First of all, no sooner do I compliment the biochemist behind Ambien than his child-drug lets me down. Night before last I got three hours, last night six but only after waking up for 15 minutes drenched in sweat. By the way, the red blood count is behind the wild swings in temperature (mostly freezing).
Not much to report, other than appetite is good, and I've been dutifully going to the infusion center every day to have more life-essence sucked out of me and be poked and prodded. Lately they've been taking stuff out of the arm AND the central line. ENOUGH ALREADY.
To pass the time, Jill and I went up to the seventh floor of the hospital where the high-dose chemo is given. If the infusion center is full of life (and it's not), the seventh floor was like walking into a morgue. The patients on the first floor, even if they are neutropenic and wearing a mask, have some trace of life among them. There is a TV on. People chat about their treatment. In the actual infusion room, the nurses laugh and chat with the patients and there is something approaching energy.
The seventh floor is old, dirty, depressing and filled with people that look like they are praying for death. Cadaverous, vacant eyes, people unable to lift themselves from their reclined chairs (each in their own room at least). Sorry to go HP Lovecraft of you folks but really, it's grim. It's a hospital. There's nothing "outpatient"-feeling about it. We ask how long the daily visits are. The nurses say anywhere from two to eight hours, depending on what needs to be done.
This is my near future. We see BB tomorrow and I expect he'll want me to begin four days of high-dose chemo, followed by the transplant, followed by god knows what to try to get my counts back to normal, all in the tomb on the seventh floor.
The only thing is...my back is killing me and I don't know if it's lingering affects of the surgery, now two weeks old, or if there is actually new damage. If the latter, I don't want to undergo anything that's going to make me neutropenic until after they've fixed me.
God I hope I'm ready for this. Your humble narrator signing off, me brothers.
Tuesday, March 31, 2009
Sunday, March 29, 2009
A special thanks...
...to the biochemist that invented Ambien. I FINALLY got six hours of uninterrupted sleep last night, thanks to that little miracle pill. They also proscribed something to replace the "good" bacteria in my digestive system that may have been wiped out from the Tigecil. Meanwhile, relieved to report that intestinal distress is much less severe. My only complaints now are exhaustion, the damn cough (which is much improved) and lingering back pain. Plus I have at least three days before the doctor is likely to put any new poison in me so hopefully I'll get on the mend.
In other news, for those interested (including those in my band that might be reading this) I got the very first rough mix of a song from the new record from our producer. It needs a little tweaking but it sounds great. That lifted my spirits, too.
Tomorrow is another easy day...just an echocardiogram followed by labwork. I should strive to enjoy these days....they are the "good ones" I suppose, although I'm so damn tired it's hard to really throw myself into it. Jill and I did manage to go out to eat at a Cajun place called the Faded Rose and it was quite good -- plus they played great classic rock in the background including a beautiful and rarely heard song called In Thee by Blue Oyster Cult of all people...but it's almost all acoustic. I've never heard it played on any radio / satellite / whatever anywhere.
Anyhow...that's all that's fit to print from Little Rock. More to come as events develop!
In other news, for those interested (including those in my band that might be reading this) I got the very first rough mix of a song from the new record from our producer. It needs a little tweaking but it sounds great. That lifted my spirits, too.
Tomorrow is another easy day...just an echocardiogram followed by labwork. I should strive to enjoy these days....they are the "good ones" I suppose, although I'm so damn tired it's hard to really throw myself into it. Jill and I did manage to go out to eat at a Cajun place called the Faded Rose and it was quite good -- plus they played great classic rock in the background including a beautiful and rarely heard song called In Thee by Blue Oyster Cult of all people...but it's almost all acoustic. I've never heard it played on any radio / satellite / whatever anywhere.
Anyhow...that's all that's fit to print from Little Rock. More to come as events develop!
Friday, March 27, 2009
You people are the best...
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.
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.
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.
Sunday, March 22, 2009
As soon as I brag...
...about the igG going down, yesterday's markers were 6500. Oh well. Not supposed to look day-by-day.
The good: still out of the hospital, slept well last night.
The bad: IgG and CRP both up. CRP over 100 now. Still can't shake this infection.
The ugly: Nausea and vomiting continues.
I got out of the apartment long enough to walk to lunch three blocks away...now I'm exhausted. Going to rest.
The good: still out of the hospital, slept well last night.
The bad: IgG and CRP both up. CRP over 100 now. Still can't shake this infection.
The ugly: Nausea and vomiting continues.
I got out of the apartment long enough to walk to lunch three blocks away...now I'm exhausted. Going to rest.
Saturday, March 21, 2009
Free at las....blaaaaargh.....
So I did get released yesterday. I think I was not quite ready for primetime but I've been taking it easier and I'm surviving.
I got out of the hospital around 5:45PM yesterday, and went to Walgreens to pick up the oral Dilaudid that I would need for "breakthrough" pain in the event my Fentynyl patches failed me. While at Walgreens, I started getting a horrible nauseous feeling. I popped an Ativan and asked Gordon to wait in the parking lot while my stomach settled. After 10 minues of focusing, we got in the car and made it back to the apartment. 10 minutes later I was projectile vomiting, into dry heaves. The only stuff that came up was phlegm so I'm not sure if there is some kind of drip going on from the remnants of the lung infection or what, but whatever it was, I didn't feel good. At all.
I tried Ragulin once I was cleaned out, and it seemed to help. That and holding perfectly still, watching some of the 2nd round of the NCAA tournament. Then I crashed at around midnight.
I slept very well -- the only time I havent been interrupted every 3 hours by a nurse wanting vials in almost three weeks. I got up at 3AM and coughed up a bit, but had no problem going right back to sleep and I slept until 9AM, which was great. I woke up feeling pretty rested and so I tried to have a little breakfast bar, with some diet coke (no regular water is allowed because of the low sodium situation I've got). Unfortunately, this didn't work. 20 minutes later I was throwing up again, violently cleaning out any of the morning pills I took -- including the Ativan that I had taken for nausea.
I waited 20 minutes for my stomach to settle and I took a Ragulin since this seems to work AFTER a bout of nausea to hold things together. We are running low on pills, though...I've got plenty of Ativan, which doesn't work that well for me.
I went to the infusion center -- by the way, terrible idea to drive around in a BMW M6 if you have a bad back. There seems to be a huge metal pole sticking out of the seat RIGHT into where my back hurts. Every bump is agony.
At the infusion center, I told the nurse about the nausea and they gave me some intravenous Phenergan (sp) which is yet another type of anti-nausea. They also wrote a prescription for suppositories -- not delightful, but if you think about it, when you can't keep anything down, how do you keep down the meds? I noted to the nurse that I hadn't had a bowel movement in two days, but also noted that I hadn't really eaten anything since I was discharged and said that I was on stool softeners, etc. We agreed to monitor it closely. I'm not going to have anything extreme...yet.
We went to Walgreen's again to pick up the suppositories and also bought some of those sweet Eda's strawberry bars that I've become addicated to. We also bought some potato chips to keep the salt up (not kidding). It's interesting on the salt...I went back to the oldest labs I had that measured Na in my blood and it's from mid-February and the Na is 131 (135-145 is normal). Could it be that we are worrying too much about low Na? Maybe this is my baseline? Do doctors really want a HIGHER salt diet for people?
