Battle with the Silent Killer

Monday, July 17, 2006

And I was so excited to be on the Xyotax branch of the study!
I was going to get my hair back!

And so I have. I've actually even had it cut a few times (short hair is very nice in the summer!). They (the infamous 'they') said that it would come in thicker and softer and curly (though the curl might not last)... possibly even a different color.

I was sort of hoping for brown, or at least not having any more white hairs. But, that didn't happen. Though it is very, very cute. For the first time in my life, my hair has body! When I go to wash my face in the morning, while I'm running the tap for the hot water to arrive, I take the running water and wet down my hair and comb it. Once I've washed my face, I comb it again. And, when it dries, voilá, it bounces up! No blowing, no gel required! The hair by the nape of my neck is so curly, I've had it cut back! It's pretty amazing.

It didn't change color, or recover from 'going grey'. But, it turns out that I actually like the highlight of the silver hairs as they feather back over the short hair. A lot of people pay good money to have hair that's like mine right now.

On a darker note, though, the neuropathy that I felt in March spread to both hands and became more and more severe. It got to the point where, occasionally, my hands would just feel like they were on fire. Bad enough to take pain medication.

Right before my third Xyotax treatment, I seriously debated quitting the trial. It was a painful time: weighing an unknown risk (how soon would the cancer return? would the neuropathy become permanent?) versus an unknown benefit (would this mean the cancer would never return?). After painful deliberation, I decided to continue with the trial. I was up to taking 4 gabapentin daily for the neuropathy, not even knowing if it was helping, because the neuropathy was so severe.

I've got fluid retention in my fingers (still), so that it is painful to make a fist. My typing is somewhat problematical (a challenge for a web developer). Fortunately, I don't have to look at my fingers to type, so I can watch the screen and see when/if I've made a typo (plus, I'm kinesthetically aware enough that I can sort of 'feel' when I've made a mistake).

However, just before my fifth treatment with the Xyotax, things were worsening. I began to have difficulty buttoning buttons (what they call ADL: Affects Daily Life). When placing the pills in my pill boxes, if I dropped one in the wrong section, it was very difficult to retrieve it. Not to mention the typing problems.

The decision to continue in the trial was taken out of my hands. They've officially booted me. I'm still going to be monitored, with a CA-125 taken every four weeks (my last reading was down from 11 to 9, so that's very good!). I must confess that, though I was determined to continue at any price, I felt great relief, to have the decision made by someone else. To stop.

It's been seven weeks now since my last treatment. Now, I can concentrate on getting well from the Xyotax. "My maintainance crew is repairing the collateral damage to my peripheral nerves much faster than anyone would have expected." I think I've had some improvement to my little fingers and the ring fingers may be coming back slowly.

In the mean time, the lymophdema to my left leg is still active (after all, the surgeon removed all the groin lymph nodes on the left side... there's nowhere for that lymph to go). So, I wear these compression hose (which I don't really like; and they're really hot in the summer!) I'm not as compliant as I should be. And, when I go to dance practice, I'm not able to do all the dancing I would like. The lower leg just gets too 'full'.

On a positive note, I was able to finish Bloomsday in early May. My goal was to average 22 minutes per mile (as opposed to 15, argh! let alone see a return to running). I was able to finish at 21½ minutes per mile. As usual, though, I haven't kept up with the walking and need to return to it.

Before the cancer, I had dropped 35 pounds. With the consumption of chocolate and the lack of aerobic exercise, I've put it all back on. But, as they say, I'm still above ground, sucking air, and that's (supposedly) a good thing!

Battle with the Silent Killer
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Darbie Marlin
West 524 Euclid Avenue
Spokane, Washington 99205, USA
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