Video - Stuart and Candace 2009: A Journey

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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...

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...

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?

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...

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...

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...

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!

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...

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.

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!

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

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...

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...

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...

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...

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...

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...

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)!

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...!

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!

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...

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)...

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...

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...

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...

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...

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...

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?

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?!?

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...

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...

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...

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...

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.

DAY 117: Neutropenia and nosebleeds...

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...

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...

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...

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...

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...

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...

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

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...

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.

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

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

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

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...

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...

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...

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.