...are my arms tired and my meds lost!
Never a dull moment. I arrived with five prescriptions to fill. I already flew out with several bottles of pills and I didn't feel like bringing an entire medicine chest with me (nor do I think I'd have been allowed to fly with 20 bottles of pills). I figured why bring a bottle of 10 Levaquin pills when I'd need to refill the prescription anyway, and since I had a fresh prescription, I would just fill it in LA.
So I got here with prescriptions for Levaquin (antibiotic), Acyclovir (antiviral), Thalidomide (poison), Dexamethasone (poison) and Heparin (syringes full o' stuff that keeps the blood from clotting in my CVL). I arrived at the airport and it was a beautiful sight...my little girl had a sign welcoming me with balloons, and my wife videotaped the arrival...I ran over and dropped my bags and threw my arms around her. It must have seemed like out of a movie to anybody watching.
We drove to a pharmacy intending to just drop off the prescriptions, knowing it would be a while before they could fill them all. That's when we learned that (a) they couldn't fill a Thalidomide prescription, which was just as well because (b) the nurse had written two prescriptions for Acyclovir and none for Thalidomide!!!, (c) they don't have Heparin, (d) I forgot that I need anti-neuropathy meds -- Cymbalta and MetaNex, which I didn't have a prescription for.
(By the way, I will be put back on Tamiflu -- still have some pills left -- when I hit the second transplant so neener neener neener to anybody sleeping in line outside RIteAid trying to score some of this during the Swine Flu 2009 tour!).
Long story short, we scrambled to get a prescription for Thalidomide from Caleb (BB's physician's assistant) and he found a Walgreen's that would ship it overnight, so that arrives tomorrow, allegedly. That solved problem A and B. Problem C was a little tougher, because three pharmacies and a doctor's office said that Heparin syringes are only released to doctors and they wouldn't give me any, and that my only option would be to go into the doctor's office daily for a line flush and be charged a full doctor's visit!!!! I put the good people at Pinnacle Care on this. Around this time I realized I'd also left the kits to clean and change the dressing on the CVL. D'oh! Pinnacle Care found a place that would deliver this and the Heparin, and needed only to get a California doctor's signature on a prescription. They hounded Dr. SH, my original hematologist, and got this taken care of and so today, I got two giant bags full of medical supplies delivered to my house! Problem C solved.
We got Caleb to write prescriptions for the Cymbalta and MetaNex, so that solved problem D. Everything is in order.
Tonight, I showed Parker my CVL and she watched as I explained everything about it and how we needed to keep it clean and make sure it didn't get clogged, and then I flushed the lines with saline and heparin. She was very impressed, noting that my CVL was "weird" and she hoped I would have it removed soon. :)
It's GREAT to be back at home -- sleeping in my own bed, spending time with my family, etc. We dropped Parker off from school today together, and picked her up together...we had a nice little lunch in between pharmacy visits...even a visit to the DMV wasn't so bad because it felt normal.
My low-grade fever / back pain / night sweats continue. I had suspected this was due to hematopoesis / stem cell engraftment and some fellow Myeloma voyagers have confirmed this, which is good to know (still not sure about the back pain but it explains the flu-like symptoms). So now, the night-sweats and fever are more of a nuisance than anything else -- I'll have to change the dressing pretty soon but hey, I've got something to do it with! :) Pinnacle Care is going to send a former nurse over to explain very carefully to me exactly how to do it, although I already know, but I figure the first time doing it myself it couldn't hurt to have somebody around who has done it 1,000 times before.
Well those are my scattered thoughts. I'm tired, still, but otherwise feel good, especially now that I know the fevers aren't anything to be panicked about. :)
Be well, all of you, and thanks for your continued support!
Wednesday, April 29, 2009
Tuesday, April 28, 2009
11th hour scare...
When one goes to either the seventh floor or to BB's office, one gets one's vitals checked. Blood pressure (sitting and standing), heart rate, blood / oxygen (measured by a sensor placed over a fingernail -- measures the efficacy of oxygen getting into the blood stream as a % up to 100 -- pretty interesting) and the fastest measurement but a critical one, temperature.
If one is running a temperature any time the immune system has been compromised, it has to be watched closely. And somewhere between 101 and 101.5, it means a trip to the emergency room to have broad-spectrum IV antibiotics applied.
When I went to the 7th floor at 8AM yesterday, my temperature was a nice 97.4. Lovely. When I got checked at BB's office at 10:45, it was likewise 97.5 or something. Great!
When I spoke with Bonnie at around 2:45 as I was getting leave BB's office, I gave her a hug and she asked if I was running a temperature because my head felt warm. I told her I'd had a checked just a couple of hours ago and it was 97 and change. We shrugged it off.
Fast forward to me on the couch at 9:30. The temp is over 100. I call Bonnie, and she advises to take two Tylenol and call her in an hour. I call her in 45 minutes instead because the temp is now 101. She tells me to watch, and if it hits 101.5, get to the ER and cancel my flight. There were tense moments and I checked the damn thing every 10 minutes. I watched it go from 101 (it's peak) to 100.6, 100.4, 99.6 and I exhaled. I dozed off on the couch and woke up 30 minutes later -- about two and a half hours from taking the Tylenol, and I was at 98.3. THANK GOD.
I got up this morning and it's 99.6. I popped two Tylenol. I'm going home today, by hook or crook. I should say last night I also resumed taking Levaquin (my antibiotic) and Acyclovir (my antiviral) both because I might as well start getting ready for bridging therapy, and because I wanted to kill off whatever what is my body causing the fever. It's very odd, considering my CRP was normal yesterday as well. My *hope* is that this, along with the back pain, is being caused by hematopoesis (growth of blood cells). Flu-like symptoms are very common, but it's unusual to experience them this far out from having the Neupogen injections. Hmm...
Anyhow, I'm gonna blow this hot-dog stand and get back to LA pronto. Will let you know what happens (cut to: me being quarantined with suspect Swine Flu cases trying to get into Arkansas from Mexico City...let's hope that doesn't happen!). :)
If one is running a temperature any time the immune system has been compromised, it has to be watched closely. And somewhere between 101 and 101.5, it means a trip to the emergency room to have broad-spectrum IV antibiotics applied.
When I went to the 7th floor at 8AM yesterday, my temperature was a nice 97.4. Lovely. When I got checked at BB's office at 10:45, it was likewise 97.5 or something. Great!
When I spoke with Bonnie at around 2:45 as I was getting leave BB's office, I gave her a hug and she asked if I was running a temperature because my head felt warm. I told her I'd had a checked just a couple of hours ago and it was 97 and change. We shrugged it off.
Fast forward to me on the couch at 9:30. The temp is over 100. I call Bonnie, and she advises to take two Tylenol and call her in an hour. I call her in 45 minutes instead because the temp is now 101. She tells me to watch, and if it hits 101.5, get to the ER and cancel my flight. There were tense moments and I checked the damn thing every 10 minutes. I watched it go from 101 (it's peak) to 100.6, 100.4, 99.6 and I exhaled. I dozed off on the couch and woke up 30 minutes later -- about two and a half hours from taking the Tylenol, and I was at 98.3. THANK GOD.
I got up this morning and it's 99.6. I popped two Tylenol. I'm going home today, by hook or crook. I should say last night I also resumed taking Levaquin (my antibiotic) and Acyclovir (my antiviral) both because I might as well start getting ready for bridging therapy, and because I wanted to kill off whatever what is my body causing the fever. It's very odd, considering my CRP was normal yesterday as well. My *hope* is that this, along with the back pain, is being caused by hematopoesis (growth of blood cells). Flu-like symptoms are very common, but it's unusual to experience them this far out from having the Neupogen injections. Hmm...
Anyhow, I'm gonna blow this hot-dog stand and get back to LA pronto. Will let you know what happens (cut to: me being quarantined with suspect Swine Flu cases trying to get into Arkansas from Mexico City...let's hope that doesn't happen!). :)
Monday, April 27, 2009
Discharged and happy about it...but not as exhilarated as I thought I'd be...
First, sorry to be AWOL here but after my appointment on Thursday, they gave me a few days off so I took advantage of it by doing absolutely nothing other than watching the NFL Draft and about 30 episodes of Battlestar Galactica, which had been highly recommended by a couple of people. It's not without it's flaws, but it's a decent enough potboiler and a good way to pass a lot of time while fatigued and when lying down on a couch for 8 hours a day is the best pastime one can think of.
I went to the ol' seventh floor this morning and had labs done. White count is around 3.6, which is enough to get on an airplane so long as I don't have 15 Swine Flu cases sitting around me. Hemoglobin climbed to 9.1 which is still quite low but it's going in the right direction. Platelets are at 79, again low, but rebounding. Good thing, too, as my resilient beard and moustache have been coming in and I've been afraid to shave. For the last five days I've had this incredibly creepy growth that looks like a 7th grader trying to impress somebody with a wannabe goatee*, and one sideburn consisting of about 20 half-inch long hairs. This morning I finally broke down and shaved -- ever so carefully so as to avoid bleeding that wouldn't stop very easily. Not a drop was spilled, I'm happy to say.
On the hair front, it is worth noting that other than the top of my head, I've not really lost any. I may have mentioned this before, but I'm grateful that I didn't lose my eyebrows (what little ones I have) or eyelashes. I really wanted to avoid that undeniably disturbing Bob-Geldof-In-The-Wall look, and was fortunate to be successful.
And as usual, my potassium was low. As I type this, I've got one balloon infuser of 250ml of some kinda Potassium juice going into my line, and I've got another one that I will swap this out for in a couple more hours. These electrolytes are needed to provide the raw materials for rebuilding blood cells, so take them I shall. Plus, I guess, eat lots of potatoes and drink lots of orange juice. Bananas, evidently, are a red herring -- not even in the top 30 foods for potassium. In fact it's possible that a red Herring might actually have more potassium than a banana. Somebody at the Banana Grower's Association must have incriminating photos of the head of the Potassium Support Foundation or whomever is involved with Banana/Potassium PR efforts.
