Anything worth doing is worth re-doing...

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

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

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!

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

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.

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

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.