We came home, watched the Bruins get annihilated by Villanova, had a strawberry bar and some chips and then slept. For about five hours. After which Gordon woke me up to check up on me...I got up, and decided I was hungry enough to eat some more. We phoned in a steak order from Sonny Williams' steakhouse and I had a respectable dinner (steak, potatoes, another strawberry bar, half a glass of wine, and a lot of Gatorade which I also decided today would be good for replenishing salt and potassium, etc.).
Since then, we've been vegging, watching TV. I actually feel pretty good -- my energy level is low, and my back is stiff and sore where they operated, but I feel reasonably good. I'm not coughing nearly as much...although I need to right now and probably will do so immediately after signing off on this blog. There's still a bit of a rattle in my lungs But I do feel like I am getting healthier.
I see BB on Monday AM and I'm sure he will order a fresh PET scan and bone marrow biopsy for sometime next week. As written here before, I'm going to insist on conscious sedation for the bone marrow, and they can complain all they want but I'm not budging. If I had to guess, I'll have those procedures done on Wed and Thursday, and start the 5-day course of high-dose Melphalan on Thursday afternoon. We'll see what BB has to say.
I will also note that the IgG marker, which I hadn't seen in my labs, was included in some medical notes that accompanied my discharge from the hospital. I'm not going to read too much into it because of the half-life of both the chemical agents and the cancer itself, but as a rend, it is quite positive:
2/18/09 11200
2/28/09 8110
3/5/09 4550
3/9/09 6320
3/12/09 6420
3/16/09 4490
Bear in mind, again, that all seven focal lesions were gone on the PET scan ordered on 3/5, which is a great sign. I am hopeful the next PET Scan posts similar results and that the next Bone Marrow reflects lower activity...although I hasten to remind myself and you, dear readers, that my Bone Marrow activity was at 70% at diagnosis and remained at 70% on 2/18...so it holds pretty steady.
I'm in danger of rambling now...we are putting a pizza in the oven so I'm going to go in an effort to eat a bit more.
Thanks again for your support!
I got out of the hospital around 5:45PM yesterday, and went to Walgreens to pick up the oral Dilaudid that I would need for "breakthrough" pain in the event my Fentynyl patches failed me. While at Walgreens, I started getting a horrible nauseous feeling. I popped an Ativan and asked Gordon to wait in the parking lot while my stomach settled. After 10 minues of focusing, we got in the car and made it back to the apartment. 10 minutes later I was projectile vomiting, into dry heaves. The only stuff that came up was phlegm so I'm not sure if there is some kind of drip going on from the remnants of the lung infection or what, but whatever it was, I didn't feel good. At all.
I tried Ragulin once I was cleaned out, and it seemed to help. That and holding perfectly still, watching some of the 2nd round of the NCAA tournament. Then I crashed at around midnight.
I slept very well -- the only time I havent been interrupted every 3 hours by a nurse wanting vials in almost three weeks. I got up at 3AM and coughed up a bit, but had no problem going right back to sleep and I slept until 9AM, which was great. I woke up feeling pretty rested and so I tried to have a little breakfast bar, with some diet coke (no regular water is allowed because of the low sodium situation I've got). Unfortunately, this didn't work. 20 minutes later I was throwing up again, violently cleaning out any of the morning pills I took -- including the Ativan that I had taken for nausea.
I waited 20 minutes for my stomach to settle and I took a Ragulin since this seems to work AFTER a bout of nausea to hold things together. We are running low on pills, though...I've got plenty of Ativan, which doesn't work that well for me.
I went to the infusion center -- by the way, terrible idea to drive around in a BMW M6 if you have a bad back. There seems to be a huge metal pole sticking out of the seat RIGHT into where my back hurts. Every bump is agony.
At the infusion center, I told the nurse about the nausea and they gave me some intravenous Phenergan (sp) which is yet another type of anti-nausea. They also wrote a prescription for suppositories -- not delightful, but if you think about it, when you can't keep anything down, how do you keep down the meds? I noted to the nurse that I hadn't had a bowel movement in two days, but also noted that I hadn't really eaten anything since I was discharged and said that I was on stool softeners, etc. We agreed to monitor it closely. I'm not going to have anything extreme...yet.
We went to Walgreen's again to pick up the suppositories and also bought some of those sweet Eda's strawberry bars that I've become addicated to. We also bought some potato chips to keep the salt up (not kidding). It's interesting on the salt...I went back to the oldest labs I had that measured Na in my blood and it's from mid-February and the Na is 131 (135-145 is normal). Could it be that we are worrying too much about low Na? Maybe this is my baseline? Do doctors really want a HIGHER salt diet for people?
We came home, watched the Bruins get annihilated by Villanova, had a strawberry bar and some chips and then slept. For about five hours. After which Gordon woke me up to check up on me...I got up, and decided I was hungry enough to eat some more. We phoned in a steak order from Sonny Williams' steakhouse and I had a respectable dinner (steak, potatoes, another strawberry bar, half a glass of wine, and a lot of Gatorade which I also decided today would be good for replenishing salt and potassium, etc.).
Since then, we've been vegging, watching TV. I actually feel pretty good -- my energy level is low, and my back is stiff and sore where they operated, but I feel reasonably good. I'm not coughing nearly as much...although I need to right now and probably will do so immediately after signing off on this blog. There's still a bit of a rattle in my lungs But I do feel like I am getting healthier.
I see BB on Monday AM and I'm sure he will order a fresh PET scan and bone marrow biopsy for sometime next week. As written here before, I'm going to insist on conscious sedation for the bone marrow, and they can complain all they want but I'm not budging. If I had to guess, I'll have those procedures done on Wed and Thursday, and start the 5-day course of high-dose Melphalan on Thursday afternoon. We'll see what BB has to say.
I will also note that the IgG marker, which I hadn't seen in my labs, was included in some medical notes that accompanied my discharge from the hospital. I'm not going to read too much into it because of the half-life of both the chemical agents and the cancer itself, but as a rend, it is quite positive:
2/18/09 11200
2/28/09 8110
3/5/09 4550
3/9/09 6320
3/12/09 6420
3/16/09 4490
Bear in mind, again, that all seven focal lesions were gone on the PET scan ordered on 3/5, which is a great sign. I am hopeful the next PET Scan posts similar results and that the next Bone Marrow reflects lower activity...although I hasten to remind myself and you, dear readers, that my Bone Marrow activity was at 70% at diagnosis and remained at 70% on 2/18...so it holds pretty steady.
I'm in danger of rambling now...we are putting a pizza in the oven so I'm going to go in an effort to eat a bit more.
Thanks again for your support!
Friday, March 20, 2009
On the verge of release...
Mornin' folks.
A lot (mostly good) has happened in the last 24 hours:
* I continue to feel better following back surgery and while the back is still quite tender where they did the work, other than some stiffness and soreness there I'm feeling pretty good.
* I am off Dilaudid and am relying instead on a fairly minor continuous dose of Fentanyl delivered via patches on my shoulder. I will have oral Dilaudid in case of breakthrough pain but basically I'm off the IV. This means I can type a lot better, too. :) It's amazing how thick a fog that stuff puts one in. I still can't think lucidly enough to construct that previous sentence without ending it in a preposition, but things are improving.