So I met with BB today, who was quite pleased with my progress and discharged me (hurray!) to go back to LA tomorrow for about 2 and a half weeks. Part of my desire in keeping it short was to avoid "bridging therapy" which is another course of Thalidomide and Dexamethasone (more on this below). I may discuss extending my furlough by another few days, then, to catch Parker's little concert that she gives at her school on May 21st. Right now I'm scheduled to return here on the 16th but if I've gotta take the damn Thalidomide and Dex anyway, what's another week? We'll see. Part of the issue is I want to get all this treatment over and done with as soon as I can, and there will be several days of more tests prior to the second transplant, so if I don't come back until the 22nd, it might be the 30th before I start the second transplant. I can probably shave 7-10 days off that if I try hard.
I also need to take care of the CVL (central venous catheter i.e. tubes that come out of my neck) to ensure it don't get infected. This is fairly easy to do, but normally, for extended trips, they remove these. Removal, as I have likely written elsewhere, consists basically of telling you to hold your breath while they yank the six inch metal wire out of your carotid artery without so much as a hearty handshake, much less any sedation/local anesthesia. This does not sound like a barrel of laughs. Moreover, as the procedure itself takes about four seconds, I can't even justify having them knock me out for it. The thing reminds me of tying a string to a loose tooth with the other end on a doorknob and then slamming the door. This, of course, would be followed up by the inevitable re-insertion of the line when I return, and that is something that I would want sedation for (as everyplace in the world except here does it under sedation). So by keeping the thing in, I can avoid two unpleasant procedures. Sounds like a win to me. BB chuckled at me a little but then he's not the one going through it. We also bonded briefly over a dislike of taking turboprop planes, which is about 90% of the air traffic in and out of the bustling Little Rock National Airport. So he is not impervious to phobias!
BB then narrated his notes to Dr. SF, and described me as "at this time, in very good partial remission at least" (meaning I could be headed for complete remission). I knew this was the case, but hearing him dictate it was very nice. I am a little troubled by my modestly elevated liver enzymes, which were caused by antifungal meds that I've not been on in two weeks -- and I haven't had more than three or four glasses of wine/beer in the last two weeks so it's not that. BB offered his opinion that I might need to drink more! :) We'll watch these although they were very low during the month of March so I'm not sure what is going on.
I was in high spirits until they came in and started talking about bridging therapy. I was really hoping to be off pills for a couple of weeks -- especially off poison. Bridging therapy is used between transplants to ensure the cancer doesn't creep back. The time between transplants is 6 weeks to 6 months, and since BB had previously said "don't worry about bridging therapy" to me an Jill, we assumed I would need it. Certainly if I'm only going to be gone two and a half weeks, I wouldn't need it, right? Turns out: wrong. And it's extensive. Thalidomide DAILY (albeit in a reduced dose of 100mg) for the entire time I am gone. On the plus side, I guess this oughta kill the hell out of whatever cancer is left (I will also be on dex in reduced dose for four days). But between constipation and more importantly neuropathy, I really didn't want to be on Thalidomide for an extended period of time. Hopefully I won't develop anything. But this does mean that now, in addition to these pills and Levaquin and Acyclovir, I've also got to bring all my damn stool softeners and a least one anti-nausea tablet/sleeping aid plus the Metanex B6/B12 pill and the Cymbalta both for the neuropathy. I'm back to a pill breakfast and will probably be stopped at the airport to account for the thirty bottles of prescription meds I'm bringing with me. Sigh. Oh well. Better to have the pill breakfast back in LA than here.
I will also be making weekly trips to a lab out there to get blood work done. Hopefully they can draw from the Cook catheter because otherwise I am looking at those lovely 30-tube draws I love so much. Note to self: check with SH's office and make sure they do this.
Ugh. I really, really hate this stupid disease.
When I return, I'll go through three days of re-staging testing. As we speak, I am once again demanding IV sedation for the bone marrow, and I am arguing against a gene array analysis because we've reached the stage where this isn't being used for my own therapy but is being thrown in the ol' database for posterity's sake. That would be good and fine for a urine sample but I don't feel like approving another course of mining for ore deep in my hip (deeper than a regular bone marrow). I used to be quite proud of my backside and now not only has it lost all its muscle tone from the dex, I've got four dime-sized black circles from previous bone marrows and gene arrays that have been there for weeks and are going noplace. They're awful, and I don't want any more of them.
Oh well.
Putting a positive spin on all this, I'll be taking so much poison over the next few weeks that my Myeloma might even be completely gone before I get back -- at a minimum I expect the M-spike to fall even further. So...there it is.
Okay folks, as always, thanks for your support, emails, comments, prayers, positive vibes, and everything else. I will write during my furlough, but probably not daily, so don't be concerned if you don't hear that regularly from me until the middle of next month. I'm off to convince Bonnie the nurse that I don't need a gene array -- or rather, I'm off the have her convince me otherwise. :)
P.S. Bonnie told me to say no to the gene array. That clinches it!
----
*I note that what is commonly called a goatee is actually a Van Dyke (no relation). The goatee is only the tuft on the chin, whereas the Van Dyke has the noble wraparound moustache thing going on.
I went to the ol' seventh floor this morning and had labs done. White count is around 3.6, which is enough to get on an airplane so long as I don't have 15 Swine Flu cases sitting around me. Hemoglobin climbed to 9.1 which is still quite low but it's going in the right direction. Platelets are at 79, again low, but rebounding. Good thing, too, as my resilient beard and moustache have been coming in and I've been afraid to shave. For the last five days I've had this incredibly creepy growth that looks like a 7th grader trying to impress somebody with a wannabe goatee*, and one sideburn consisting of about 20 half-inch long hairs. This morning I finally broke down and shaved -- ever so carefully so as to avoid bleeding that wouldn't stop very easily. Not a drop was spilled, I'm happy to say.
On the hair front, it is worth noting that other than the top of my head, I've not really lost any. I may have mentioned this before, but I'm grateful that I didn't lose my eyebrows (what little ones I have) or eyelashes. I really wanted to avoid that undeniably disturbing Bob-Geldof-In-The-Wall look, and was fortunate to be successful.
And as usual, my potassium was low. As I type this, I've got one balloon infuser of 250ml of some kinda Potassium juice going into my line, and I've got another one that I will swap this out for in a couple more hours. These electrolytes are needed to provide the raw materials for rebuilding blood cells, so take them I shall. Plus, I guess, eat lots of potatoes and drink lots of orange juice. Bananas, evidently, are a red herring -- not even in the top 30 foods for potassium. In fact it's possible that a red Herring might actually have more potassium than a banana. Somebody at the Banana Grower's Association must have incriminating photos of the head of the Potassium Support Foundation or whomever is involved with Banana/Potassium PR efforts.
So I met with BB today, who was quite pleased with my progress and discharged me (hurray!) to go back to LA tomorrow for about 2 and a half weeks. Part of my desire in keeping it short was to avoid "bridging therapy" which is another course of Thalidomide and Dexamethasone (more on this below). I may discuss extending my furlough by another few days, then, to catch Parker's little concert that she gives at her school on May 21st. Right now I'm scheduled to return here on the 16th but if I've gotta take the damn Thalidomide and Dex anyway, what's another week? We'll see. Part of the issue is I want to get all this treatment over and done with as soon as I can, and there will be several days of more tests prior to the second transplant, so if I don't come back until the 22nd, it might be the 30th before I start the second transplant. I can probably shave 7-10 days off that if I try hard.
I also need to take care of the CVL (central venous catheter i.e. tubes that come out of my neck) to ensure it don't get infected. This is fairly easy to do, but normally, for extended trips, they remove these. Removal, as I have likely written elsewhere, consists basically of telling you to hold your breath while they yank the six inch metal wire out of your carotid artery without so much as a hearty handshake, much less any sedation/local anesthesia. This does not sound like a barrel of laughs. Moreover, as the procedure itself takes about four seconds, I can't even justify having them knock me out for it. The thing reminds me of tying a string to a loose tooth with the other end on a doorknob and then slamming the door. This, of course, would be followed up by the inevitable re-insertion of the line when I return, and that is something that I would want sedation for (as everyplace in the world except here does it under sedation). So by keeping the thing in, I can avoid two unpleasant procedures. Sounds like a win to me. BB chuckled at me a little but then he's not the one going through it. We also bonded briefly over a dislike of taking turboprop planes, which is about 90% of the air traffic in and out of the bustling Little Rock National Airport. So he is not impervious to phobias!
BB then narrated his notes to Dr. SF, and described me as "at this time, in very good partial remission at least" (meaning I could be headed for complete remission). I knew this was the case, but hearing him dictate it was very nice. I am a little troubled by my modestly elevated liver enzymes, which were caused by antifungal meds that I've not been on in two weeks -- and I haven't had more than three or four glasses of wine/beer in the last two weeks so it's not that. BB offered his opinion that I might need to drink more! :) We'll watch these although they were very low during the month of March so I'm not sure what is going on.
I was in high spirits until they came in and started talking about bridging therapy. I was really hoping to be off pills for a couple of weeks -- especially off poison. Bridging therapy is used between transplants to ensure the cancer doesn't creep back. The time between transplants is 6 weeks to 6 months, and since BB had previously said "don't worry about bridging therapy" to me an Jill, we assumed I would need it. Certainly if I'm only going to be gone two and a half weeks, I wouldn't need it, right? Turns out: wrong. And it's extensive. Thalidomide DAILY (albeit in a reduced dose of 100mg) for the entire time I am gone. On the plus side, I guess this oughta kill the hell out of whatever cancer is left (I will also be on dex in reduced dose for four days). But between constipation and more importantly neuropathy, I really didn't want to be on Thalidomide for an extended period of time. Hopefully I won't develop anything. But this does mean that now, in addition to these pills and Levaquin and Acyclovir, I've also got to bring all my damn stool softeners and a least one anti-nausea tablet/sleeping aid plus the Metanex B6/B12 pill and the Cymbalta both for the neuropathy. I'm back to a pill breakfast and will probably be stopped at the airport to account for the thirty bottles of prescription meds I'm bringing with me. Sigh. Oh well. Better to have the pill breakfast back in LA than here.
I will also be making weekly trips to a lab out there to get blood work done. Hopefully they can draw from the Cook catheter because otherwise I am looking at those lovely 30-tube draws I love so much. Note to self: check with SH's office and make sure they do this.
