Hello folks.
It seems the Adriamycin et. al. takes a couple of weeks to finish mangling my cells. My hair, which was about 70% back in, is now falling out in clumps. I'm back to looking like Jason Voorhees, which is a pity. I will have to shave the head sometime soon, although I never completely lost the hair on the back of my head so I'm still hoping maybe there will be some coverage. I know it's probably dumb but it makes me feel like it is closer to coming back if there's something there. Although it looks appalling so there will be baseball caps for my foreseeable future.
I've had a host of other side-effects. Vision is a bit blurry beyond a few feet, I'm extremely tired, I have a hell of time getting a decent night's sleep (have been relying on Ambien the last two nights and I'm scared to go off it) and had a day of intense gastrointestinal distress. It seems odd to have all this happen two weeks after the cessation of the chemo but these things do bad stuff to one's body.
Oh...and the placement of the portacath is still swollen like half a tennis ball and it hurts like a sonovagun. Big scar will probably develop there, too. I'm not terribly pleased about it -- it's far too swollen to think of using it for labs at this point. Hopefully it will come down in the next week or so -- it's still only been six days since surgery.
All right. Now to the good news.
My M-spike is still not zero, but it is now less than trace. It is formally marked on the labs with an asterisk, and the statement "we cannot exclude the presence of monoclonal protein, however none is observed." I was so pleased with this report, which I received from my APN Kristin over the phone, that I didn't ask her about the immunofixation test (which obviously is still positive otherwise there would be a true zero for the M-spike, but perhaps that is the only reason why the M-spike is held at an asterisk?)
At any rate, I am pretty sure that I am formally, now, in near complete remission. Hopefully the M-spike will continue to drop, and when I resume labs (once the swelling goes down and they can find the port -- I didn't go through all this just to have them stick my arm) I'll get that much-desired zero reading. It certainly seems headed there.
I need to start physical therapy eventually, but right now my shoulder hurts far too much to contemplate it, and it affects every moment I make, with the sole potential exception of a stationary bike. I'm going to see where things are in a couple of weeks. I'm still too tired, I think, to do much of anything.
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Editor's note: Re-reading this, it is an appaling agony column of complaints. I am VERY happy and VERY fortunate to be in near CR with essentially no M-protein in my blood under SPEP. My aches, pains, blurry vision and baldness are a small price to pay for remission. I honestly didn't mean to whine earlier -- I was recording what I felt as I felt it. But on the whole, the entry reads much too negatively. So please understand, the M-protein (I can't even call it a spike any longer) is the most important news!!
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Just want you to know that we are thinking about you and praying for that CR. Wish you were not having all these side effects but Dr. Barlogie told Bruce no pain no gain. So with that in mind you should be on your way to kicking this beast. Hope to see you and Jill in September. Remember, we owe you. Take care and tell Jill hello.
ReplyDeleteBruce & Jan
Great news!
ReplyDeleteYes I agree, all the side effects are a small price to pay for such good news!
ReplyDeleteNever apologize, Nick, for what you give us from your experience... it has immense value. And, it sounds like from your Editor's note you are turning a corner in your healing... I intend it!!
ReplyDeleteWe are thrilled for you! You are not a whiner, you are one of the most courageous men I've ever known and I draw strength from you. Much love and we hope to see you soon. Love, Julie & Mike
ReplyDeleteThe virtually-zero M-spike was what I really got out of this entry, rather than "complaints." Here, this is whining: Classic WordStar shortcuts as well as arrow keys, Home and End don't work in LiveJournal. Whinewhinewhine, boo-friggin'-hoo. :)
ReplyDelete.
You're dealing with cancer, it's a pain in the ass among many other body parts, and while I'm thrilled with how well your treatment has gone it wouldn't have gone nearly this well without your decididly non-whiny outlook and approach.
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Don't hesitate to mention any complaints here; they hardly register as such, and I doubt most of us reading your blog who haven't gone through anything like this would do as well as you have. Cancer really did pick the wrong guy to @#%! with.
Hey Nick, Great News!! Thanks for the update. Is golf considered rehab?
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