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!