Ugh. I really, really hate this stupid disease.
When I return, I'll go through three days of re-staging testing. As we speak, I am once again demanding IV sedation for the bone marrow, and I am arguing against a gene array analysis because we've reached the stage where this isn't being used for my own therapy but is being thrown in the ol' database for posterity's sake. That would be good and fine for a urine sample but I don't feel like approving another course of mining for ore deep in my hip (deeper than a regular bone marrow). I used to be quite proud of my backside and now not only has it lost all its muscle tone from the dex, I've got four dime-sized black circles from previous bone marrows and gene arrays that have been there for weeks and are going noplace. They're awful, and I don't want any more of them.
Oh well.
Putting a positive spin on all this, I'll be taking so much poison over the next few weeks that my Myeloma might even be completely gone before I get back -- at a minimum I expect the M-spike to fall even further. So...there it is.
Okay folks, as always, thanks for your support, emails, comments, prayers, positive vibes, and everything else. I will write during my furlough, but probably not daily, so don't be concerned if you don't hear that regularly from me until the middle of next month. I'm off to convince Bonnie the nurse that I don't need a gene array -- or rather, I'm off the have her convince me otherwise. :)
P.S. Bonnie told me to say no to the gene array. That clinches it!
----
*I note that what is commonly called a goatee is actually a Van Dyke (no relation). The goatee is only the tuft on the chin, whereas the Van Dyke has the noble wraparound moustache thing going on.
Tuesday, April 21, 2009
Day + 12 -- bring on the germs!
Okay, I have an immune system again.
White count is up to 6.16. High enough to ward off germs, and most importantly high enough to avoid the need for another Neupogen shot!
Hemoglobin is up to 8.8. Other than after receiving blood, since beginning treatment I have not experienced rising Hemoglobin. Could it be that my new marrow is actually making red blood again, and there aren't enough malignant plasma cells to get in the way? Time will tell.
Platelets still languishing at 31, but without the dreaded Neupogen shot to stunt their rebound, they should start springing back up.
All my chemistry is good, although Potassium slipped a bit so I am back on the potato diet this evening, and probably tomorrow. They even gave me a day off from any kind of infusion -- I will go back Thursday, Saturday and then early Monday AM so BB has the most recent lab data to work from during my discharge appointment with him at 10:30.
I also got a partial update of tumor markers. IgG is down to 1430 from 1600 a couple of days before. Getting close to normal ranges! It will all depend on the M spike, of course, which is unfortunately still in the lab. Lambda free light chains are squarely normal. Beta-2 Microglobulin, which is something that is normal until Myeloma causes it to rise to high levels, has fallen from 2.4 (versus normal range of 0-2) to 1.3 from the start of treatment.
I won't be happy until that M-spike is totally gone, and my guess is right now it is probably at 1.1 or so. But I am getting very close to being in what would clinically be defined as "very good partial remission." That's not the gold standard but it is a damn good start!
White count is up to 6.16. High enough to ward off germs, and most importantly high enough to avoid the need for another Neupogen shot!
Hemoglobin is up to 8.8. Other than after receiving blood, since beginning treatment I have not experienced rising Hemoglobin. Could it be that my new marrow is actually making red blood again, and there aren't enough malignant plasma cells to get in the way? Time will tell.
Platelets still languishing at 31, but without the dreaded Neupogen shot to stunt their rebound, they should start springing back up.
All my chemistry is good, although Potassium slipped a bit so I am back on the potato diet this evening, and probably tomorrow. They even gave me a day off from any kind of infusion -- I will go back Thursday, Saturday and then early Monday AM so BB has the most recent lab data to work from during my discharge appointment with him at 10:30.
I also got a partial update of tumor markers. IgG is down to 1430 from 1600 a couple of days before. Getting close to normal ranges! It will all depend on the M spike, of course, which is unfortunately still in the lab. Lambda free light chains are squarely normal. Beta-2 Microglobulin, which is something that is normal until Myeloma causes it to rise to high levels, has fallen from 2.4 (versus normal range of 0-2) to 1.3 from the start of treatment.
I won't be happy until that M-spike is totally gone, and my guess is right now it is probably at 1.1 or so. But I am getting very close to being in what would clinically be defined as "very good partial remission." That's not the gold standard but it is a damn good start!
Monday, April 20, 2009
Day + 11 -- and a break in the cloud cover coming up!
Hello folks. Jill returned from LA (and the kids) last night and my brother Pete departed for his home in Chicago. The water brigade of friends and family that have helped out by visiting so Jill can get back to the kids every now and then has been so important to us and we are very, very appreciative!
I barely slept last night -- don't know why but I'm exhausted. The back aches, and I have lingering GI issues any time I try to eat something with so much as a gram of fiber, so I'm sticking to all the food that is bad for you. Hello pasta, my old friend -- it's time to eat you again.
My blood counts have turned the corner. White blood cells bounced up to 2.1 today -- which means I am technically probably no longer neutropenic, although I am going to continue on as though I am for another day or so. Platelets are still only 39, but that's an improvement. Their recovery is inhibited by the growth factor that I continue to receive via burning injection every day to stimulate white blood cell growth. If my white remain above 2 tomorrow (and they certainly should) then tomorrow's Neupogen shot should be the last for this cycle. My poor arms are so bruised (that's what happens when you can't clot -- a simple needle prick is an invitation for internal bleeding) that I look like a junkie, so a respite is very welcome.
Red blood counts remain low -- hemoglobin is flat at 8.4. But I have come to live with this, and realize that it will take a long time for these to recover. CRP is down today from 26 to 17 -- still a little high but to be expected given hematopoesis and the fact that it came down is a very good sign. No infections, looks like! Potassium was on the low end of normal but they gave me a take-home balloon infuser to prop it up. Magnesium is fine. Liver is still irritated from some combination of the anti-fungal meds that I stopped eight days ago and the overall protocol, but the numbers are only a little high.
Most importantly, I have a discharge appointment with BB on Monday at 10:30. I anticipate he'll give me a solid two weeks to go home and see the kids before returning here for transplant #2. This is happening none to soon -- we need to get home to see the kids for both their sake and ours. Jill will go back the day after tomorrow, assuming I am in a position to care for myself, and then I'll be here by myself for a few days before returning, hopefully, Tuesday.
Even better, I am told that my cancer markers will continue to go down -- the already low numbers are not a plateau. There's some chance that I will be in complete remission after the first transplant, and if not, it looks likely that it will be very good partial remission. The second transplant, hopefully, will get us the rest of the way.
Lastly, they have told me that I can keep my Cook catheter in place, which is good because it's two less painful procedures that I need to endure (removal, which is done without any sedation or local anesthetic, and installation of a new one upon return). I just need to flush it daily, which I've learned to do.
This is a horrible disease, and the treatment (particularly the one I chose) is not very pleasant -- but things are going as well as we could have hoped. I am absolutely confident that all of your support, prayers, positive vibes and thoughts have an impact on this -- thank you all very, very much.
More news tomorrow.
I barely slept last night -- don't know why but I'm exhausted. The back aches, and I have lingering GI issues any time I try to eat something with so much as a gram of fiber, so I'm sticking to all the food that is bad for you. Hello pasta, my old friend -- it's time to eat you again.
My blood counts have turned the corner. White blood cells bounced up to 2.1 today -- which means I am technically probably no longer neutropenic, although I am going to continue on as though I am for another day or so. Platelets are still only 39, but that's an improvement. Their recovery is inhibited by the growth factor that I continue to receive via burning injection every day to stimulate white blood cell growth. If my white remain above 2 tomorrow (and they certainly should) then tomorrow's Neupogen shot should be the last for this cycle. My poor arms are so bruised (that's what happens when you can't clot -- a simple needle prick is an invitation for internal bleeding) that I look like a junkie, so a respite is very welcome.
Red blood counts remain low -- hemoglobin is flat at 8.4. But I have come to live with this, and realize that it will take a long time for these to recover. CRP is down today from 26 to 17 -- still a little high but to be expected given hematopoesis and the fact that it came down is a very good sign. No infections, looks like! Potassium was on the low end of normal but they gave me a take-home balloon infuser to prop it up. Magnesium is fine. Liver is still irritated from some combination of the anti-fungal meds that I stopped eight days ago and the overall protocol, but the numbers are only a little high.
Most importantly, I have a discharge appointment with BB on Monday at 10:30. I anticipate he'll give me a solid two weeks to go home and see the kids before returning here for transplant #2. This is happening none to soon -- we need to get home to see the kids for both their sake and ours. Jill will go back the day after tomorrow, assuming I am in a position to care for myself, and then I'll be here by myself for a few days before returning, hopefully, Tuesday.
Even better, I am told that my cancer markers will continue to go down -- the already low numbers are not a plateau. There's some chance that I will be in complete remission after the first transplant, and if not, it looks likely that it will be very good partial remission. The second transplant, hopefully, will get us the rest of the way.
Lastly, they have told me that I can keep my Cook catheter in place, which is good because it's two less painful procedures that I need to endure (removal, which is done without any sedation or local anesthetic, and installation of a new one upon return). I just need to flush it daily, which I've learned to do.
This is a horrible disease, and the treatment (particularly the one I chose) is not very pleasant -- but things are going as well as we could have hoped. I am absolutely confident that all of your support, prayers, positive vibes and thoughts have an impact on this -- thank you all very, very much.
More news tomorrow.
Sunday, April 19, 2009
Day + 10
Well, I tip my hat to my fellow sufferer that made it out of the hospital in 10 days. I didn't quite get there, but that's okay!
Today's tale of the tape: white count at 0.5, hemoglobin at 8.4, platelets at 16 (I needed another bag today), CRP at 28, and potassium and magnesium in normal levels. That translated to a quick trip to the hospital, all things considered (the platelets infuse in about 10 minutes).
The Neupogen injections are getting old -- and my back and head hurt from them, but this is temporary. Hopefully by Wednesday I will have an immune system again, and then we can see when I can get back to LA for a couple of weeks between transplants.
More news as it develops.
