Here’s an update about how I’m doing.
I’m feeling OK, but I’ve been a bit scattered; I’m having trouble focusing. One reason? Check out all these pills I took last night at 5 PM–just one of four different cups of fun:
It isn’t the number of pills; I take this many and more at home. Supplements mostly–I’m allowed very few supplements here. No, these pills are are powerhouses.
The large one is acyclovir, an antiviral to help prevent shingles. I always take one of these. I also take the little red one at the bottom, Xarelto. We use the controversial blood thinner. Advantages over warfarin include far less blood work and a short 24 hour per pill turn around. So when I knew my PICC line was scheduled to be placed, I didn’t take it the night before. I would have needed three or four days to allow my blood to thicken up with warfarin.
A commercial from a law firm about soliciting patients who have had bad experiences with Xarelto just played on a local Iowa broadcast. Doesn’t exactly fill one with confidence, does it? But I’ve been taking it for almost two years with no incident and very little bruising.
The blue and beige pills are my dex. A lot of dex. 40 mg worth four days in a row. I’m wired but also tired. Stomach tied in knots.
The white pill? Ah yes. That’s the experiment. I’ve used oxycodone ever since I was diagnosed. Just enough to take the edge off the bone pain. Several other patients–and a drug rep I know that used to work for the company that makes oxycotintin–recommended I switch. Ocycontin is a time release form of oxycodone, designed to work over 12 hours. That means I wouldn’t have to take my little white, 5 mg tabs along everywhere I go; breaking them in half and taking it every two or three hours.
Why didn’t I ever make the switch? For one thing, oxycontin is even more tightly regulated. Think I get “looks”now when I turn in an oxycodone script? Double it. Another reason is the immediacy of oxycodone. 5 minutes and you’re good to go. I’m comfortable with oxycodone.
But three weeks in the BMT unit? I’m not allowed to self medicate. So they bring an oxy in, I break it in half. Then they dispose of the unused half. And every three hours? Not very practical. So Dr. Tricot recommended oxycontin. I’ve been taking it now for three days. It works. but I think it’s the primary reason I’m not able to focus. Everything else I’m taking, I know how my body is going to react.
I’m hoping my body adjusts. Because it really works. No breakout pain since I started taking it. And oxycontin is supposed to work better with time.
I am constipated. Another side effect? Maybe something to adjust to after I get home. But I’m not worried about being constipated now; the diarrhea is sure to start after Tuesday’s second melphalan/Velcade infusion, then all of the orange preservative from 22 bags of stem cells. Any guesses on the color of my urine and stool after that?
My peripheral neuropathy(PN)? Let’s face it, I’m taking the two myeloma drugs with the worst PN reputations. Sub q Velcade didn’t cause much PN for me. I was close to screaming, “no mas,” while taking it IV–most likely being forced to stop taking it. So here? Velcade IV, of course. Only four infusions. I accept it as part of the “nuke my myeloma” plan. Toss in 11 doses of thalidomide (most likely the worst PN culprit) and we’re playing with PN fire!
Another reason I’m thankful for oxy in any form. I’m lucky it works so well for me. I understand some of you can’t take it, making you sleepy or loopy or both. The things we do to try and stay alive. Mysteriously, the oxycontin I’m taking seems to control my PN better than oxycodone. But it’s early. So far, so good.
I’m staring up at the extra large blood count chart on the bulletin board at the foot of my bed. A sobering reminder about what I’ll be facing soon. My counts have already started to drop following the first melphalan infusion. Tuesday is the second big day: melphalan, Velcade, thalidomide, dex.
I’d better get some work done today. My sister, Joan, is here for the week. Think I’ll put her to work, too. That is, if she hasn’t committed hari cari (sepuku) following the Cub’s playoff loss last night. She’s a die hard Cubs fan.
Even though I’m originally from the Chicago area–north side suburbs–I grew up a White Sox fan. Not an easy thing to do living on the north side–that’s Cubs territory. Anyone from Chicago knows you can’t like both teams. It’s a rivalry. I hated the Cubs! Now? I hope they do well. No hard feelings. After all, I’ve been away for almost 40 years.
Silly things like this make me want to live even more. Time to knock out my myeloma long enough for T cell researchers to perfect ways to ramp up our own immune systems for a cancer fighting assist.
Yes I can! So many of you remind me of that every day. Thanks for that.
Feel good and keep smiling! Pat