Thursday, November 12, 2009

My MS Story Chapter 17- There Will be Blood

Roulette Wheel 08
Image by marc e marc via Flickr
I was entrusting my healthcare to complete strangers, and these strangers didn’t even know what substance they were pumping into my veins. Maybe it was a powerful immunosuppressant, or maybe it was sugar water.

I’ve always been a bit of a risk taker. You probably know several people who’ve had laser eye surgery. Maybe you’ve even had Lasik yourself. Back in 1993, before laser eye surgery was available, I allowed an ophthalmologist to reshape my corneas by hand using a procedure called radial keratotomy. (Dr. Werner, wherever you are, I hope you eventually had your medical license reinstated. You got a bum rap.) As you can see, accepting risk in return for potentially significant rewards was not exactly out of character for me. By the way, I’m now on year 16 of not wearing glasses or contacts. I hated glasses and contacts. I hate MS even more.

Roberta, Kathy and Peter, employees of UMass Memorial Hospital, would become very important people in my life. Over the coming years I would see more of them than I would of anyone other than my wife and kids or coworkers, and certainly more often than I would see my local medical team.

Kathy, the trial coordinator and a nurse, was my primary point of contact and eventually my good friend. Within five minutes of meeting her, she was poking around my arms and hands looking for a vein from which to extract a blood sample. Because the trial protocol required so much patient health data, Kathy became bloodthirsty. I wonder just how many vials she filled over the next couple of years- too many. This blood collection adventure didn’t go smoothly at first.

Kathy was not an experienced phlebotomist. She understood the basics of taking blood samples and was technically qualified. Clearly, however, this was not her area of expertise. To complicate matters, I don’t give blood easily. I've managed to frustrate even the most veteran phlebotomists over the years. My veins are just not visible. If you determine where there might be one, by feel, the vein is likely to roll out of the way when you poke it with a needle. After a couple of months, however, we identified a magic spot in my right arm where Kathy could almost always strike red gold on her first try.

Roberta was also a nurse. She administered two tests called the MSFC and the EDSS (more on them in later posts). These were the primary tests used to evaluate the condition of the trial participants by measuring feats of strength, dexterity, vision, and cognitive ability. Roberta was a lovely lady- pleasant, engaging, and always professional.

Peter was the medical director of the MS clinic. He was both an MD and a PhD, as this was a teaching hospital. Peter was absolutely brilliant. He was a renowned leader in the field of MS treatment, but remained down-to-earth and unassuming despite his lofty credentials. He even asked that everyone refer to him by his first name.  I wonder sometimes what sort of doctor decides to specialize in MS. Why not choose a less depressing field where you occasionally cure patients, like maybe oncology?

On June 2, 2005, on my fourth visit to Worcester, I received my first infusion. In my previous post, My MS Story #16, I described my serious reservations about sticking with this trial for 2 1/2 years if I suspected that I was on the placebo instead of the trial drug. Before my first infusion I had studied the side effect profile for Rituxan, which was well documented. If I was on the trial drug, all was well. If I was on the placebo, all bets were off.

During the first infusion my blood pressure slowly dropped and my body temperature steadily increased. These were both classic Rituxan side effects. In fact, as I later learned, if my temperature had risen any a higher the nurse would have suspended the infusion. On the drive home I spoke with Kim about whether or not this was conclusive evidence that I had just received an infusion of Rituxan. I wondered, “They wouldn't give me a placebo that would raise my body temperature, just to throw me off track, would they?”

Later, before we had arrived home, I developed a significant headache. I didn't remember reading about headaches as a side effect. When we got home I pulled up the information I had on Rituxan. How had I missed it? One of the primary side effects of the initial infusion of Rituxan is a headache. I was inching ever closer to concluding that I was on Rituxan. There was just one more piece to the puzzle.

With Rituxan treatment, any reactions you experience during the first infusion are typically not present at the second. Two weeks later, on June 16, 2005, I had my second infusion. Sure enough, I had zero side effects. I was convinced. Hooray! I was getting the real thing. I had some hope of stabilizing this damn disease.

Stabilization was the ultimate goal of this treatment. Suppressing the B cells in my immune system, which is what Rituxan was designed to do, might slow down or even stop the progression of my disease. There was no reason to believe that any of the damage already done could be reversed by Rituxan. With a progressive disease like MS, the primary goal is to halt the damage- to stop the bleeding. If you can do this, you can buy time while you wait for some medical advancement that will repair myelin and re-grow axons.

That's all I was doing by participating in this trial. I was just trying to stop the bleeding.

For the next installment in this series, click here.
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  1. Hi Mitch,
    A good post thanks.
    Sobering thought to be reminded once again that all meds do is perhaps slow down progress of this shitty disease if you are lucky.
    Have a good afternoon/evening.

  2. Herrad,

    Thanks for dropping by and saying hi. Stopping progression and repairing damage are really two different things, and will almost certainly be two separate treatments. We may one day be "cured" of MS (damage stopped), without any improvement in function (no damage repaired).

    Or conceivably a repair mechanism might come along that fixes damage faster than MS causes damage. We won't be cured, but we'll be getting better.

    Right now we have neither. Here's hoping that some day we have both.

  3. I hope time is on your side. I have been "buying time" for 20 years now.

  4. Diane,

    Please give me the address to your time store. My time store went out of business due to the economy.


  5. Hi Mitch
    Please come by my blog and pick up your awards.