Today's tale of the tape: white count at 0.5, hemoglobin at 8.4, platelets at 16 (I needed another bag today), CRP at 28, and potassium and magnesium in normal levels. That translated to a quick trip to the hospital, all things considered (the platelets infuse in about 10 minutes).
The Neupogen injections are getting old -- and my back and head hurt from them, but this is temporary. Hopefully by Wednesday I will have an immune system again, and then we can see when I can get back to LA for a couple of weeks between transplants.
More news as it develops.
Saturday, April 18, 2009
Day + 9 -- counts up, cancer down!
I am beginning to feel the inevitable fatigue that comes from low red blood, and I'm getting the side-effects of the neupogen -- headache and back pain, most noticeably, and as soon as I brag about the resilience of my GI tract, there's backsliding there as well. But frankly, I weathered this pretty well so I'm not complaining -- really just making notes so I'll be able to prepare for the second transplant in a few weeks.
The second transplant will be important, because I definitely want complete remission and I'm not there yet...but the numbers thus far are promising. First, my white blood cells are up to 0.1...very low, but certainly higher than 0.02. Platelets were at 22 today, again very low but up from 16. Hemoglobin (the key marker for red blood) is down to 8.2 from 8.5 and 9.1 the day before, which explains my fatigue. They asked if I wanted blood, but I said not yet -- keeping the WHO warnings in the back of my mind, I figure why take more than I absolutely need. They will infuse if it falls below 8, though, which it probably will. Potassium was borderline so I had to promise to eat a baked potato today (a very good source) and we'll see tomorrow if I need an infuser of it. Lastly, CRP is about 20 now, and if that increases again (as it likely will) they will give me an IV antibiotic tomorrow as well.
So tomorrow I may be full of additives and that could make for a long day at the hospital. Oh well.
I asked for my most recent tumor markers as of last Thursday (it takes two days to process the results). These are from when I hit the floor with the white count of 0.02, so these likely represent (I am guessing, anyhow) as low as the numbers will get from this transplant. I could be mistaken but I'm trying to be conservative, so I'm sticking with the presumption that this is the new "plateau" until the next phase of treatment...assuming it doesn't come back:
* M spike is 1.3 now (grams per deciliter of blood). Down from 1.6 a few days earlier, from 4 at both diagnosis and pre-transplant, and from 8 at the peak.
* Lambda free light chains crept up from 0 to 1.8...still squarely normal but I am reminded now that the light chains rise as counts recover so I'm not going to focus on this metric any longer.
* IgG down to 1800 from 2100 a few days ago, 6000 pre transplant and as high as 11000 before treatment. Normal is 700 to 1400.
After the second transplant, I have to imagine IgG will be normal and the M spike will be next to nothing -- still not good enough as I want it to be zero...but things are moving in the right direction.
Thanks as always for your comments -- it's great to hear from you all!
The second transplant will be important, because I definitely want complete remission and I'm not there yet...but the numbers thus far are promising. First, my white blood cells are up to 0.1...very low, but certainly higher than 0.02. Platelets were at 22 today, again very low but up from 16. Hemoglobin (the key marker for red blood) is down to 8.2 from 8.5 and 9.1 the day before, which explains my fatigue. They asked if I wanted blood, but I said not yet -- keeping the WHO warnings in the back of my mind, I figure why take more than I absolutely need. They will infuse if it falls below 8, though, which it probably will. Potassium was borderline so I had to promise to eat a baked potato today (a very good source) and we'll see tomorrow if I need an infuser of it. Lastly, CRP is about 20 now, and if that increases again (as it likely will) they will give me an IV antibiotic tomorrow as well.
So tomorrow I may be full of additives and that could make for a long day at the hospital. Oh well.
I asked for my most recent tumor markers as of last Thursday (it takes two days to process the results). These are from when I hit the floor with the white count of 0.02, so these likely represent (I am guessing, anyhow) as low as the numbers will get from this transplant. I could be mistaken but I'm trying to be conservative, so I'm sticking with the presumption that this is the new "plateau" until the next phase of treatment...assuming it doesn't come back:
* M spike is 1.3 now (grams per deciliter of blood). Down from 1.6 a few days earlier, from 4 at both diagnosis and pre-transplant, and from 8 at the peak.
* Lambda free light chains crept up from 0 to 1.8...still squarely normal but I am reminded now that the light chains rise as counts recover so I'm not going to focus on this metric any longer.
* IgG down to 1800 from 2100 a few days ago, 6000 pre transplant and as high as 11000 before treatment. Normal is 700 to 1400.
After the second transplant, I have to imagine IgG will be normal and the M spike will be next to nothing -- still not good enough as I want it to be zero...but things are moving in the right direction.
Thanks as always for your comments -- it's great to hear from you all!
Friday, April 17, 2009
Day +8
Have hit the bottom and am ever so slightly creeping back up now. White count today was 0.03...very, very low but higher, after all, than 0.02. Platelets were only 16 so they gave me more. They are getting ready to give me a unit of blood, although I'm not yet in need of it. Otherwise chemistry looks good. CRP is 11.6, which is where it was yesterday...we anticipate a rise in this and a low-grade fever as blood counts go up. Hopefully in 3-4 days I'll be back to normal. Need to get there in two days to tie my fellow Myeloma patient blog reader who made it in 10! :)
Feeling pretty good other than just very tired. No more GI issues (actually been about three days), thank God! Now my only side effect is exhaustion -- and I can manage with that just fine.
Be well everyone!
Feeling pretty good other than just very tired. No more GI issues (actually been about three days), thank God! Now my only side effect is exhaustion -- and I can manage with that just fine.
Be well everyone!
Thursday, April 16, 2009
Day +7
White counts remained at 0.02. Platelets fell to 12(!!) so they infused me with some more to bring it up north of 20. I guess that makes a difference at some level (honestly at 12 I was afraid I was going to get internal bleeding in my backside just from sitting down on something) but it still seems very low. All the other chemistry numbers are pretty good, although the liver is still irritated from the Fluconazole that I took ten days ago (or from chemo, perhaps). CRP crept up to 11 but that's still quite low, and I have no fever or other indications of anything wrong, so everything is in good shape. I expect CRP to increase due to hematopoesis (per BB's observation last time) so I won't be surprised if that comes up. Meanwhile, hopefully my white counts and platelets will start to recover soon -- I'm getting tired of the neupogen shots, which burn quite a bit (though they hurt less in the arm than in the belly...good to know for next transplant).
I feel pretty good, all things considered, although I felt better yesterday with the news on the tumor markers. So in this little controlled experiment, when all the labs are the same from day one to day two and the only independent variable is news about the treatment working, it's proof positive that good news makes a difference. :)
Jill is getting to see the kids tomorrow, which is great. My brother Pete is coming to relieve her for the weekend -- I'm afraid he's in for an (even more) boring time this weekend as I can't leave the apartment, basically. I'm sure we'll manage.
I feel pretty good, all things considered, although I felt better yesterday with the news on the tumor markers. So in this little controlled experiment, when all the labs are the same from day one to day two and the only independent variable is news about the treatment working, it's proof positive that good news makes a difference. :)
Jill is getting to see the kids tomorrow, which is great. My brother Pete is coming to relieve her for the weekend -- I'm afraid he's in for an (even more) boring time this weekend as I can't leave the apartment, basically. I'm sure we'll manage.
Wednesday, April 15, 2009
Day +6...I hit the wall...and so does cancer!
So first, the counts: whites are at 0.02. Lowest I've ever been. Literally, I think two white cells keeping each other company. Platelets are at 27 (normal is 150 to 500). They will likely give me a transfusion of platelets tomorrow so I don't end up like one of the Romanov kids. They are also preparing to give me more blood (take THAT World Health Organization) in the event the hemoglobin falls much lower.
Surprisingly, I don't feel horrible...although some of this is psychological rather than physical. All of my labs are where they should be...CRP (the tell-all measure of impending infection) is normal, which is rare for somebody with no immune system. So I pressed my luck and asked the APN for the tumor markers. She came back ten minutes later and said "I think you'll be in the mood for a Disney parade." And so I am.
There are three markers that are looked at:
* M-spike measures the presence of the protein in my blood that is manufactured as a result of the myeloma cells. It is this M-spike that was observed when I was first diagnosed. The M-spike at diagnosis was around 4, and it increased to around 8 right before my treatment began. As of two days ago, it is at 1.6! Obviously, we want this to be zero, but it will continue to fall and this is a very good sign.
* Lamba free light chain is a metric of tumor activity, although mine has never been all that high -- except as a result of therapy (BB noted the treatment causes a spike which later falls). At any rate, normal is below 1. Mine was around 3, if memory serves, and went up to as high as 50 or so. It is now effectively ZERO.
* IgG is a measure of the antibodies created by both legitimate plasma cells, and by the myeloma. Normal is 700 to 1400. Mine was as high as 11000 before treatment. After induction they fell to 6500. Three days ago, they were at 2100, and still falling.
Bottom line: the therapy is working. I am not in remission yet, but the cancer has been kicked square in the face.
Onward!
Surprisingly, I don't feel horrible...although some of this is psychological rather than physical. All of my labs are where they should be...CRP (the tell-all measure of impending infection) is normal, which is rare for somebody with no immune system. So I pressed my luck and asked the APN for the tumor markers. She came back ten minutes later and said "I think you'll be in the mood for a Disney parade." And so I am.
There are three markers that are looked at:
* M-spike measures the presence of the protein in my blood that is manufactured as a result of the myeloma cells. It is this M-spike that was observed when I was first diagnosed. The M-spike at diagnosis was around 4, and it increased to around 8 right before my treatment began. As of two days ago, it is at 1.6! Obviously, we want this to be zero, but it will continue to fall and this is a very good sign.
* Lamba free light chain is a metric of tumor activity, although mine has never been all that high -- except as a result of therapy (BB noted the treatment causes a spike which later falls). At any rate, normal is below 1. Mine was around 3, if memory serves, and went up to as high as 50 or so. It is now effectively ZERO.
* IgG is a measure of the antibodies created by both legitimate plasma cells, and by the myeloma. Normal is 700 to 1400. Mine was as high as 11000 before treatment. After induction they fell to 6500. Three days ago, they were at 2100, and still falling.
