Hi folks. Sorry to have vanished there for a bit. Lack of news plus a brief break for an annual golf vacation took me away from my post for a bit!
I continue to be contacted by newly diagnosed patients who stumble across this blog and I have to say it is one of the most rewarding things -- if you are reading this and are diagnosed and want to talk about anything, please drop me a line!
So...recent labs are all good. That's what we call "answer first" in my business. :) Now I can back up and say that I've noticed, when lying down on it, my lower right rib feels tender. There is no constant pain -- it goes away unless I am applying pressure to it by lying down on that side. I had Dr. GD take a look (which consisted of him pressing on my lower rib) and it didn't hurt. He was fine with it. Then again, he'd be fine if I had M-protein again. He doesn't fully get it. I resolved myself that I'd be getting MRI's in a few weeks anyway, as I return to Arkansas on September 7th.
Then the other day I noticed a pain in my right shoulder -- barely there...just kind of background noise during a round of golf. It went away later that day and has not returned.
Jill is keeping a brave face, suggesting that this bone pain is part of the healing process and comparing it to when our kids had "growing pains." A quick review of "growing pains" itself (thank you wikipedia) indicates that they are a misnomer and have nothing to do with bone growth (or any other kind of growth). So...there goes that theory.
Lastly, after a series of very good labs, I had a borderline high LDH (an enzyme test that indicates tissue breakdown and is a tertiary marker for cancer, treatment impact, etc.). I'm not overly concerned in isolation as it wasn't incredibly high (normal is 100-250 and it was 258...but two weeks before it was 140). Anyhow, these things were all combining to make me a little nervous.
For my part, as I said, I'll be getting an MRI soon enough for the bones. But the all-important immunofixation test, which I got back yesterday, is negative. Complete remission remains. Light chains totally normal as well. The likelihood of there being no M-protein and there being a problem is pretty low, and I'll be getting a bone marrow as well (great) in a couple of weeks as well.
I'm sure I'm still in complete remission and these random little things are just random little things. But I will be glad when the MRI reveals the lesions have all healed. I don't think I am there yet. BB says 1-2 years for resolution on MRI; I am at remission plus about 50 weeks so I've probably got six months to go.
I am half-afraid to mention any of this because knowing BB he will want fine needle aspirations of my rib and shoulder. If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT. :)
Speaking of pain, I had my first leg cramp in several weeks tonight. Left calf, pretty nasty. It struck at 4:30AM and I was afraid to lie back down for fear that it would happen again, so up I am. I saw a note in my file yesterday (yes, I had to ask twice to see it since GD's office never calls to tell me anything and I wanted to see the immunofixation results) that I had "no complains other than mild myalgia." Turns out myalgia is muscle pain, for those not in the medical profession. And if what I just experienced is mild, then a cerebral hemorrhage is a mild headache...
Lastly, gastrointestinal issues remain. I think the combined assault of VRD has left my GI tract in a state of disrray. I don't want to take anything over the counter for fear of crippling constipation. It's like a shower where the only two settings are too cold and too hot...one is afraid to make any adjustment. Anyhow, soon I will get a two week break from the meds and that will hopefully ease some of this.
That's all the news that is fit to print, and probably a few sentences more. :)
Be well, everybody.
Wednesday, August 18, 2010
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