Long time coming...

So it has been a year since my last post... a very eventful and fruitful year... and one that has by no means been uneventful from a health and growth perspective! I have probably been running away from something; but not exactly sure what. I can share more on that front later, but in the meantime, here is a short update. Last night, my sister told me of a John Piper excerpt called "Don't Waste Your Cancer". Each of the take-aways resonate loudly within me:

1) We waste our cancer if we don't hear in our own groanings the hope-filled labor pains of a fallen world.

2) We waste our cancer if we do not believe it is designed for us by God.

3) We waste our cancer if we believe it is a curse and not a gift.

4) We waste our cancer if we seek comfort from our odds rather than from God.

5) We waste our cancer if we refuse to think about death.

6) We waste our cancer if we think that `beating' cancer means staying alive rather than cherishing Christ.

7) We waste our cancer if we spend too much time reading about cancer and not enough time reading about God.

8) We waste our cancer if we let it drive us into solitude instead of deepen our relationships with manifest affection.

9) We waste our cancer if we grieve as those who have no hope.

10) We waste our cancer if we treat sin as casually as before.

11) We waste our cancer if we fail to use it as a means of witness to the truth and glory of Christ.

A Marriage Journey With Cancer: Stuart and Candace Smartt 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anything worth doing is worth re-doing...

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.