* My blood numbers are stabilizing. I got another pint of blood yesterday, my platelets continue to go up, my electrolytes are reaching normal ranges, my white cell count is still on the high side at 22 and change but coming down. Everything is as expected there.
* I checked out the bloodflow in my legs via doppler/ultrasound to make sure the pain I felt in my left leg was coincidental with back surgery rather than bloodclot-related. Everything looks good.
* Turd the Merciless tried to mount another attack but we kept in front of the constipation with Lactulose so all systems are working.
Hopefully, I will be released from the hospital today. BB came by yesterday and seemed to think I could be released immediately but he then acknowledged I had to get off the IV medication, which I've now done. He seemed very interested in rapidly doing another bone marrow and PET scan to "re-stage me" and then proceed with therapy. Personally I think I could use a couple of days off but we'll see. Jill ran into Bonnie, BB's head nurse, who of course attributed my constipation and complications on the sedation I insist on for the bone marrows. Meanwhile the anesthesiologists all tell me that they do those procedures with anesthesia all the time and that I shouldn't be "bullied" into not using them. So I'm sticking to my guns. They may want to do another bone marrow next week -- and if they do, they'll do it with me asleep, plain and simple. :)
My friend Gordon has come out to relieve Jill, who left very early this morning. We watched UCLA squeak by VCU last night in the tourney and will watch them hopefully beat Villanova on Saturday. Otherwise, not much on the docket.
More news as it develops. Thanks to all for your support!
A lot (mostly good) has happened in the last 24 hours:
* I continue to feel better following back surgery and while the back is still quite tender where they did the work, other than some stiffness and soreness there I'm feeling pretty good.
* I am off Dilaudid and am relying instead on a fairly minor continuous dose of Fentanyl delivered via patches on my shoulder. I will have oral Dilaudid in case of breakthrough pain but basically I'm off the IV. This means I can type a lot better, too. :) It's amazing how thick a fog that stuff puts one in. I still can't think lucidly enough to construct that previous sentence without ending it in a preposition, but things are improving.
* My blood numbers are stabilizing. I got another pint of blood yesterday, my platelets continue to go up, my electrolytes are reaching normal ranges, my white cell count is still on the high side at 22 and change but coming down. Everything is as expected there.
* I checked out the bloodflow in my legs via doppler/ultrasound to make sure the pain I felt in my left leg was coincidental with back surgery rather than bloodclot-related. Everything looks good.
* Turd the Merciless tried to mount another attack but we kept in front of the constipation with Lactulose so all systems are working.
Hopefully, I will be released from the hospital today. BB came by yesterday and seemed to think I could be released immediately but he then acknowledged I had to get off the IV medication, which I've now done. He seemed very interested in rapidly doing another bone marrow and PET scan to "re-stage me" and then proceed with therapy. Personally I think I could use a couple of days off but we'll see. Jill ran into Bonnie, BB's head nurse, who of course attributed my constipation and complications on the sedation I insist on for the bone marrows. Meanwhile the anesthesiologists all tell me that they do those procedures with anesthesia all the time and that I shouldn't be "bullied" into not using them. So I'm sticking to my guns. They may want to do another bone marrow next week -- and if they do, they'll do it with me asleep, plain and simple. :)
My friend Gordon has come out to relieve Jill, who left very early this morning. We watched UCLA squeak by VCU last night in the tourney and will watch them hopefully beat Villanova on Saturday. Otherwise, not much on the docket.
More news as it develops. Thanks to all for your support!
Thursday, March 19, 2009
Well.......crap. : (
So my back hurt all night long. I asked for (and was given) a copy of my labs this morning and there are a couple of numbers outta whack.
My white blood count is still at around 23.5, which is high but not unexpectedly so. The red counts are all low, again not unexpected. The real bummer is that the C-Reactive Protein (a measure of inflammation and infection) had been plummeting nicely and instead of continuing to fall, it's reversed directions on us. Normal is around 8-12; mine had been as high as 260 upon admission to hospital; was at 12 yesterday but today it's more like 30. PLUS I've got a bit of a fever.
I hope the pain in my back isn't an infection at the surgical site.
More to come as it arrives.
Best,
Nick
My white blood count is still at around 23.5, which is high but not unexpectedly so. The red counts are all low, again not unexpected. The real bummer is that the C-Reactive Protein (a measure of inflammation and infection) had been plummeting nicely and instead of continuing to fall, it's reversed directions on us. Normal is around 8-12; mine had been as high as 260 upon admission to hospital; was at 12 yesterday but today it's more like 30. PLUS I've got a bit of a fever.
I hope the pain in my back isn't an infection at the surgical site.
More to come as it arrives.
Best,
Nick
Wednesday, March 18, 2009
Fiddlesticks.....or #%&*%$@%&!!!! OUCH!!!!!!!!!
I awoke this morning after anxious dreams to learn I had been transformed into a giant cockroach.
With apologies to Kafka, I should have it so good.
I went to bed last night and barely got any rest. We are still working through the logistics of the kids and that's very, very difficult for us all, especially Jill who is such a doting mother that separation is just gut-wrenching. We got through noodling some potential solutions there at around 1AM, which I figured would be good timing since I get about four hours out of sleep out of Dilaudid and Ativan. Sure enough, I woke up around 5AM and had the usual battery of blood draws and tests done.
I had met yesterday with a doctor from anaesthesiology to get consent for the procedure. I hadn't yet met with the doctor doing the vertebroplasty but I wasn't that concerned. However, now I'm to the point of being wheeled out of my room having received my good-bye kiss from the antiobiotic IV and still I haven't spoken with the surgeon.
In the pre-op room, we learned (1) they originally had me scheduled to replace my Cook catheter with a Quinton catheter (very interesting since we were doing the OPPOSITE!) and (2) I actually have FOUR compression fractures in my vertebrae...not just the two that we'd been told about. T4 (or 5?), T10, L3 and L4. I was a little unnerved by these late developments...but I was also unnerved by the fact that the anaesthesiologist couldn't decide whether or not to put me totally under general. After arguing for so long on so many procedures for MORE sedation, it was odd to feel nervous about the amount I would be getting.
Anyhow, sooner or later everything got taken care of and two hours later I was back in my room. They changed out the catheter correctly, and did something on my back because I AM IN FREAKIN' AGONY HERE!!!!!! The good news is I am able to cough without feeling like my back is going to split in half, so I don't need to worry about pneumonia. The bad news is my back is KILLING ME. I am hopeful, and there is a good deal of precedence for this, that it will improve overnight...provided I can actually get some sleep. Before the surgery, I would find a reasonably comfortable position (say pain = 2 on a 10 scale) and hang on as long as I could before it began to deteriorate, ending in a coughing fit and pain of say, 7 or 8. Now I am a constant 5. No relief...no respite.
Jill says the swelling in my back has gone down and that's a good sign...so hopefully tomorrow will be a fresh start, a new day, and all that happy horses**t =. :)
We'll find a way. One way or another.
Thanks to all for your continued support!
