these horse pills but some of them are so large they could float the Panama Canal. Nooooo way. Maybe with a little yogurt I can coax them down. I am new to pill swallowing, but that's another story for another day.

On another positive note, I was able to connect with a friend of a friend who beat his Lymphoma. He had it 10 years ago, got some chemo + radiation, and has been in remission ever since. There's an unspoken connection when you're able to share stories and fears with someone who has been in your shoes. I imagine that many of you can echo that sensation, for one reason or another.

Rest well, all of you.

Let Monday bring good word...

2008-11-23T21:55:00.003-05:00

Well the weekend fared well, as I am healing from my appendectomy incisions and feel fine overall. Surgery is an easy way to lose a little weight, but it sure isn't the best way! This one will be quick: tomorrow I should find out, based on the PET/CT scan and bone marrow, what stage this little bugger is. It'll be anywhere from Stage I (localized), Stage II (in multiple areas, all below the diaphragm), Stage III (on both sides of the diaphragm, which must be the Mason-Dixon of cancer staging), or Stage IV (in my bone marrow).

Come on, low numbers, low numbers. We'll see. While the staging most likely won't change the treatment protocols, it will have a bearing on our likelihood of success. So, to me, Monday is a big day.

While I feel less and less that I'm writing about someone else and am coming more to a realization that this is a fight I cannot avoid, I know that any fear can be met by the Word and presence of the Lord. And that is my focus. Goodnight for now.

May the Lord bless and keep you.

Bringing up to speed...

2008-11-21T21:35:00.005-05:00

After lunch last Wednesday (11/12/08), I got what seemed like a stomach ache. Thinking it was something simple and temporary, I stuck around the office... in modest discomfort. When I got home, I laid on the couch but just couldn't seem to get comfortable. A close friend of mine who is an ER doctor was kind enough to come by and take a look at me. I was very tender to the touch in my lower right abdomen. He suspected that it was either gas lodged in my digestive system that would eventually pass with time, or less desirably, it could be my appendix.

I tried to fall asleep, despite the discomfort, only to wake up an hour later just after midnight with the most intesnse and uncomfortable pain I've ever felt. It was a combination of being kicked full-on in the groin plus having a thousand pound weight sitting atop my bladder. Natually, I hobbled to the bathroom, trying to go. No such luck. When I stood up, the low blood pressure, coupled with the intense pain, caused me to pass out briefly -- only to utter to Candace to I needed to get to the ER - and quickly.

I was unable to walk down the stairs, so I had to scoot. I must've yelled out to Jesus, audibly, a hundred times. Despite that unbearable pain, He guided me one baby step at a time to the car. Once at the ER, being unable to get vital signs on me, they proceeded to hook up an IV and deliver some pain meds. This was a nice surprise. Five minutes later, I felt neutral to good. Wow. I remarked on how happy I was that someone, somewhere, figured out what we can put in our bloodstream to disconnect us from our pain. What a concept. It took on a whole new importance and relevance when it was me who was being guarded from the pain.

After a CT scan confirmed that it was indeed appendicitis, I was eventually rolled back to a pre-op area and then finally into the OR around 4:45am. The general anesthesia was, again, a marvel to me. They removed the appendix laprascopically. One incision at my belly button to insert a cauderizing cutting tool, another small hole below my belly button to insert a camera/scope, and finally another small hole below that to pump my abdomen full of CO2. Wow.

I was fortunate enough to be the only male who was admitted to the OB/GYN floor for my recovery. Got some funny looks when people would come in and wonder why the male was tucked in bed, while the female was sitting bedside in the chair. Surely something wasn't right about that. I spent a day there. Walking to the bathroom was pretty much the highlight of the day. Oh, yeah, and throwing up was an added bonus. Once able to keep down a little cup of sugar-free jell-o, enough progress was made to get the clearance to head home... which we did.

To fast forward, after some shaking (rigors) and a fever north of 101 and change, I had to head back to the ER two days later for an x-ray and some blood work. This revealed an infection due to the catheter used in the operation. More meds - yyyeah. So back at home, I slowly got back on my feet. I even hobbled into work the Tuesday after. Daytime TV made me do it.