Bottom line: the therapy is working. I am not in remission yet, but the cancer has been kicked square in the face.
Onward!
Tuesday, April 14, 2009
Day +5...and some thoughts on positive thinking
First, the mundane: the APN was right on the money. White cells cratered today...count is at 0.2. I think that means there are 20 white cells left in my blood. Like the Jedi knights, hunted to extinction...like the last stragglers of Arthur's knights searching for the grail...like the sordid characters in Rick's bar in Casablanca...these last white cells are hanging out on some street corner with their last pack of smokes while the rest of my bloodstream lies in a shambles around them.
Anyhow...enough of that. All the other labs look good and things are heading in the right direction. Platelets are only 40...which means if I so much as look at something the wrong way I'll bleed out. So the next few days are important ones, and I'm going to lay low and hope I can stay away from any kind of infection. So far, so good.
Now...I have been reflecting a bit on the nature of my attitude in this struggle...and I did want to make an observation or two. I'm not making myself out to be a heroic figure or anything like that...and it's funny since in my past life I had a very cynical sense of humor (okay, okay, it comes out here as well) and was anything but a pollyanna. But I was struck my something about my approach that is probably worth commenting on for my own reflection if nothing else.
Somebody who also keeps a blog on cancer was kind enough to reach out to me a couple of days ago, and I looked at that person's blog. Now I am NOT passing judgment on this person in any way, nor am I taking ANYTHING away from their struggle, so please don't take this that way. But two of the last three entries focused on secondary cancer from treatments used in chemotherapy, and on the dangers of receiving blood. It's hard to say where "cautionary" ends and "alarmist" begins, but they seemed pretty dire.
I choose differently. Yes, there are risks to open-ended use of some chemo (in my induction, Etoposide and Cyclophosphomide are both associated with long-term acute myelogenous leukemia, as early blog readers will know from my research on them). However, these risks are small -- 2% in the population at large, and that includes much larger doses of these two drugs than I received. Yes, the world health organization has sounded alarms about getting too many blood transfusions...but the fact is blood is pretty essential to well-being and if you don't have any blood, you feel like you've got eight toes in the grave, believe me. Getting a transfusion when one's red counts are very low is a sensible thing.
What I'm trying to say is that my approach has been to ask questions, make sure my providers know what they are doing and that they have considered these issues, and then place my confidence in the protocol. Dwelling on everything that can go wrong is defeatist and works against the body's efforts to heal. I'm not going to don Tibetan robes and move into some ashram someplace, but I do believe that the mind and body are part of the same system and that having confidence in the treatment is essential to it working. Frankly, I think part of the reason I contracted cancer in the first place is that I was cavalier about my well-being. No more. I choose to live. I choose to beat cancer. I choose to have confidence in my protocol, and I choose not to dwell on every little thing that can go wrong. This is not the same thing as choosing ignorance. It is, instead, a categorical rejection of defeatism and a categorical rejection of the little demons of doubt that trip us up.
Okay. Enough philosophizing. I'll try to make sure tomorrow gets some good inbred jokes or something. :)
P.S. Forgot to mention, the stink on floor 7 is HORRIBLE. I only really started noticing it the last three days or so, but it's that smell of the preservative in the transplant bags...like rotten beef boullion...sickly sweet...ugh. I chew gum to manage through it. Yuck.
Anyhow...enough of that. All the other labs look good and things are heading in the right direction. Platelets are only 40...which means if I so much as look at something the wrong way I'll bleed out. So the next few days are important ones, and I'm going to lay low and hope I can stay away from any kind of infection. So far, so good.
Now...I have been reflecting a bit on the nature of my attitude in this struggle...and I did want to make an observation or two. I'm not making myself out to be a heroic figure or anything like that...and it's funny since in my past life I had a very cynical sense of humor (okay, okay, it comes out here as well) and was anything but a pollyanna. But I was struck my something about my approach that is probably worth commenting on for my own reflection if nothing else.
Somebody who also keeps a blog on cancer was kind enough to reach out to me a couple of days ago, and I looked at that person's blog. Now I am NOT passing judgment on this person in any way, nor am I taking ANYTHING away from their struggle, so please don't take this that way. But two of the last three entries focused on secondary cancer from treatments used in chemotherapy, and on the dangers of receiving blood. It's hard to say where "cautionary" ends and "alarmist" begins, but they seemed pretty dire.
I choose differently. Yes, there are risks to open-ended use of some chemo (in my induction, Etoposide and Cyclophosphomide are both associated with long-term acute myelogenous leukemia, as early blog readers will know from my research on them). However, these risks are small -- 2% in the population at large, and that includes much larger doses of these two drugs than I received. Yes, the world health organization has sounded alarms about getting too many blood transfusions...but the fact is blood is pretty essential to well-being and if you don't have any blood, you feel like you've got eight toes in the grave, believe me. Getting a transfusion when one's red counts are very low is a sensible thing.
What I'm trying to say is that my approach has been to ask questions, make sure my providers know what they are doing and that they have considered these issues, and then place my confidence in the protocol. Dwelling on everything that can go wrong is defeatist and works against the body's efforts to heal. I'm not going to don Tibetan robes and move into some ashram someplace, but I do believe that the mind and body are part of the same system and that having confidence in the treatment is essential to it working. Frankly, I think part of the reason I contracted cancer in the first place is that I was cavalier about my well-being. No more. I choose to live. I choose to beat cancer. I choose to have confidence in my protocol, and I choose not to dwell on every little thing that can go wrong. This is not the same thing as choosing ignorance. It is, instead, a categorical rejection of defeatism and a categorical rejection of the little demons of doubt that trip us up.
Okay. Enough philosophizing. I'll try to make sure tomorrow gets some good inbred jokes or something. :)
P.S. Forgot to mention, the stink on floor 7 is HORRIBLE. I only really started noticing it the last three days or so, but it's that smell of the preservative in the transplant bags...like rotten beef boullion...sickly sweet...ugh. I chew gum to manage through it. Yuck.
Monday, April 13, 2009
Day + 4: I am strong like bull...or am I?
So today was a good day. Other than being exhausted and continued GI issues, I felt pretty good.
They took labs. It was peripheral (arm) blood draw day, which I vetoed. I'm just tired of being poked, prodded, stabbed, etc. They relented immediately and took blood from the central line...which of course makes me think they don't REALLY need to take it from the arm. Anyhow...
My labs come back. My white count is up! 2.6! Not even neutropenic! My platelets are low, at 70, but all the chemistry is normal. Could I really have been neutropenic for one day? Am I really rebounding? Am I, as some crazed Turkish wrestler would say, "strong like bull?"
No, says the APN (which somehow stands for "merciless witch", as well as "head nurse in charge"). She claims the white count is the result of the growth factor, and tomorrow I will come crashing down. Oh well. It was a pleasant 5 minute dream. I'm in for another 10 days of neutropenia, she says, and who am I to argue?
Still, I'll try to break that record.
They took labs. It was peripheral (arm) blood draw day, which I vetoed. I'm just tired of being poked, prodded, stabbed, etc. They relented immediately and took blood from the central line...which of course makes me think they don't REALLY need to take it from the arm. Anyhow...
My labs come back. My white count is up! 2.6! Not even neutropenic! My platelets are low, at 70, but all the chemistry is normal. Could I really have been neutropenic for one day? Am I really rebounding? Am I, as some crazed Turkish wrestler would say, "strong like bull?"
No, says the APN (which somehow stands for "merciless witch", as well as "head nurse in charge"). She claims the white count is the result of the growth factor, and tomorrow I will come crashing down. Oh well. It was a pleasant 5 minute dream. I'm in for another 10 days of neutropenia, she says, and who am I to argue?
Still, I'll try to break that record.
Recap of non-Easterly feelings
Call me what you will, but yesterday was no day to mock my fellow Man.
Today, however, is. I'm overdue for a bit of local color.
First, my physical state. Not bad, all things considered. I'm on good anti-nausea meds. I don't have the mouth sores yet (and I am rinsing religiously with that awful Biotene stuff that supposedly keeps my mouth full of good bacteria). I got a Neupogen (growth factor) shot yesterday, which they gave me in the sub-cutaneous fat of my arm which was a bit less painful than the belly, and this is going to create flu-like effects (huzzah!) plus bone pain (double huzzah!) as my poor mangled marrow is jostled to make white cells. So be it.
That leaves me with one remaining condition. And here, I am reminded of a statistical observation that came to light when I was in high school. It seems they compared SAT scores among children who regularly watched M*A*S*H versus those who regularly watched The Dukes of Hazzard, and there was something like a 200 point differential. Correlation or causality, who can say, but either way, I was a M*A*S*H kid.
Now there are a number of ways I can go with this...considering I am in the physical equivalent of Hazzard County as I type this. But where I'm going is, sadly, back to the GI tract. I remember the butt of almost every joke in M*A*S*H was either "Frank Burns" or "dysentery." At 14, I'm sure I had no idea what dysentery was, but they sure used it a lot. It was their go-to line. Like Carrottop pulling a rubber chicken out of the crate, like Don Rickles calling somebody "hockeypuck," Larry Gelbart and the M*A*S*H writers went straight to the dysentery gag.
And so here I am. The one impact of chemo that I can't avoid is this horrible persistent diarrhea. The awful constipation that hospitalized me after induction is but a happy memory...like distant visions of playing Candyland as a child. Anyhow, I'm wolfing down Immodium and toughing it out. Honestly, it's pretty manageable, albeit not much fun.
But enough about such unpleasantries, and on to my fellow man. As I write this, the US has just emerged victorious from a skirmish with Somali pirates, who seized a freighter full of medical and famine aid supplies and held the US captain hostage for a couple of days until he was freed by a team of Navy SEALS. It's fairly big news.
And it did not escape the watchful eye of my nurse in the hospital -- a haggard woman with a fondness for copious amounts of southern cooking and the unmistakable steely-eyed glare of a carnival worker. As she was methodically swabbing my lumens with alcohol after taking blood yesterday (counting under her breath as she cleaned) she gave me her thoughts on US policy. "I tell ya what what oughta do with them pirates." There was a pregnant pause, full of anticipation, as she looked at me with a lazy eye. "BLODEMUP." A one-word policy statement, worthy of Von Clausewitz.