Gregor the sentient cockroach, signing off.
With apologies to Kafka, I should have it so good.
I went to bed last night and barely got any rest. We are still working through the logistics of the kids and that's very, very difficult for us all, especially Jill who is such a doting mother that separation is just gut-wrenching. We got through noodling some potential solutions there at around 1AM, which I figured would be good timing since I get about four hours out of sleep out of Dilaudid and Ativan. Sure enough, I woke up around 5AM and had the usual battery of blood draws and tests done.
I had met yesterday with a doctor from anaesthesiology to get consent for the procedure. I hadn't yet met with the doctor doing the vertebroplasty but I wasn't that concerned. However, now I'm to the point of being wheeled out of my room having received my good-bye kiss from the antiobiotic IV and still I haven't spoken with the surgeon.
In the pre-op room, we learned (1) they originally had me scheduled to replace my Cook catheter with a Quinton catheter (very interesting since we were doing the OPPOSITE!) and (2) I actually have FOUR compression fractures in my vertebrae...not just the two that we'd been told about. T4 (or 5?), T10, L3 and L4. I was a little unnerved by these late developments...but I was also unnerved by the fact that the anaesthesiologist couldn't decide whether or not to put me totally under general. After arguing for so long on so many procedures for MORE sedation, it was odd to feel nervous about the amount I would be getting.
Anyhow, sooner or later everything got taken care of and two hours later I was back in my room. They changed out the catheter correctly, and did something on my back because I AM IN FREAKIN' AGONY HERE!!!!!! The good news is I am able to cough without feeling like my back is going to split in half, so I don't need to worry about pneumonia. The bad news is my back is KILLING ME. I am hopeful, and there is a good deal of precedence for this, that it will improve overnight...provided I can actually get some sleep. Before the surgery, I would find a reasonably comfortable position (say pain = 2 on a 10 scale) and hang on as long as I could before it began to deteriorate, ending in a coughing fit and pain of say, 7 or 8. Now I am a constant 5. No relief...no respite.
Jill says the swelling in my back has gone down and that's a good sign...so hopefully tomorrow will be a fresh start, a new day, and all that happy horses**t =. :)
We'll find a way. One way or another.
Thanks to all for your continued support!
Gregor the sentient cockroach, signing off.
Tuesday, March 17, 2009
A quick aside...
...the evening shift nurse these past few nights is a very nice guy. Extremely knowledgeable. Kind to a fault. Likes to chat.
The kind of nurse that you hear about with a trail of death behind him and a big tupperware drum full of biceps in his attic.
Just sayin'.
The kind of nurse that you hear about with a trail of death behind him and a big tupperware drum full of biceps in his attic.
Just sayin'.
Bad to the bone...
Some good, and some mostly crummy details on the eve of my back surgery.
First, the final count on stem cell collection was 28 mil stem cells. Assuming I don't change the surface area of my body too much (i.e. by getting fat) this should provide me with enough cells or 7 to 8 transplants should that be necessary. The current protocol envisions two. The remaining cells will be kept indefinitely and could be used for long term autologous transplants down the road, or for entirely different uses, some of which may not be disease related at all.
I'm a little concerned about my ability to type -- it's taken a real blow these last couple of weeks and I am hoping it's just one part being out of practice and one part sitting in the wrong position or it could have a real impact on my typing speed and potentially other elements of manual dexterity upon which I rely (i.e. guitar, piano, etc.)
The doctor delivered some sobering news about my back today -- we all still expect a high likelihood of a full recovery, but she cautioned that it might not be 100% fixed after one procedure, and perhaps worse that the back is still going to be weak for the next couple of years. I'll need to go on something like Zometa, which is a bone strengthener typically given to little old ladies for ostheoperosis. This will help strengthen the bone but has a lot of complications -- I can't have any oral surgery, for example -- which is a non-trivial concern given that there may be a root canal in the next few years on my left side. Oh well...this is the new reality.
The other depressing aspect of the new reality is that I won' be able to play with my kids as actively as I had hoped -- indeed as actively as I had told Parker. A lot of the simple but strenuous stuff we used to do together will be off limits for at least a couple of years.
Coughing is still a nightmare -- there are still sheets of phlegm in there that need to come out but which are stubborn and without the strength in my back to sustain a concerted effort to get rid of it all, it's lingering. Nonetheless, an important infection marker in my blood is coming down so that's a good sign where the lung infection is concerned. I am back on an antiviral medication that will hopefully help me get rid of it the rest of the way.
I did't have the presence of mind to ask about golf or tennis but I hope both these activities are greenlit -- running was not approved, for example.
: (
First, the final count on stem cell collection was 28 mil stem cells. Assuming I don't change the surface area of my body too much (i.e. by getting fat) this should provide me with enough cells or 7 to 8 transplants should that be necessary. The current protocol envisions two. The remaining cells will be kept indefinitely and could be used for long term autologous transplants down the road, or for entirely different uses, some of which may not be disease related at all.
I'm a little concerned about my ability to type -- it's taken a real blow these last couple of weeks and I am hoping it's just one part being out of practice and one part sitting in the wrong position or it could have a real impact on my typing speed and potentially other elements of manual dexterity upon which I rely (i.e. guitar, piano, etc.)
The doctor delivered some sobering news about my back today -- we all still expect a high likelihood of a full recovery, but she cautioned that it might not be 100% fixed after one procedure, and perhaps worse that the back is still going to be weak for the next couple of years. I'll need to go on something like Zometa, which is a bone strengthener typically given to little old ladies for ostheoperosis. This will help strengthen the bone but has a lot of complications -- I can't have any oral surgery, for example -- which is a non-trivial concern given that there may be a root canal in the next few years on my left side. Oh well...this is the new reality.
The other depressing aspect of the new reality is that I won' be able to play with my kids as actively as I had hoped -- indeed as actively as I had told Parker. A lot of the simple but strenuous stuff we used to do together will be off limits for at least a couple of years.
Coughing is still a nightmare -- there are still sheets of phlegm in there that need to come out but which are stubborn and without the strength in my back to sustain a concerted effort to get rid of it all, it's lingering. Nonetheless, an important infection marker in my blood is coming down so that's a good sign where the lung infection is concerned. I am back on an antiviral medication that will hopefully help me get rid of it the rest of the way.
I did't have the presence of mind to ask about golf or tennis but I hope both these activities are greenlit -- running was not approved, for example.
: (
Monday, March 16, 2009
STILL WAITING...
Where the hell IS Godot anyway? I am having a hell of a time concentrating on typing (literally three out of four keystrokes are wrong because of the influence of the Dilaudid) and the door seems to open every six minutes between housekeeping, food orders, food deliver, food pickup, food review, nurses, clinicians, doctors making rounds, plus blood being drawn, cultures being run, lab results being delivered, vital signs being checked, linens being changed, etc.
Ugh. Anyhow, the latest news is that my vertebroplasty has been scheduled for Wednesday sometime. There's simply no way to do it before then. On the plus side, I'll have extremely skilled doctors performing the procedure and I will be able to do both the vertebroplasty and central venus catheter replacement at the same time under conscious sedation. The doctor performing the vertebroplasty has done more of these than any other doctor in the world.
