New Meds

I started taking some new medicine. It’s for the nerve damage in my feet, the peripheral neuropathy. We tried a few non-prescription cures, but they made no noticeable difference.

When my Oncologist first recommended this medicine, I asked what the side effects are. Remember when you were a kid, and you got sick, and your mom gave you medicine and you got better? Side effects were an unknown concept. I miss that.

My doctor gave me a print out, “Patient Drug Information.” When I first read it, I said I would never take this medicine. Then I thought, maybe I should never say never, and try it only out of desperation if it came to that.

The print out listed all the standard possible side effects including signs of an allergic reaction, hives, itching, red, swollen, blistered or peeling skin (with or without fever), wheezing, tightness in the chest or throat, trouble breathing or talking, unusual hoarseness or swelling of the mouth, face, lips, tongue, or throat.

I highlighted some favorites on this full page of possible side effects, and I came to realize that I may not have the proper perspective on this . The doc didn’t hand me a list of side effects or Patient Drug Information,

she handed me

A FREE PASS.

Let me explain. Included in my favorite highlighted possible side effects is HOSTILITY. At first I thought, oh-no, will this make me hostile? But that’s the wrong way to look at it.

If I need to dispense some hostility, there’s no apology necessary, I would simply whip out the Patient Drug Information sheet and point to the highlighted lines. It’s a side effect!

PROBLEMS WITH HOW ONE ACTS, is another highlighted favorite. Yes, it actually says that. I suppose I can act how ever I want now, it’s a side effect.

CHANGE IN THINKING CLEARLY AND WITH LOGIC.

Who cares! Side effect!

Here’s another favorite, NOT ABLE TO CONTROL EYE MOVEMENTS. There was a term we used to hear more often, that a guy was, “Shifty Eyed.” It usually meant he was suspect, probably up to no good.

Now I can be shifty eyed, have a problem with how I act and think, I can even get hostile and if anyone has a problem with it, call my doctor, it’s all side effects!

There’s one more I highlighted, TWITCHING.

At first I thought this could be really bad, but, you know, I’ve never been a dancer. If I get this side effect, and the music is really loud, I could be a cool dancer beyond my dreams.

If anyone would suggest that my dancing is kind of stupid,

hey, it’s a side effect! Care to join me?

Something is missing……

A burden is gone, and I don’t know where it went, or exactly when it left. I just realized one day that it had disappeared.

When you’re diagnosed with cancer, it puts a sharper perspective on your mortality. Everyone knows they will one day die, but having cancer brings that “one day” into sharper focus. When your next diagnosis is an incurable cancer, that “one day” almost seems to be lurking near by.

The thought of death was constantly on my mind, it was always there. Always. It became exhausting. No matter where I went or what I did, the thought of impending death was involuntarily foremost in my thoughts.

It was not the fear of death, I know the one true God; it was the reality of my impending death. That notion monopolized my mind for months, and then one day I realized it was gone.

I’m not sure what changed. Maybe I just wore the idea out. Maybe the “hope” my treatments have brought has kicked that “one day” a little farther down the road.

*It was great to have Robin home for 10 days in October*

My medical insurance is now covering Revlimid, which I am taking daily as a low dose maintenance medicine. I mentioned in an earlier post that my insurance company refused prior authorization for Revlimid as part of my chemotherapy and suggested my doctor use something they determined to be a “better overall value.”

I got a little angry at that, thinking my life might end sooner because they wanted to use a cheaper drug. I would leave this earth, arrive in Heaven, and God would turn and ask me, Scott – what are you doing here so early? I had a couple more years planned for you but I guess that darn insurance company messed things up!

I realized again that God knows the exact number of my days. The anger went away.

Walking Again

I’ve been to the Oncologist for my “three month after the stem cell transplant” visit. The blood tests came back showing my M-Protein is now 0.2. That number has been as high as 1.8 in January, and down to 0.5 after Chemo treatments, before the transplant.

My Oncologist said she wants me to begin taking a daily low dose of Revlimid. She said cancer patients taking this maintenance dosage have longer periods of time between transplants. I asked how many transplants I might look forward to. “Just one more,” she said.

“Bone marrow won’t support more than two. But,” she continued encouragingly, “If you get two or three years from this transplant, and two or three more from the next, there may be new treatments available by that time.”

I found that due to the peripheral neuropathy in my feet, I sleep best with my feet hanging off the bed, toes pointing to the floor. There’s no perceived pressure from the blankets that way, and little discomfort.

I’ve started walking to work again. It hasn’t increased foot pain, so maybe overall it’s good. I’ve added three daily doses of L-Glutamine to my Multi B Complex for the neuropathy.

I’ve been taking it for a week or so, it might be helping a little. I will have a moment here or there when I realize that I have not been aware of pain in my feet for a full minute or more. That’s a (painless) step in the right direction!

*You can’t buy a duel altitude, multi-range color hair style like this!*

Closer to Normal

Summer 2013 in Oregon is circling the drain. I took the box fans out of the upstairs windows and put the electric blanket back on the bed.

My summer was a paradox, creeping along unbelievably slow, moment by drawn out moment in the hospital and in recovery, but then I looked up and suddenly the summer days are gone!

I’m feeling closer to normal and farther from death; although I know it could be waiting in the next crosswalk. But, it could be waiting for anyone there and has nothing to do with cancer.

*Working full time and ready for high water*

I just had my six month visit with my urologist. He said my PSA (indicator for prostate cancer) is non-existent, that’s great. He said I’m halfway through the danger zone….. If the prostate cancer doesn’t come back within five years, it’s highly unlikely it will come back.

I doubled the dosage of my B complex vitamins and it does seem to be helping with the chemo nerve damage / pain in my feet.

My oncologist said next visit, three months from the transplant, they will test for cancer indicators. I thought, with all these vials of blood you’ve taken – what have you been testing for?

We were clicking through TV stations the other night, looking for a reason to stay up ten more minutes, when I saw an eerily accurate representation of my new hair style: it was little Ralph Wiggum on the Simpson’s.

I’m afraid I won’t be able to identify with him for long because in the mirror I see little black seedlings sprouting among the wispy white survivor hairs clinging to my head. This could get interesting.

I remain, as always, thankful to God.