I feel halfway decent this morning...got a fairly good night's sleep so other than general exhaustion, so far, so good. Be well, everybody.
Today, however, is. I'm overdue for a bit of local color.
First, my physical state. Not bad, all things considered. I'm on good anti-nausea meds. I don't have the mouth sores yet (and I am rinsing religiously with that awful Biotene stuff that supposedly keeps my mouth full of good bacteria). I got a Neupogen (growth factor) shot yesterday, which they gave me in the sub-cutaneous fat of my arm which was a bit less painful than the belly, and this is going to create flu-like effects (huzzah!) plus bone pain (double huzzah!) as my poor mangled marrow is jostled to make white cells. So be it.
That leaves me with one remaining condition. And here, I am reminded of a statistical observation that came to light when I was in high school. It seems they compared SAT scores among children who regularly watched M*A*S*H versus those who regularly watched The Dukes of Hazzard, and there was something like a 200 point differential. Correlation or causality, who can say, but either way, I was a M*A*S*H kid.
Now there are a number of ways I can go with this...considering I am in the physical equivalent of Hazzard County as I type this. But where I'm going is, sadly, back to the GI tract. I remember the butt of almost every joke in M*A*S*H was either "Frank Burns" or "dysentery." At 14, I'm sure I had no idea what dysentery was, but they sure used it a lot. It was their go-to line. Like Carrottop pulling a rubber chicken out of the crate, like Don Rickles calling somebody "hockeypuck," Larry Gelbart and the M*A*S*H writers went straight to the dysentery gag.
And so here I am. The one impact of chemo that I can't avoid is this horrible persistent diarrhea. The awful constipation that hospitalized me after induction is but a happy memory...like distant visions of playing Candyland as a child. Anyhow, I'm wolfing down Immodium and toughing it out. Honestly, it's pretty manageable, albeit not much fun.
But enough about such unpleasantries, and on to my fellow man. As I write this, the US has just emerged victorious from a skirmish with Somali pirates, who seized a freighter full of medical and famine aid supplies and held the US captain hostage for a couple of days until he was freed by a team of Navy SEALS. It's fairly big news.
And it did not escape the watchful eye of my nurse in the hospital -- a haggard woman with a fondness for copious amounts of southern cooking and the unmistakable steely-eyed glare of a carnival worker. As she was methodically swabbing my lumens with alcohol after taking blood yesterday (counting under her breath as she cleaned) she gave me her thoughts on US policy. "I tell ya what what oughta do with them pirates." There was a pregnant pause, full of anticipation, as she looked at me with a lazy eye. "BLODEMUP." A one-word policy statement, worthy of Von Clausewitz.
I feel halfway decent this morning...got a fairly good night's sleep so other than general exhaustion, so far, so good. Be well, everybody.
Sunday, April 12, 2009
Day +3 / Happy Easter!
Yesterday was a non-event, marked by exhaustion and depleting white cells (about 1.3...not quite neutropenic). We waited over two hours for labs but other than tedium, things were okay.
Today is more of the same...total exhaustion. The weather is horribly gloomy here...black skies, thunderstorms...hardly Easter-like. I'm sure I am now neutropenic and we'll head to the hospital shortly for the daily blood-letting and whatever alchemical remedies they want to apply to me (my money is on more potassium and maybe some magnesium).
Cabin fever is becoming a concern, but otherwise hanging in. We miss the kids today even more than usual. But each day is closer to the end. The back pain is gone, so I know the tumor activity in my spine is reduced or eliminated. I'm eager to see my IgG and M-spike in a couple of weeks...
Anyhow, more news as it merits. Thanks again for the encouragement, all!
Today is more of the same...total exhaustion. The weather is horribly gloomy here...black skies, thunderstorms...hardly Easter-like. I'm sure I am now neutropenic and we'll head to the hospital shortly for the daily blood-letting and whatever alchemical remedies they want to apply to me (my money is on more potassium and maybe some magnesium).
Cabin fever is becoming a concern, but otherwise hanging in. We miss the kids today even more than usual. But each day is closer to the end. The back pain is gone, so I know the tumor activity in my spine is reduced or eliminated. I'm eager to see my IgG and M-spike in a couple of weeks...
Anyhow, more news as it merits. Thanks again for the encouragement, all!
Friday, April 10, 2009
Day +1
Exhausted, so this will be short.
White counts dropped from around 6.7 to around 2.8 today, expect neutropenia to set in tomorrow. Platelets falling as expected, too. Low on Potassium so they gave me two balloons worth of that. Starting Flagile to ward off some kind of GI thing that's going around. Gave us an antibiotic balloon to use in case I develop a fever.
Very, very tired. Just going to try to ride out the next week and hopefully I won't contract anything.
White counts dropped from around 6.7 to around 2.8 today, expect neutropenia to set in tomorrow. Platelets falling as expected, too. Low on Potassium so they gave me two balloons worth of that. Starting Flagile to ward off some kind of GI thing that's going around. Gave us an antibiotic balloon to use in case I develop a fever.
Very, very tired. Just going to try to ride out the next week and hopefully I won't contract anything.
Thursday, April 9, 2009
Day 0 - Transplant #1 finished!
Well, it was almost a non-event. We went into the seventh floor, they ran labs, and pre-medicated me with Kytril and Emend (for nausea) and hydrocortisone and benadryl (to ensure I wouldn't get "oogy" from the transplant). Then lots of saline. About an hour after I got there, they brought one of my eight little teensy bags of pink stem cells that I'd harvested a few weeks ago. It took 15 minutes to administer, during which time I tasted rotten moldy over-sweet butter so I sucked on a piece of hard candy to tolerate that. Blecccch. Otherwise, no side-effects!
Other than tiredeness, that is. I can feel the chemo coma setting in. They monitored me for another three hours post transplant, checking blood pressure, temp and other vitals. A 4PM, I was released, and we grabbed some Mexican food at our new favorite hangout here (reliable high-quality Mexican in Little Rock, of all places!). Now we're back at the apartment and I'm going to veg out on the couch.
Now we basically wait for the stem cells to rebuild the immune system. The nurse said this should take 7-10 days, and with luck I'll only be neutropenic for four or five. Let's hope it goes that smoothly. I don't want any sickness or anything to put me back in the hospital! The anti-fungal medicine they have put me on is causing my liver numbers to act up so they are taking me off it (Fluconazole) for 3-4 days so they can settle down. They are worried about a potential fungal infection called Thrush (I'm afraid to look it up...sounds nasty) and that's why they prescribe the anti-fungal...but we'll have to see what happens.
Otherwise, spirits are high. I'm reminded that 80% of the country would consider my treatment finished (after recuperation)...yet for here, this protocol which will cure me, is only half-done. Still, the cancer will be dead and gone when I'm finished. I'm predicting I will not be in complete remission after this transplant, but I suspect very good partial remission will be achieved. This is based on nothing other than the high protein numbers that persisted after induction. But I'm very confident that after the second transplant, if not the first one, I'll be cancer-free.
Onward and upward! And downward and sleepward...
Other than tiredeness, that is. I can feel the chemo coma setting in. They monitored me for another three hours post transplant, checking blood pressure, temp and other vitals. A 4PM, I was released, and we grabbed some Mexican food at our new favorite hangout here (reliable high-quality Mexican in Little Rock, of all places!). Now we're back at the apartment and I'm going to veg out on the couch.
Now we basically wait for the stem cells to rebuild the immune system. The nurse said this should take 7-10 days, and with luck I'll only be neutropenic for four or five. Let's hope it goes that smoothly. I don't want any sickness or anything to put me back in the hospital! The anti-fungal medicine they have put me on is causing my liver numbers to act up so they are taking me off it (Fluconazole) for 3-4 days so they can settle down. They are worried about a potential fungal infection called Thrush (I'm afraid to look it up...sounds nasty) and that's why they prescribe the anti-fungal...but we'll have to see what happens.
Otherwise, spirits are high. I'm reminded that 80% of the country would consider my treatment finished (after recuperation)...yet for here, this protocol which will cure me, is only half-done. Still, the cancer will be dead and gone when I'm finished. I'm predicting I will not be in complete remission after this transplant, but I suspect very good partial remission will be achieved. This is based on nothing other than the high protein numbers that persisted after induction. But I'm very confident that after the second transplant, if not the first one, I'll be cancer-free.
Onward and upward! And downward and sleepward...
Wednesday, April 8, 2009
Day -1
That's what they refer to the day before transplant as. I'm not sure if tomorrow is Day 0 or Day 1, but today was definitely Day -1.
Day-1 consisted of the last of my four days of Melphalan / mustard gas / whathaveyou. My white counts are starting to go haywire, crested and now beginning to ebb (though still normal for a couple more days, is my guess and that of the nurses with whom I speak). I also got a five-hour "balloon" of potassium as the chemo is wreaking havoc on that. The Dex is making me retain fluid which is causing weight gain and momentarily made me concerned about my kidneys, but all the tests show the kidneys are working fine so it's just an issue of the steroid keeping me ballooned up.
I tolerated the Melphalan pretty well and sucked on ice chips for 20+ minutes before administration, the 20 minutes of administration, and 20+ minutes after administration to ward off Mucositis. I'm also rinsing my mouth fairly religiously with this yucky-tasting mouthwash called Biotene that kills germs. These two prophylactic measures are the best they know to avoid the mouth sores, which are supposedly awful. So I'm sticking with them. For what it's worth, the APN (head nurse in charge of my case on the 7th floor) told me that Mucositis is associated with poor kidney function and since my kidneys are rockin' and rollin' with the beat, I should hopefully fare well. We shall see.
Also today, I got another push of Velcade (take THAT Myeloma!) and another shot of Lovinox in the belly -- the last of these for this cycle. I choked down my last four thalidomide pills this evening, too. No more poison in my body for another six weeks or so! Let's hope this batch did its dirty work.
Tomorrow is a climactic day -- and yet the procedure is very anticlimactic. I'll get some of my stem cells put back in me so that they can help rebuild the bone marrow that the chemo is right now destroying. Then I just need to settle into the feeling of utter exhaustion for two weeks, and hope I don't get sick. If I can stay out of the hospital, this should go much more smoothly than last time.