Meanwhile my beard keeps coming out in groups of a dozen little hairs at a time. Soon, in the words of Montgomery Burns, I'll be as "bald as a plucked chicken."
Thanks to all for your continued support and interest. I'll keep you posted on things as they develop.
Ugh. Anyhow, the latest news is that my vertebroplasty has been scheduled for Wednesday sometime. There's simply no way to do it before then. On the plus side, I'll have extremely skilled doctors performing the procedure and I will be able to do both the vertebroplasty and central venus catheter replacement at the same time under conscious sedation. The doctor performing the vertebroplasty has done more of these than any other doctor in the world.
Meanwhile my beard keeps coming out in groups of a dozen little hairs at a time. Soon, in the words of Montgomery Burns, I'll be as "bald as a plucked chicken."
Thanks to all for your continued support and interest. I'll keep you posted on things as they develop.
Sunday, March 15, 2009
Waiting for Godot...
Now I'm just waiting for the vertebraeplasty, which can hopefully be performed tomorrow, after which I'll be discharged. It's hard to tie anybody down because it's the weekend, and there's still no certainty, but hopefully tomorrow I'll get in, get conscious sedation and get both my back fixed and my line switched back out from the big ol' honkin' Quinton catheter to the smaller Cook catheter.
My beard, which had been staying the same length for the past two weeks, is now falling out. To be expected, of course, but for some reason there's an odd sense of finality to it. When I wipe my hand across my cheek, a poof of little hairs comes out. Well, as I said, I've been expecting it so no biggie.
That's probably all the news that's fit to print until I'm either (a) discharged from the hospital, or (b) other complications prevent the former from happening. So hopefully I'll be writing to you from my apartment in the next couple of days.
Thanks again for your interest and support!!
My beard, which had been staying the same length for the past two weeks, is now falling out. To be expected, of course, but for some reason there's an odd sense of finality to it. When I wipe my hand across my cheek, a poof of little hairs comes out. Well, as I said, I've been expecting it so no biggie.
That's probably all the news that's fit to print until I'm either (a) discharged from the hospital, or (b) other complications prevent the former from happening. So hopefully I'll be writing to you from my apartment in the next couple of days.
Thanks again for your interest and support!!
Saturday, March 14, 2009
Harvester of Sorrow...
I awoke this morning to the dulcet tones of two orderlies telling me they'd be coming back to bring me to apheresis shortly. I had two small bowls of raisin bran to make sure all systems were good to go, and I had them hit me with some Ativan (anti-nausea so as to accommodate a whole lotta painkiller) and Dilaudid (said painkiller). By the way, I have lost between 20-25 pounds and hope to keep it off. If I can tighten the belly just a little bit I'll look pretty darn good, I think. Though my expectation levels have been reset on my hair based on responses to that picture -- although my darling wife says I look like the doctor guy from Lost, some other messages indicate these sweetly-deranged comments could be a side-effect of marriage. :) I guess I'm a guy who needs his hair. Which is fine -- I bargained time for it to return in my overall calendar, and in the meantime, it will make shaving easier.
Apheresis is a completely painless, if dull, process through which the cells are removed via the Quinton Catheter now in my neck, separated in a centrifuge and returned to the bloodstream minus the immature "stem cells" (those which are capable of forming any type of blood cell). These are set aside for a part of the procedure down the road.
Dr. ML at Cedars' Sinai -- he of the gloomy outlook -- had suggested one of the limiting factors in how long they can keep someone alive with MM is the fact that it gets more difficult to harvest cells from patients that have already donated. Generally it can take 3-4 m cells per sq meter of body surface (an odd measurement upon which I have ruminated elsewhere in this blog). Also, there is only so much room to store samples. Lastly, the use of drugs like Revlimid, which are preferable to Thalidomide for therapy, make it difficult for a body to properly secrete these stem cells.
I had a productive harvest yesterday. I was in the chair for about four hours, during which time we watched some Lost episodes. This morning, I was informed that my white counts were back up to 12.2 (huzzah!!! A robust immune system!!!) and that I yielded over 19 million stem cells yesterday!! An addition to designating me an "overachieving stem cell donor", this virtually guaranteed that I needed no more than one more day (today) in the apheresis chamber. After today's harvest, I should have between 25-30 mil stem cells which should be enough for at least 7 transplants, including the two I need during this current therapy. Plus they will store all of them for me. Not too shabby!! :)
I no longer need the shots in the stomach to stimulate the growth, so that's one less painful procedure to deal with. Now it is really just a matter of getting my back fixed -- which could be challenging as it's been hurting like crazy lately and I'm sure that two weeks of being in here, terrified of coughing and gasping desparately for air when I do, probably hasn't helped. We should find out when my vertebraeplasty is scheduled -- with luck, it will be done Monday and then I'll be out of the hospital on Tuesday.
Then we'll take some amount of bridging therapy (thalidomide, dexamethasone, or potentially velcade) and wait for my body to fully recover (appetite, strength, etc.) before the next onslaught of high-dose chemo. I'm ready.
And this time I'm taking some kind of anti-conspitation drug!!! :)
Apheresis is a completely painless, if dull, process through which the cells are removed via the Quinton Catheter now in my neck, separated in a centrifuge and returned to the bloodstream minus the immature "stem cells" (those which are capable of forming any type of blood cell). These are set aside for a part of the procedure down the road.
Dr. ML at Cedars' Sinai -- he of the gloomy outlook -- had suggested one of the limiting factors in how long they can keep someone alive with MM is the fact that it gets more difficult to harvest cells from patients that have already donated. Generally it can take 3-4 m cells per sq meter of body surface (an odd measurement upon which I have ruminated elsewhere in this blog). Also, there is only so much room to store samples. Lastly, the use of drugs like Revlimid, which are preferable to Thalidomide for therapy, make it difficult for a body to properly secrete these stem cells.
I had a productive harvest yesterday. I was in the chair for about four hours, during which time we watched some Lost episodes. This morning, I was informed that my white counts were back up to 12.2 (huzzah!!! A robust immune system!!!) and that I yielded over 19 million stem cells yesterday!! An addition to designating me an "overachieving stem cell donor", this virtually guaranteed that I needed no more than one more day (today) in the apheresis chamber. After today's harvest, I should have between 25-30 mil stem cells which should be enough for at least 7 transplants, including the two I need during this current therapy. Plus they will store all of them for me. Not too shabby!! :)
I no longer need the shots in the stomach to stimulate the growth, so that's one less painful procedure to deal with. Now it is really just a matter of getting my back fixed -- which could be challenging as it's been hurting like crazy lately and I'm sure that two weeks of being in here, terrified of coughing and gasping desparately for air when I do, probably hasn't helped. We should find out when my vertebraeplasty is scheduled -- with luck, it will be done Monday and then I'll be out of the hospital on Tuesday.
Then we'll take some amount of bridging therapy (thalidomide, dexamethasone, or potentially velcade) and wait for my body to fully recover (appetite, strength, etc.) before the next onslaught of high-dose chemo. I'm ready.
