First, the update. Pain from hip a little better today with some help from Tylenol. Labs indicate my blood is ALMOST back to normal. My red blood cells are very low, which helps explain my exhaustion (I'm anemic) and I'm not sure why they are taking so long to catch up but whites are now squarely in the normal range, platelets are normal, kidney function is normal, liver function likewise, and CRP is down to 12 (from a high of 260) with normal being under 10 so that's very close.
Today was a brutally early day with a 6:30AM PET Scan and the noon MRI. Lying on those boards hurt my hip quite a bit but it had to be done. I managed to have a full dinner courtesy of Jill's lovely cooking -- her chicken-stir-fry-over-rice even penetrated this nasty awful metallic film that seems to be applied, courtesy of my poor mangled taste buds (some of the cells that often give up the ghost to chemo), to all food. Dinner was nice.
Importantly, I did some online sleuthing and I would not at all be surprised to find that the Fat Man / Little Boy antibiotic they put me on -- Tigecycline -- is behind my intestinal distress since that's a very common side effect. I'm going to ask them to discontinue it -- I've had 7 of the 10 days worth of it.
Now...I want to thank all of you for reading, and for your comments and for your emails. You honestly don't understand how something as simple as a comment on this blog restores my strength and sense of purpose. I'm touched by all of you so very much, and Jill and I thank you.
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.
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.
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