In the ongoing drama of my GI tract, I am treading the delicate line with grace right now. Now that I'm off the Thalidomide and Dex, hopefully I will be passing out of the danger zone for ER-level constipation. It gives me no joy to write of these topics, but I gotta keep the humor up somehow.
Before signing off, I want to thank some friends who came to visit and helped take care of me so Jill could see the kids. With apologies, these names are too important for initials: Paul Bridwell, Graeme Johnson and Tom Pluta. You are wonderful people and I very much appreciate your visit, kindness and sacrifice. I'm blessed with wonderful friends.
Okay...I'm off to bed...twelve hours from now I have a date with some of my blood! :)
Nighty night.
Day-1 consisted of the last of my four days of Melphalan / mustard gas / whathaveyou. My white counts are starting to go haywire, crested and now beginning to ebb (though still normal for a couple more days, is my guess and that of the nurses with whom I speak). I also got a five-hour "balloon" of potassium as the chemo is wreaking havoc on that. The Dex is making me retain fluid which is causing weight gain and momentarily made me concerned about my kidneys, but all the tests show the kidneys are working fine so it's just an issue of the steroid keeping me ballooned up.
I tolerated the Melphalan pretty well and sucked on ice chips for 20+ minutes before administration, the 20 minutes of administration, and 20+ minutes after administration to ward off Mucositis. I'm also rinsing my mouth fairly religiously with this yucky-tasting mouthwash called Biotene that kills germs. These two prophylactic measures are the best they know to avoid the mouth sores, which are supposedly awful. So I'm sticking with them. For what it's worth, the APN (head nurse in charge of my case on the 7th floor) told me that Mucositis is associated with poor kidney function and since my kidneys are rockin' and rollin' with the beat, I should hopefully fare well. We shall see.
Also today, I got another push of Velcade (take THAT Myeloma!) and another shot of Lovinox in the belly -- the last of these for this cycle. I choked down my last four thalidomide pills this evening, too. No more poison in my body for another six weeks or so! Let's hope this batch did its dirty work.
Tomorrow is a climactic day -- and yet the procedure is very anticlimactic. I'll get some of my stem cells put back in me so that they can help rebuild the bone marrow that the chemo is right now destroying. Then I just need to settle into the feeling of utter exhaustion for two weeks, and hope I don't get sick. If I can stay out of the hospital, this should go much more smoothly than last time.
In the ongoing drama of my GI tract, I am treading the delicate line with grace right now. Now that I'm off the Thalidomide and Dex, hopefully I will be passing out of the danger zone for ER-level constipation. It gives me no joy to write of these topics, but I gotta keep the humor up somehow.
Before signing off, I want to thank some friends who came to visit and helped take care of me so Jill could see the kids. With apologies, these names are too important for initials: Paul Bridwell, Graeme Johnson and Tom Pluta. You are wonderful people and I very much appreciate your visit, kindness and sacrifice. I'm blessed with wonderful friends.
Okay...I'm off to bed...twelve hours from now I have a date with some of my blood! :)
Nighty night.
Tuesday, April 7, 2009
Tuesday on floor 7...and sympathy for the Kurds...
Yesterday my friend Tom from business school arrived so it was the three amigos for most of the day, which was a lot of fun and continued to give me a sense of normalcy. Graeme has returned to Montreal, and Tom will be here tonight and tomorrow night when Jill returns, just in time for my transplant tomorrow.
In yesterday's session, they had to draw blood from my arms and had a hard time finding working veins (I understand this is a problem after chemo) so after the third try, I was about ready to tell them to just use the central line. That started the blood flowing. :) They evidently run special tests on Mondays which are corrupted by the presence of heparin (an anti-clotting agent that they inject into the line to ensure it works) so they have to take blood peripherally. Lovely.
Anyhow, things went fairly normally yesterday although the chemo is having an impact: white counts are spiking (which happen right before the collapse into neutropenia) and my uric acid levels and calcium rose, the former to outside the normal range. This is a function of the tumors being broken down, which is a good thing. But I still had to have an extra bag of saline attached, which added about 45 minutes to my time here. More of a nuisance was that despite the Kytril and Emend anti-nausea medicines, I still feel a little nauseous afterwards. I popped a Ragalin and that helped do the trick, and I was able to have a nice steak dinner with my friends.
The Ambien is no match for the Dexamtehasone. I lay awake in bed until 5:30 and then get 3 or 4 hours of sleep. Not satisfactory. I'm going to try tonight without the Ambien and see if it makes a difference. So far in the great gastrointestinal wars, regularity is winning out over the Thalidomide, but some ground is being given. I'll be watching for the impact of the Melphalan, which will kick in shortly, I'm sure.
Speaking of which, I'm about to receive my third of four infusions, and the nurse today informed me that Melphalan is mustard gas, essentially, in liquid form. Lovely. Bring it on -- the cancer's gonna die, die die!
In yesterday's session, they had to draw blood from my arms and had a hard time finding working veins (I understand this is a problem after chemo) so after the third try, I was about ready to tell them to just use the central line. That started the blood flowing. :) They evidently run special tests on Mondays which are corrupted by the presence of heparin (an anti-clotting agent that they inject into the line to ensure it works) so they have to take blood peripherally. Lovely.
Anyhow, things went fairly normally yesterday although the chemo is having an impact: white counts are spiking (which happen right before the collapse into neutropenia) and my uric acid levels and calcium rose, the former to outside the normal range. This is a function of the tumors being broken down, which is a good thing. But I still had to have an extra bag of saline attached, which added about 45 minutes to my time here. More of a nuisance was that despite the Kytril and Emend anti-nausea medicines, I still feel a little nauseous afterwards. I popped a Ragalin and that helped do the trick, and I was able to have a nice steak dinner with my friends.
The Ambien is no match for the Dexamtehasone. I lay awake in bed until 5:30 and then get 3 or 4 hours of sleep. Not satisfactory. I'm going to try tonight without the Ambien and see if it makes a difference. So far in the great gastrointestinal wars, regularity is winning out over the Thalidomide, but some ground is being given. I'll be watching for the impact of the Melphalan, which will kick in shortly, I'm sure.
Speaking of which, I'm about to receive my third of four infusions, and the nurse today informed me that Melphalan is mustard gas, essentially, in liquid form. Lovely. Bring it on -- the cancer's gonna die, die die!
Sunday, April 5, 2009
So far, so good!!
I am pleased to report that so far, me and Mr. Melphalan are getting along just fine.
I went to the seventh floor, checked into a semi-private room (fortunately nobody else showed) and sat in a recliner. They drew my bloodwork, and informed me they would not be proceeding if my CRP exceeded 10. I would be very sad to be all dressed up (having taken my Dex this morning) with nowhere to go, so I sat, and waited for results of my just-drawn blood to come back, while saline dripped into my arm and Paul and I watched Vicky Christina Barcelona (a nice movie, for what it's worth).
After about forty five minutes, my labs came back and my CRP was 7.0 -- right in the normal range. Green light for poison! I was given Kytril and something else (begins with an E...I'll report) as preventatives for nausea, and I was instructed by the nurse to suck on ice chips, which is believed to help prevent the painful mouth sores which are one of the most common side effects of Melphalan. So I got three big cups of crushed ice and commenced to eat this for 20 minutes leading up to the infusion, the 20 minutes of the infusion, and 30 minutes afterwards.
The infusion itself was no big deal. Melphalan can only exist in a liquid state for an hour, so they don't prepare the agent until they are ready to go. Once they prepared it, they brought in a little plastic bag, confirmed my identity, and started the drip. I felt fine, and still do. My cancer, on the other hand, just took a big kick in the face. I also got an IV push of Velcade, and a fairly painful shot of Lovinox (a preventative for the blood clotting that Dex and Thalidomide can cause) in the belly.
We were there about three hours, maybe a little less. I left feeling fine. In fact, four hours later, my back hurts less than it has in quite sometime. A big one-two punch to the face of the cancer. I have been rinsing my mouth with a special mouthwash that is supposed to help ward off the mouth sores, but otherwise, I feel pretty darn good. I am sure this will give way to exhaustion as neutropenia sets in...but so long as I can avoid penumonia or an opportunistic infection, I am optimistic that I will weather this current batch of chemo.
My cancer, on the other hand, is going to be reeling. There is a marked decrease in back pain, which I attribute to the Myeloma not knowing what hit it.
I'm going to grab a dinner out with my friend Graeme while my stamina allows. Meanwhile, thanks again for your support!
I went to the seventh floor, checked into a semi-private room (fortunately nobody else showed) and sat in a recliner. They drew my bloodwork, and informed me they would not be proceeding if my CRP exceeded 10. I would be very sad to be all dressed up (having taken my Dex this morning) with nowhere to go, so I sat, and waited for results of my just-drawn blood to come back, while saline dripped into my arm and Paul and I watched Vicky Christina Barcelona (a nice movie, for what it's worth).
After about forty five minutes, my labs came back and my CRP was 7.0 -- right in the normal range. Green light for poison! I was given Kytril and something else (begins with an E...I'll report) as preventatives for nausea, and I was instructed by the nurse to suck on ice chips, which is believed to help prevent the painful mouth sores which are one of the most common side effects of Melphalan. So I got three big cups of crushed ice and commenced to eat this for 20 minutes leading up to the infusion, the 20 minutes of the infusion, and 30 minutes afterwards.
The infusion itself was no big deal. Melphalan can only exist in a liquid state for an hour, so they don't prepare the agent until they are ready to go. Once they prepared it, they brought in a little plastic bag, confirmed my identity, and started the drip. I felt fine, and still do. My cancer, on the other hand, just took a big kick in the face. I also got an IV push of Velcade, and a fairly painful shot of Lovinox (a preventative for the blood clotting that Dex and Thalidomide can cause) in the belly.
We were there about three hours, maybe a little less. I left feeling fine. In fact, four hours later, my back hurts less than it has in quite sometime. A big one-two punch to the face of the cancer. I have been rinsing my mouth with a special mouthwash that is supposed to help ward off the mouth sores, but otherwise, I feel pretty darn good. I am sure this will give way to exhaustion as neutropenia sets in...but so long as I can avoid penumonia or an opportunistic infection, I am optimistic that I will weather this current batch of chemo.