And this time I'm taking some kind of anti-conspitation drug!!! :)
Friday, March 13, 2009
What a long, strange trip it's been! (warning: lighthearted scatalogical humor in this storyline)
So sorry for the delay between responses but as you will no doubt discern, there have been reasons for the delay. I have no intention of giving birth to the Great American Novel, no desire to employ literary devices stolen from Cervantes (a story within a story? no thanks), no need for ornate medical devices tied back into the Merovingian Bloodline Conspiracy exploited in Umberto Eco or Dan Brown, etc.
No, I merely got very sick and that took me out of commission for a while.
On the weekend of February 20th or so (that Sunday to be precise) Jill had gone off to the store in a valiant effort to keep the apartment stocked with healthy alternatives. Sadly, while very well-intentioned, this all went out the window and as I write this I can jealously smell Jill's donut holes from Krispy Kreme's wafting in over the comparatively dull strawberry pure juice bar that I'm eating. Anyhow, the events of that particular date had nothing to do with either strawberries or donuts...rather, they had to do with some of varmint casserrole (my money in these parts is always on possum [sic]). The astute readers among you will note I already made this leap of logic in my post at the time.
I had found a bloc of old war movies to watch on TCM -- Bridge on the River Kwai was playing at the time, when the fire alarm went off. I leapt to my feet to pull some jeans on and that's when I noticed that painful, stiff, sickly warmth that had first washed over my back when I was golfing back around Thanksgiving. I could barely make it into my jeans, but somehow I managed to negotiate 10 flights of stairs down and out of the building with a resolve that Alec Guinness' colonel could only have been proud of -- only to learn that the source of the fire was a gruff older man's wife [ed. we'll call her Sniffy]. The gruff old man kept mumbling about how mortified Sniffy was...and as put out as we all were, I couldn't really bring myself to ask what kind of varmint was being prepared. I waited interminably for an elevator (not gonna put ten more flights on stairs on this back!) and sooner or later, found myself back in my apartment in one piece. When Jill came back later that afternoon, we resolved to report the painful back episode to the doctor the next day.
When we met with the doctor (the one who suggested Cymbalta), he was going to have a bone density scan run, plus the standard post-Velcade bone marrow scan / gene array, plus an MRI for the back pain, etc., etc. Long-story short, the bone marrow went off without a hitch, as did installation of the central Cook Catheter, a three-aperture port in my neck which sounds pretty gnarly but which was actually a GODSEND -- no more needles! Everything from draws, to cultures, to insertions of isotopes for PET Scans, inserts of magnetic contrast for MRIs, IV pushes, etc. All soup to nuts painlessly taken from that one access point. However, the MRI was never actually scheduled and fell through the cracks [cue ominous and foreboding music].
My brother Peter had come out the weekend of the 27th and 28th to give Jill a few much-needed days back with the kids, which was remarkably nice of him. The bone density scan looked okay so there was no explanation for the back pain, which was worsening. I figured it was weakening bones and I let people know about it -- in any case, I was in treatment now, thank God. I remember it was almost like me taunting the cancer at this point. Mocking it. "Bring it on," that sort of thing.
Peter and I had a blast. We ate good food (including sushi), had tasty beer, watched a lot of old movies, laughed until we cried at everything from family members to some of the aforementioned movies, and had an altogether wonderful time. By the time he left, however, at the risk of being blunt, the ol' bear hadn't visited the woods in about five days. I had been warned that the chemo, painkillers, Thalidomide and various other drugs have a tendency to "bind you up"-- but who takes those things seriously, you know? Nonetheless, I had told the nurses in conspiritorial tones in the infusion center the previous day and they had prescribed something called Magnesium Citrate -- which Peter and I discerned is essentially the same thing as solid rocket booster fuel. Directions: drink half bottle, grip toilet bowl for dear life, brace yourself.
After the first prescription (which was filled in largely the same manner that weapons-grade uranium is conveyed between laboratories) was used up, I was given another bottle as well as a smaller bottle of something called "Flowmax." Somehow, this smaller bottle with the simpler label looked far more frightening than the fancy multi-syllabic name of the first solid-rocket-fuel-meets-colon-cleanser. At any rate, after a couple of more doses, a tiny little squeak emerged from the mighty apparatus so while I wasn't sure I'd be able to stop once I got started, I was likewise certain I wasn't doomed to some forgotten sphinctreless chapter of Milton's Paradise Lost. Jill had returned from Los Angeles, and panic started to subside...
Until that evening, when I woke at 1AM buckled over in pain, unable to move, stand up, sit down, roll over, or do anything. We called the doctor. He agreed that even one little toot was progress, but that I should get in there for pain treatment if nothing else. And so shortly after 1AM, March 2nd, we checked into the emergency room at the University of Arkansas for Medical Sciences. Soon after we arrived, they admitted me to the hospital (but of course we had to wait 9 hours in the ER for a room).
My gut was KILLING ME. I felt like I was having a baby. Ladies, my hats are off to you. The pain was literally coming and going in waves. I had Jill walking me through Lamaze breathing exercises in order to make it through this colossal impending dump that was threatening to turn me into Dr. Jekyll and a nightmarish Mr. Turd, bounding around committing atrocities. I was literally focusing my breathing so the horrible turd-like Eye of Sauron inside me would turn its back on me long enough for me to return the one ring of Flowmax to the forges of Mordor.
Despite my protestations, the clinicians moved me from one stretcher to another one to take a chest x-ray. I remembered every funny urban myth "poop" story about college athletes coming back to me at once now. Somehow none of them were funny any longer.
The GOOD news is that there didn't appear to be a bowel obstruction. So now we just had to keep taking the Exploducon 6000 until it had time to work its magic, and manage the extreme pain in the meantime. We tried Morphine. Nothing. We upped the dose. I literally heard the poop laughing at us. "Pathetic earthlings," bellowed Turd the Merciless from within. "Who can save you now?" Normally, this would be funny -- you know...haha, talking poo, hahahaha. Not in this case. I was filled with the fear of the grave in a vey real sense.
We increased to a new medicine...Dilaudid. This stuff is STRONG and had worked for Jill when she had viral meningitis the previous summer. And it worked for me...but unfortunately in between doses we noticed that which the gas pain had not allowed us to focus on previously: there was something very wrong with my back.
They scheduled me for an MRI Thursday the 5th. On the 3rd and 4th I basically toughed it out on meds and watched my blood numbers change daily. All of this information seemed good. Of course I would be getting the PET Scan on the 5th as well, which I couldn't wait to see since BB's data shows a very, very high correlation between long-term successful outcome and reduction in focal lesions from the test Velcade and Melphalan.
Bear in mind, I've also got falling white counts (and platelets, red blood counts, etc) this whole time because I'm now neutropenic. This is important for two reasons: (a) I am constantly fighting off infections, and (b) I have a constant wet, hacking cough. Now -- quick question: your back is killing you and you cough uncontrollably; when you cough, do you feel (a) terrific, (b) fair, (c) in unspeakable agony??????
So I'm in the MRI answering "C!" to this in my head over and over and somehow by the grace of God and a ton of Dilaudid I get through the MRI -- which confirms that I have a partially collapsed left lung, bilateral pneumonia (explains cough) and two broken lumbar vertebrae (explains horrible pain in back).
