Friday, March 27, 2009

Catch up time!

Sorry folks, but this week has flown by. It's also hard to convey the exhaustion that sets in -- whether this is due to the chemo, or 18 days in the hospital on fairly high-dose Dilaudid is hard to discern but the notion of entering a blog update seemingly involves as much effort as active participation in an Amish barn-raising.

On Monday we met with BB, who made some interesting (as always) observations about the course of my treatment, which was right on target as far as he's concerned. He said I have a "strange disease" insofar as it makes a lot of protein but is otherwise fairly benign. Given that I had back surgery for four mangled vertebrae, I'm not sure I'd call it benign -- but then I didn't have kidney failure so perhaps I should count my blessings. He said that there was a half-life of IgG and other factors that confuse the numbers, but that I should consider things to have been around 10,000 at their worst and now around 6,000. BB felt this was good. He also said that the rising CRP (C-reactive protein, a measure of infection) was due to hematopoesis (growth of red blood cells) rather than actual infection. He further pointed out that the rising light-chains in my blood (another measure of the disease) are caused by something in the treatment and are transitory. So basically he laid to rest any concerns we had about my labs. Everybody is pleased that I harvested so many stem cells, and BB targeted the next phase of the protocol, "Transplant 1", to begin this Saturday -- which was promptly delayed when we scheduled all the tests he wanted. I now meet with him next Wednesday, and I presume treatment will begin on Thursday.

On Tuesday, we spent 9 hours at the hospital undergoing tests. A CT in the morning, an EKG, an endless MRI, and bloodwork in the infusiong center. It was exhausting and my stoic approach to this whole ordeal started to cave -- I feel terrible and I'm sick of it. My back hurts, my stomach is upset, this F$^!#@$!@ cough keeps anything from healing, and I'm utterly exhausted. I want to be better again, dammit. I'm sick of tests, I feel like a prisoner in an internment camp, etc. I have unsettling dreams Sunday and Monday night that impact my psyche. I start to think maybe there's something to the anti-depressant qualities of Cymbalta, the drug that I took for two days for neuropathy, that could make it worthwhile. I decide to wait.

Wednesday is a better day, with only the infusion center to worry about. Still, I'm exhausted. My life has been reduced to fitful attempts at sleep, followed by days of sitting on the couch waiting for night to fall. It's awful and I understand now why someone in their 70s might look at BB's program as madness. But at 40, it remains the right choice for me. This is a poor palliative, though, as I observe that my taste buds are now shot. Steak has no flavor. Nothing appeals. The pounds continue to drop -- not all from the right places mind you -- and I can't think of anything I want to eat.

Thursday we were due to begin with yet another MRI at 7AM. Neither Jill nor I slept even five minutes. Jill, sweetheart that she is, suggested we just reschedule it -- after all we have until next Wed with BB -- and deal with the consequences later. This allows us to sleep in until 9:30, after which we report to the clinic for a pre-bone marrow consult to once again explain why I shouldn't require sedation. I sign the forms. We then proceed to outpatient surgery, where they do the deed. I'm blissfully unaware of anything...until about an hour after the procedure with the painkillers wear off. My hip is KILLING ME. Previous marrow biopsies haven't hurt nearly this much. Tylenol helps a bit -- and also aids my back. If I could just lose this damn cough and get a couple of good nights' sleep, I have to imagine things would improve.

I'm also doing several balancing acts -- I will never again allow myself to be constipated, but the converse is now happening and let me tell you, 10 trips per night to the bathroom is no picnic either. I have to imagine the meds I took to ensure regularity (and which I ceased about three days ago) are getting out of my system but it's getting very old, and of course it's yet another thing that contributes to my inability to sleep.

Meanwhile, I don't know if it's my thyroid or the cooling system in the apartment or the horrible synthetic comforter that came with our condo's master bed but I pass rapidly between the chills and heat sweats -- there's virtually no equilbrium. I worry that the sweating will affect the dressing on my ever-so-important Cook catheter that hangs dutifully from the right side of my neck, or that God forbid the moisture renders the catheter vulnerable to infection (so stern was the warning to "NOT GET THIS WET!").

I manage to take a shower every few days by dutifully wrapping the catheter first in press-n-seal wrap, and then layering a washcloth or towel over it and replacing said washcloth upon the first sign of moisture. This is a chore. Everything is a chore. And the fact that my back hurts makes all this activity more difficult that it otherwise would be.

Today began with a 6:30 PET scan that we made, and continues with another MRI about an hour from now (the replacement from the early morning one we missed). Then to the infusion center, and then perhaps rest. It's so hard to see the end of the tunnel...but I remind myself I'm one day closer to it.

I'll try to do a better job of posting more frequently! Be well, all of you.


  1. Nick, you are a super-human.
    So strong to be going through all of this.
    Can't wait until you're back home!!

  2. Warm thoughts to you and Jill. It's good to hear how you guys are doing... I'm just sorry things are so tough.

  3. It's always good to see a new post from you. I always breathe a sigh of relief, although I'm sorry about your seemingly endless pain and discomfort. I hope that will subside soon. You are one tough mofo. Glad to know that BB sees your progress as good, though. Hang in there, buddy. We're pulling for you.

  4. Nick, though I do not know you please know that you are cared for and admired. I've been following your blog, as I do most things MM, as a result of my mother's diagnosis in 2006. This is, indeed, a very tough road, and I am so terribly sorry for what you and your young family are going through. Hang in there with everything that you've got and try not to let this beast become who you are!

  5. Darn right this will all be worth it!!! I promise your taste buds will come back, and so will the lost weight. I am so sorry about all the pain and discomfort you are having! I hope the weekend brings you some respite from it all and some SLEEP! Good, sound sleep seems to make all things much more tolerable. I remember that when we were in the middle of all this, it seemed it would never end, but it does and you can do it! We are thinking of you each day.

  6. Never apologize for Not Posting... those of us who are dealing with MM through friends or relatives know that some days are too full of other stuff to 'report in.' We will still be here. We are still praying and sending rays of Reiki to you whether we read something or not. Just know that your cheering squad keeps on throwing the pom-poms around and yelling "Go, Nick, Go!" out here in the blog-space.

  7. I don't know how you have the strength to cope with all of this, other than I've always known you have unbreakable resolve. Hang in there and this will all be a nightmare that one day you will joke about in the past tense.