My cancer, on the other hand, is going to be reeling. There is a marked decrease in back pain, which I attribute to the Myeloma not knowing what hit it.
I'm going to grab a dinner out with my friend Graeme while my stamina allows. Meanwhile, thanks again for your support!
Ready to rock
The last couple of days have been really nice -- almost normal, actually. I got a couple of pints of blood which gave me a bit more energy, the cough is on its last legs (only really coughed about five times yesterday and none yet today), and I've had a great time relaxing and doing mostly nothing with my friend Paul. We've eaten well, went to a pub and watched the MSU / UConn game last night over a few pints of Guinness rather than blood, etc. It almost feels like I don't have cancer...until I notice my port, and my aching back, and my bald head. :)
Today begins the next ass-kicking for the disease. I told my cancer cells last night to enjoy their time while they can because the brutality starts soon, and it will be merciless.
Chemical diet for the next four days, as an example:
AM:
- 10 pills of dexamethasone (4mg each) to kick the cancer in the face
- Acyclovir horse pill to ward off viruses
- Metanex prescription vitamin B pill to provide energy and combat neuropathy
- Protonix to counteract heartburn from chemo
Chemo: antinausea medicine (I hope!) plus 50mg/m2 of Melphalan plus Velcade via IV push -- kicking cancer in face big time
Afternoon:
- another Metanex
- Another Acyclovir
- Huge horse pill of Levaquin (antibiotic that I'm now seeing FDA warning ads on TV for...)
- Fluconazole to ward off fungal infections
Evening:
- 200mg Thalidomide (another kick to the cancer)
- another Protonix for heartburn
- Senna and Docusan, two kinds of "keep ya regular" pills which I will be popping like candy this time out to avoid a repeat of the last disaster
Tomorrow morning I'll add the "keep ya regular" pills in the AM as well, and also Cymbalta for four days which is the anti-depressant that helps with neuropathy.
PLUS I'll get injections of Lovanox/Lovamax/Lovawhatever in the stomach to ward off the deep vein thrombosis (blood clots) that the thalidomide brings on.
I am ready. I'll write more after the treatment and let you know all about it, dear readers. Have a good one!
Today begins the next ass-kicking for the disease. I told my cancer cells last night to enjoy their time while they can because the brutality starts soon, and it will be merciless.
Chemical diet for the next four days, as an example:
AM:
- 10 pills of dexamethasone (4mg each) to kick the cancer in the face
- Acyclovir horse pill to ward off viruses
- Metanex prescription vitamin B pill to provide energy and combat neuropathy
- Protonix to counteract heartburn from chemo
Chemo: antinausea medicine (I hope!) plus 50mg/m2 of Melphalan plus Velcade via IV push -- kicking cancer in face big time
Afternoon:
- another Metanex
- Another Acyclovir
- Huge horse pill of Levaquin (antibiotic that I'm now seeing FDA warning ads on TV for...)
- Fluconazole to ward off fungal infections
Evening:
- 200mg Thalidomide (another kick to the cancer)
- another Protonix for heartburn
- Senna and Docusan, two kinds of "keep ya regular" pills which I will be popping like candy this time out to avoid a repeat of the last disaster
Tomorrow morning I'll add the "keep ya regular" pills in the AM as well, and also Cymbalta for four days which is the anti-depressant that helps with neuropathy.
PLUS I'll get injections of Lovanox/Lovamax/Lovawhatever in the stomach to ward off the deep vein thrombosis (blood clots) that the thalidomide brings on.
I am ready. I'll write more after the treatment and let you know all about it, dear readers. Have a good one!
Thursday, April 2, 2009
The transplant plan...
First, thanks for the words of encouragement on the heels of my previous post, which I admit was rather moribund. But honestly, you should see that place.
We met with BB yesterday and he was quite optimistic about things. We went through my recent series of tests, confirming again that all the focal lesions are gone (although there are a lot of "hot spots" still, including many in my spine which puts to rest, I think, the issue of where the back pain is coming from) and that my IgG is down to around 5600. My marrow, which had been 70%+ plasma cells since diagnosis, is now around 50%, which is certainly a step in the right direction. BB is going to give me a couple of units of blood to help with the exhaustion.
Jill left today for a week to spend some quality time with the kids, which is overdue for all parties. My dear friend Paul is going to stay with me for a few days, followed by some friends from business school, whom I look forward to seeing. I continue to be humbled by the kindness and generosity of my friends and the difference that they make. Thank you.
The traditional transplant involves 1-2 days of very high dose Melphalan, a type of chemo that's been used for decades. Typically this dose will be 200 mg/m2, as noted previously. In the BB "lite" protocol, I will receive 50mg/m2 per day for four days -- the same total amount but fractionated to reduce toxicity: i.e. hopefully there will be no nausea of vomiting (BB seemed pretty confident of this). On the fifth day, I'll receive a bag of my previously-harvested stem cells. The Melphalan will destroy the old bone marrow and blood cells; the stem cells will rebuild it. While I have no immune system I'll be pumped full of blood, platelets and God knows what to get white counts up, and then presto: hopefully remission. Then I'll have a couple of weeks off to rinse, lather and repeat.
This will start on Sunday. In the meantime, I continue for daily labs and try to get rid of the last of my cough, which is still rattling around but is 99% gone. More news as it becomes available!
We met with BB yesterday and he was quite optimistic about things. We went through my recent series of tests, confirming again that all the focal lesions are gone (although there are a lot of "hot spots" still, including many in my spine which puts to rest, I think, the issue of where the back pain is coming from) and that my IgG is down to around 5600. My marrow, which had been 70%+ plasma cells since diagnosis, is now around 50%, which is certainly a step in the right direction. BB is going to give me a couple of units of blood to help with the exhaustion.
Jill left today for a week to spend some quality time with the kids, which is overdue for all parties. My dear friend Paul is going to stay with me for a few days, followed by some friends from business school, whom I look forward to seeing. I continue to be humbled by the kindness and generosity of my friends and the difference that they make. Thank you.
The traditional transplant involves 1-2 days of very high dose Melphalan, a type of chemo that's been used for decades. Typically this dose will be 200 mg/m2, as noted previously. In the BB "lite" protocol, I will receive 50mg/m2 per day for four days -- the same total amount but fractionated to reduce toxicity: i.e. hopefully there will be no nausea of vomiting (BB seemed pretty confident of this). On the fifth day, I'll receive a bag of my previously-harvested stem cells. The Melphalan will destroy the old bone marrow and blood cells; the stem cells will rebuild it. While I have no immune system I'll be pumped full of blood, platelets and God knows what to get white counts up, and then presto: hopefully remission. Then I'll have a couple of weeks off to rinse, lather and repeat.
This will start on Sunday. In the meantime, I continue for daily labs and try to get rid of the last of my cough, which is still rattling around but is 99% gone. More news as it becomes available!
Tuesday, March 31, 2009
A creepy glimpse ahead...
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.
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.
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.
Saturday, February 28, 2009
Livin' it up at the Hotel Chemotherapy...
It's been a few days...I've been in a "chemo fog" for some time. The side effects are fairly manageable so far -- I had a pretty nasty case of the hiccups, of all things, but they prescribed a medicine for that. I have a bit of heartburn, also manageable by medicine. The rest is just being exhausted most of the time -- I've experienced, thus far, none of the "up and at 'em" that the dexamethasone is supposed to infuse --and thus none of the "roid rage" I've been concerned about. The exhausting does make it hard to focus, but I can live with it.
Oh, and then there's the pain. I think it must be associated with the heavy load on my kidneys but the lower back feels okay now, but directly above it, in both and back and the front, it's very painful to lie down, and painful to get up. I've been taking a little Oxycontin for it and that seems to help -- a LITTLE. The nurse says that it will be difficult to gauge pain for the next week or so because the pain from the disease will go down, but the pain from the meds will be present and when I start getting the twice-a-day growth shots to increase my blood counts, that is supposed to cause pain as well. Oh well. It will subside when it's ready.
Speaking of blood counts, I am happy to say that the elevated kidney activity that almost landed me in the hospital a few days ago is, in fact, related to the effectiveness of the treatment. My IgG (parts of immunoglobulin G per dL of blood) has falled from somewhere around 14,000 upon my arrival here to 8300. This is where it was at the beginning of January, and this is only after 1.5 full days on therapy. So far, so good.
I am on the bag for one more day, so hopefully by the time that is done, this number will be much lower already.
I'm noticing a teensy bit of neuropathy, most prominently in my left foot. I took the cymbalta yesterday and today but I will get the prescription for the B6 and folate on Monday and that should help as well.
Running out of energy for this blog. Thanks for all the email, phone calls and blog comments. I appreciate every one!
Oh, and then there's the pain. I think it must be associated with the heavy load on my kidneys but the lower back feels okay now, but directly above it, in both and back and the front, it's very painful to lie down, and painful to get up. I've been taking a little Oxycontin for it and that seems to help -- a LITTLE. The nurse says that it will be difficult to gauge pain for the next week or so because the pain from the disease will go down, but the pain from the meds will be present and when I start getting the twice-a-day growth shots to increase my blood counts, that is supposed to cause pain as well. Oh well. It will subside when it's ready.
Speaking of blood counts, I am happy to say that the elevated kidney activity that almost landed me in the hospital a few days ago is, in fact, related to the effectiveness of the treatment. My IgG (parts of immunoglobulin G per dL of blood) has falled from somewhere around 14,000 upon my arrival here to 8300. This is where it was at the beginning of January, and this is only after 1.5 full days on therapy. So far, so good.
I am on the bag for one more day, so hopefully by the time that is done, this number will be much lower already.
I'm noticing a teensy bit of neuropathy, most prominently in my left foot. I took the cymbalta yesterday and today but I will get the prescription for the B6 and folate on Monday and that should help as well.
Running out of energy for this blog. Thanks for all the email, phone calls and blog comments. I appreciate every one!
Subscribe to:
Posts (Atom)