By now, though, I am fully neutropenic. I negotiate waking sedation for the PET scan because without this, there's no way I can hold still for them to get a reading. While initially not happy about it (because it delays his protocol) BB sees the logic in this and schedules the PET with conscious sedation for the evening of the 6th. Of course any procedure done to correct my back pain is too risky since I couldn't fight off any ensuing infection and so I am left to strike a delicate balance between Dilaudid and Ativan which is used to help sleep and fight nausea (without contributing to constipation!).
Meanwhile, I am getting twice-a-day shots in the belly to stimulate blood growth factors and to mobilize the blood stem cells from the marrow into the blood stream where they can be easily harvested for use in high-dose transplants that are upcoming. The quality and pain of these shots vary by nursing staff but most of them aren't all that bad. With no platelets, the belly does bruise rather nastily, though...I look like I got shot in the belly with one of those anti-personnel crowd dispersion devices.
Speaking of the nursing staff...they are delightful, by and large, particularly on the Myeloma floor where their dedication to patient care is extremely evident. I have only very nice things to say about them.
Well, and also one funny thing.
One woman who comes from a former Soviet republic doesn't have perfect mastery of the King's English. She was just going through all of the horrible things that can happen to me from doing a procedure while neutropenic (i.e. no immune system, no ability to overcome more trivial infection, etc.). At one point she say "I am now to walk from room to get lab results for you." She leaves the room and then comes back about three minutes later, looking very serious.
Stonefaced and Stalinesque she says "There is something I mus to tell you."
"Y-yes?????" I asked, trepidatious about the labs even as they were just routine.
"We have harpist."
Great. If I need a little "pick me up / shuffle" from some nonagenarian harpist of Armenian descent that looks like a key part in one of the early Woody Allen movies to lighten my day, I'll be sure to call. Just the other day I was reminiscing abot Pappy Boyington's squadron runs over the balkans and ondering what hapened to that little Azerbaijete Susie May Glotzsomanjanian?
Sooooooooo....with all that said and done, where are we as of Friday, March 13, 8:14PM Pacific?
1. The PET scan showed complete absence of all the focal lesions identified during my trip / scan /the week of Jan 24th. This is HUGLEY good news. First, in the qualitative sense, it means all seven of the clusters of cancer cells that were observed a few weeks ago are now obliterated. Nada. Nothin. That means there will be no more pain. No rib pain. No back pain. Nothin'. QUANTITATIVELY it is an even BIGGER deal. There is a "very, very high correlation" between this finding and long-term, deep, sustained remission / curative potential of the total therapy protocol.
BB came to share his excitement about this. He was patting my head and playfully pulled out a tiny clump of hair. He told the nurse on duty to order a haircut for me so I don't look like a homeless person. :) With this in mind, I had the building's stylist come by. He was kind enough to give me the skin-job haircut -- I tipped him well and told him to use it for a child who couldn't afford it.
2. I responded very well to chemo with manageable side effects -- but for the back pain, which shouldn't be there next time 'round, and the constipation which I now know to look out for, I'd have more or less skated through.
3. I am doing very well with harvesting and should be done after my session tomorrow with enough bags of stem cells for 6+ transplants in the future (total therapy doesn't envision needing more than two, but also anticipates future harvesting to be difficult given the amount of Revlimid and other drugs being used today).
4. I should be getting my back fixed via a simple procedure called a vertebraplasty on Monday or Tuesday, after which the back should no longer be an issue. And then I can finally get out of the hospital and go back to the Little Rock condo.
5. I anticipate beginning high-dose Melphalan plus transplant (the first of two) late next week.
THANK YOU VERY MUCH for your patience. I'm sorry it has taken me so long to update this but as you can see, there's been a lot going on and I did want a little bit of the suspense and limbo to come through and to preserve the reality of the experience. You folks are wonderful friends and an amazing source of strength and inspiration.
No, I merely got very sick and that took me out of commission for a while.
On the weekend of February 20th or so (that Sunday to be precise) Jill had gone off to the store in a valiant effort to keep the apartment stocked with healthy alternatives. Sadly, while very well-intentioned, this all went out the window and as I write this I can jealously smell Jill's donut holes from Krispy Kreme's wafting in over the comparatively dull strawberry pure juice bar that I'm eating. Anyhow, the events of that particular date had nothing to do with either strawberries or donuts...rather, they had to do with some of varmint casserrole (my money in these parts is always on possum [sic]). The astute readers among you will note I already made this leap of logic in my post at the time.
I had found a bloc of old war movies to watch on TCM -- Bridge on the River Kwai was playing at the time, when the fire alarm went off. I leapt to my feet to pull some jeans on and that's when I noticed that painful, stiff, sickly warmth that had first washed over my back when I was golfing back around Thanksgiving. I could barely make it into my jeans, but somehow I managed to negotiate 10 flights of stairs down and out of the building with a resolve that Alec Guinness' colonel could only have been proud of -- only to learn that the source of the fire was a gruff older man's wife [ed. we'll call her Sniffy]. The gruff old man kept mumbling about how mortified Sniffy was...and as put out as we all were, I couldn't really bring myself to ask what kind of varmint was being prepared. I waited interminably for an elevator (not gonna put ten more flights on stairs on this back!) and sooner or later, found myself back in my apartment in one piece. When Jill came back later that afternoon, we resolved to report the painful back episode to the doctor the next day.
When we met with the doctor (the one who suggested Cymbalta), he was going to have a bone density scan run, plus the standard post-Velcade bone marrow scan / gene array, plus an MRI for the back pain, etc., etc. Long-story short, the bone marrow went off without a hitch, as did installation of the central Cook Catheter, a three-aperture port in my neck which sounds pretty gnarly but which was actually a GODSEND -- no more needles! Everything from draws, to cultures, to insertions of isotopes for PET Scans, inserts of magnetic contrast for MRIs, IV pushes, etc. All soup to nuts painlessly taken from that one access point. However, the MRI was never actually scheduled and fell through the cracks [cue ominous and foreboding music].
My brother Peter had come out the weekend of the 27th and 28th to give Jill a few much-needed days back with the kids, which was remarkably nice of him. The bone density scan looked okay so there was no explanation for the back pain, which was worsening. I figured it was weakening bones and I let people know about it -- in any case, I was in treatment now, thank God. I remember it was almost like me taunting the cancer at this point. Mocking it. "Bring it on," that sort of thing.
Peter and I had a blast. We ate good food (including sushi), had tasty beer, watched a lot of old movies, laughed until we cried at everything from family members to some of the aforementioned movies, and had an altogether wonderful time. By the time he left, however, at the risk of being blunt, the ol' bear hadn't visited the woods in about five days. I had been warned that the chemo, painkillers, Thalidomide and various other drugs have a tendency to "bind you up"-- but who takes those things seriously, you know? Nonetheless, I had told the nurses in conspiritorial tones in the infusion center the previous day and they had prescribed something called Magnesium Citrate -- which Peter and I discerned is essentially the same thing as solid rocket booster fuel. Directions: drink half bottle, grip toilet bowl for dear life, brace yourself.