Wednesday of this week is when it got interesting. I went alone to a simple post-op doctor visit at Piedmont where they were to make sure my incisions were healing nicely. And they were. The doctor then added that they had sent the appendix off to the pathology lab, as is customary, and the results had come back abnormal.

In addition to being "extremely enlarged" (instead of being pinky-sized, was >5" long by >1" wide), the cells demonstrated an abmormally active growth pattern consistent with a blood cancer called DIFFUSE LARGE B-CELL LYMPHOMA. Simply put, your lymphocytes are white blood cells that travel in a unique network among your numous lymph nodes, fighting infection and bacteria in your body. Mine are abnormal and propagating much too rapidly. This hyper-growth caused the appendicitis, and was indicative of cancer being in my body.

I spent the rest of the afternoon telling close friends and family. I am ever-grateful to all of these people who droppped what they were doing, sat with me, listened, prayed, and reflected on what I had just learned. Thank you, thank you. While this is only the very beginning, I trust you will be alongside me every step of the way and cannot thank you enough.

The very next day, I had a long afternoon with an oncologist. He said that my type of Lymphoma is a 'good' one to have, as it grows very aggressively, making it more responsive to treatment. While he would stage it (I, II, III, or IV, an indicator of how extensive the cancer has spread), the treatment protocols would largely be the same: chemotherapy.

The spcific regimen is called 'R-CHOP'. This are a cocktail of chemo drugs designed to attack all of the growing cells in my body. He wants us to start in the next week or two. In addition to losing all my hair, it will kill my sperm count for an indefinite period of time. Candace and I have been trying to conceive for a few years now, so this is a particularly harmful side-effect for us. I am hoping I will be able to freeze some ahead of time to have on backup. In addition, nausea and immune system depression are the obvious side effects to chemo that I don't like to think about.

In order to stage the cancer, I needed to have a PET/CT Scan (which I did today) and a bone marrow biopsy, which I went ahead and had done right there and then when I was speaking with the oncologist yesterday. I wanted to check a box -- anything -- to make some forward progress in my journey!

Having a bone marrow biopsy kinda feels like someone sticking a big needle into your pelvis and sucking out some of your bone marrow(!) I just hate it when they do that. I was lying on my stomach, making awkard noises and making rapid jittery movements -- anything to distract me from the sensation of a needle thrust through the walls of my bone or the very life being pulled out, 5 ml at a time! One point worth mentioning, as the doctor's muscles quivered to push the needle through my pelvis, he said, "yep, yep, good strong bones here..." I got a laugh... well after the fact, however.

The PET/CT scan was fun. I got an IV with a radioactive glocose inserted into me. It is a fluouride solution mixed at a nuclear pharmacy within hours of being administered into the bloodstream. After 45 mins of sitting still (no reading or iPods allowed, as the mental activity would draw too much blood into your brain), I laid on a thin gurney, with my arms above my head, for 30 mins in 'the tube' -- completely still. It was interesting to see just how stong the mind can be when you feel the urge to scratch several itches -- yet cannot.

And so here we are. 48 hours +/- after my world got a little more interesting. Thanks for sticking it out thus far. This blog will probably be the place to get an update on how things are progressing with my chemo, and hopefully I will be able to capture some of the sweet moments, called life, along the way.

I feel, at the outset, that this entire experience will be a faith-building (and strengthening) experience for me and hopefully those around me. Having no choice but to slow down in life will force me to connect my head to my heart a little better, and really tabernacle with the Lord in the here and now. That's really the only place that He can meet us: not in the nostalgia of the past, or the fear of the future... but right here, right now. There is no grace for events that never come about, so let us not spend any time worrying about whether they may come or not.

Let us just sit for a moment, at these crossroads of uncertainty, and meet God right here. To Him be all the glory. It is well.

Sell-out!

2008-11-21T21:17:00.000-05:00

Well I suppose getting cancer is enough of a reason to start a blog, eh? So, here we go... more to come. Thanks to all who have taken a moment to read along...