After the first prescription (which was filled in largely the same manner that weapons-grade uranium is conveyed between laboratories) was used up, I was given another bottle as well as a smaller bottle of something called "Flowmax." Somehow, this smaller bottle with the simpler label looked far more frightening than the fancy multi-syllabic name of the first solid-rocket-fuel-meets-colon-cleanser. At any rate, after a couple of more doses, a tiny little squeak emerged from the mighty apparatus so while I wasn't sure I'd be able to stop once I got started, I was likewise certain I wasn't doomed to some forgotten sphinctreless chapter of Milton's Paradise Lost. Jill had returned from Los Angeles, and panic started to subside...
Until that evening, when I woke at 1AM buckled over in pain, unable to move, stand up, sit down, roll over, or do anything. We called the doctor. He agreed that even one little toot was progress, but that I should get in there for pain treatment if nothing else. And so shortly after 1AM, March 2nd, we checked into the emergency room at the University of Arkansas for Medical Sciences. Soon after we arrived, they admitted me to the hospital (but of course we had to wait 9 hours in the ER for a room).
My gut was KILLING ME. I felt like I was having a baby. Ladies, my hats are off to you. The pain was literally coming and going in waves. I had Jill walking me through Lamaze breathing exercises in order to make it through this colossal impending dump that was threatening to turn me into Dr. Jekyll and a nightmarish Mr. Turd, bounding around committing atrocities. I was literally focusing my breathing so the horrible turd-like Eye of Sauron inside me would turn its back on me long enough for me to return the one ring of Flowmax to the forges of Mordor.
Despite my protestations, the clinicians moved me from one stretcher to another one to take a chest x-ray. I remembered every funny urban myth "poop" story about college athletes coming back to me at once now. Somehow none of them were funny any longer.
The GOOD news is that there didn't appear to be a bowel obstruction. So now we just had to keep taking the Exploducon 6000 until it had time to work its magic, and manage the extreme pain in the meantime. We tried Morphine. Nothing. We upped the dose. I literally heard the poop laughing at us. "Pathetic earthlings," bellowed Turd the Merciless from within. "Who can save you now?" Normally, this would be funny -- you know...haha, talking poo, hahahaha. Not in this case. I was filled with the fear of the grave in a vey real sense.
We increased to a new medicine...Dilaudid. This stuff is STRONG and had worked for Jill when she had viral meningitis the previous summer. And it worked for me...but unfortunately in between doses we noticed that which the gas pain had not allowed us to focus on previously: there was something very wrong with my back.
They scheduled me for an MRI Thursday the 5th. On the 3rd and 4th I basically toughed it out on meds and watched my blood numbers change daily. All of this information seemed good. Of course I would be getting the PET Scan on the 5th as well, which I couldn't wait to see since BB's data shows a very, very high correlation between long-term successful outcome and reduction in focal lesions from the test Velcade and Melphalan.
Bear in mind, I've also got falling white counts (and platelets, red blood counts, etc) this whole time because I'm now neutropenic. This is important for two reasons: (a) I am constantly fighting off infections, and (b) I have a constant wet, hacking cough. Now -- quick question: your back is killing you and you cough uncontrollably; when you cough, do you feel (a) terrific, (b) fair, (c) in unspeakable agony??????
So I'm in the MRI answering "C!" to this in my head over and over and somehow by the grace of God and a ton of Dilaudid I get through the MRI -- which confirms that I have a partially collapsed left lung, bilateral pneumonia (explains cough) and two broken lumbar vertebrae (explains horrible pain in back).
By now, though, I am fully neutropenic. I negotiate waking sedation for the PET scan because without this, there's no way I can hold still for them to get a reading. While initially not happy about it (because it delays his protocol) BB sees the logic in this and schedules the PET with conscious sedation for the evening of the 6th. Of course any procedure done to correct my back pain is too risky since I couldn't fight off any ensuing infection and so I am left to strike a delicate balance between Dilaudid and Ativan which is used to help sleep and fight nausea (without contributing to constipation!).
Meanwhile, I am getting twice-a-day shots in the belly to stimulate blood growth factors and to mobilize the blood stem cells from the marrow into the blood stream where they can be easily harvested for use in high-dose transplants that are upcoming. The quality and pain of these shots vary by nursing staff but most of them aren't all that bad. With no platelets, the belly does bruise rather nastily, though...I look like I got shot in the belly with one of those anti-personnel crowd dispersion devices.
Speaking of the nursing staff...they are delightful, by and large, particularly on the Myeloma floor where their dedication to patient care is extremely evident. I have only very nice things to say about them.
Well, and also one funny thing.
One woman who comes from a former Soviet republic doesn't have perfect mastery of the King's English. She was just going through all of the horrible things that can happen to me from doing a procedure while neutropenic (i.e. no immune system, no ability to overcome more trivial infection, etc.). At one point she say "I am now to walk from room to get lab results for you." She leaves the room and then comes back about three minutes later, looking very serious.
Stonefaced and Stalinesque she says "There is something I mus to tell you."
"Y-yes?????" I asked, trepidatious about the labs even as they were just routine.
"We have harpist."
Great. If I need a little "pick me up / shuffle" from some nonagenarian harpist of Armenian descent that looks like a key part in one of the early Woody Allen movies to lighten my day, I'll be sure to call. Just the other day I was reminiscing abot Pappy Boyington's squadron runs over the balkans and ondering what hapened to that little Azerbaijete Susie May Glotzsomanjanian?
Sooooooooo....with all that said and done, where are we as of Friday, March 13, 8:14PM Pacific?
1. The PET scan showed complete absence of all the focal lesions identified during my trip / scan /the week of Jan 24th. This is HUGLEY good news. First, in the qualitative sense, it means all seven of the clusters of cancer cells that were observed a few weeks ago are now obliterated. Nada. Nothin. That means there will be no more pain. No rib pain. No back pain. Nothin'. QUANTITATIVELY it is an even BIGGER deal. There is a "very, very high correlation" between this finding and long-term, deep, sustained remission / curative potential of the total therapy protocol.
BB came to share his excitement about this. He was patting my head and playfully pulled out a tiny clump of hair. He told the nurse on duty to order a haircut for me so I don't look like a homeless person. :) With this in mind, I had the building's stylist come by. He was kind enough to give me the skin-job haircut -- I tipped him well and told him to use it for a child who couldn't afford it.
2. I responded very well to chemo with manageable side effects -- but for the back pain, which shouldn't be there next time 'round, and the constipation which I now know to look out for, I'd have more or less skated through.
3. I am doing very well with harvesting and should be done after my session tomorrow with enough bags of stem cells for 6+ transplants in the future (total therapy doesn't envision needing more than two, but also anticipates future harvesting to be difficult given the amount of Revlimid and other drugs being used today).
4. I should be getting my back fixed via a simple procedure called a vertebraplasty on Monday or Tuesday, after which the back should no longer be an issue. And then I can finally get out of the hospital and go back to the Little Rock condo.
5. I anticipate beginning high-dose Melphalan plus transplant (the first of two) late next week.
THANK YOU VERY MUCH for your patience. I'm sorry it has taken me so long to update this but as you can see, there's been a lot going on and I did want a little bit of the suspense and limbo to come through and to preserve the reality of the experience. You folks are wonderful friends and an amazing source of strength and inspiration.
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