...and Ann Wilson was singing up a storm. [ba-dum dum]
There is a weekend music, food and...err....possum? belt buckle? moonshine?...festival this week. It's on the river here. A festival on the river. Care to guess the name?
So we bought tickets to the Riverfest yesterday because there were some interesting nostalgia bands playing (the B52s, Heart, etc.) and tickets were $12.50 for THE WEEKEND. Last night we saw three songs of the B52s -- enough to see that the short woman had gained about 150 pounds but was still gamely capering around, while the tall woman was unable to move. Only the weird Fred guy was his old (and I mean old) self, prancing around and blowing on a slide whistle on one song. That was about all I could take.
I let Jill drag me to the other big stage near the Clinton library to see Willie Nelson. Willie, unlike the B52s, looked exactly like I remember him in the 1980s. Which is to say, impossibly old, frail, and smelly. But the audience was very much into it. I felt like calling out for him to perform a little known Manowar* song (like Bridge of Death, or Blood of My Enemies) but there are only two people reading this blog that will chuckle at the brilliant irony of that, and there certainly would have been nobody at the Willie Nelson show that would have understood or laughed. Blood of My Enemies could have been construed as a country song about the ay-rabs, though. In fact, I can see it now...Nick screams "play Blood of My Enemies" and some huge redneck in bib overalls turning around and saying "you dumbass, that's a Toby Keith song!" or something.
Anyhow, tonight Heart performed and I have to admit, they were awesome for the four songs we saw after the Lakers game ended (go Lakers!). They did a very good cover of The Who's Love Reign O'er Me (one of my favorite songs). Although from the looks of Ann Wilson, deep dish pizza has been reigning o'er her for some time now. Still, her voice was amazing.
I looked around and realized this is probably the last outing of this sort I'll be going on for a month -- I could almost see a thick halo of germs swarming around every drunk, unclean and/or smoking person there...which is to say about 98% of the people including security. They'd had about 12 hours to get to whatever state they were in by 11PM, so good for them, but it's no place for somebody whose immune system is about to fail. I went home and practically took a bath in the antiseptic handwash I have.
So...like a movie with too much exposition before the opening credits, here at last is the medical meat of this blog entry.
I took my 10 little dexamethasone pills this morning, and went back to the 7th floor at 9AM to run the gauntlet again. Labs were drawn, and some weird things were observed. White blood cells were low -- 2.7 -- but I was told this is because I started the Levaquin. Phosphorus, of all things, was low, and I was given a list of foods to eat. Uric Acid is a bit high, not sure what that is from. CRP needed to be below 10 to proceed with the Melphalan and it was 9.8...which is about what I expected given the cold that is still lingering but as I write this almost done. Red blood counts are holding steading -- still slightly anemic but a lot better than before.
The Melphalan went down without a hitch. I got my Kytril and Emend for nausea, which as of the time of this writing are fine. I did NOT get Zofran / Ragalin this time...and reading up on Zofran there are some side effects that can elevate liver tests, so I wonder if that's what did it? We shall see. There seem to be a lot of medicines that are doing that. So I will stick to my "if I don't need it, I won't take it" program. I got Zofran in the hospital and my liver numbers were fine...oh well, we'll figure it all out.
I also got a shot of Lovanox in my belly again, which was tolerable but not something I want to repeat. Sadly I need to do so 3-4 more times. So far, I'm sluggish but otherwise feel good. Three more days of this, and I'll have hopefully dealt the death blow to the cancer.
Pill rundown:
Levaquin (antibiotic, 1/day)
Acyclovir (antiviral, 2/day)
Tamiflu (antiflu, Swine and other, 1/day)
MetaNX (buncha prescription-form B vitamins as a prophylactic for neuropathy, 2/day)
Thalidomide (poison, 2 100-mg pills each night)
Protonix/Pantoprozole (ameliorates heartburn associated with all this other stuff plus the chemo)
Kytril (antinausea, 1/day)
Emend (antinausea, 1/day)
Atavan (required to combat dex to let me sleep, 1/day)
Senna (as needed to make sure I don't get the abdominal cramping problem, 1/day based on last transplant experience)
Fluconazole (antifungal, 1/day, they put me back on it)
Amazing there's room for food with all that, but there still is, at least until the chemo clobbers my appetite (which would be fine as I'm back up to 177 pounds which is about 12 more than I want to be carrying around). So since we needed to eat, I went to do another thing I won't be able to do for the next two weeks -- sushi! We found a very, very good place called Igibon. Shockingly fresh fish, and about half the price of what a similar place in LA would be. Something to like about Little Rock!
Well, it was a full day, given that I got the liquid mustard gas this morning. I expect the next few days will be progressively less full, until about a week from now when I will probably crash outright -- but I'm hoping the elevated red counts will enable me to have a little energy even then.
That's all the news that's fit to print and then some. Good night all!
-----
*Manowar is a very obscure heavy metal band that dresses up like vikings, who take themselves wayyyy too seriously, and who had a number of decent albums in the mid 1980s but who are now widely considered a joke in the US even though they continue to be worshipped in Europe. Spinal Tap has nothing on these guys -- one of them accidentally struck the singer with a not-so-fake sword on stage in the 1980s and they had to stop the show to get the guy to a hospital. It may not be a drummer exploding spontaneously like Tap...but then it really happened.
Saturday, May 23, 2009
Friday, May 22, 2009
Well, I *thought* that was going to be my last post of the day...
...but I have to give a "shout out" to Dr. SF, who would have been my primary stem cell transplant guy had I stayed in LA for this, and who will be the person who is in charge of my maintenance therapy for the next three years once I finish up here.
Jill was just watching the documentary about Farrah Fawcett, who is in the 11th hour of her fight against several forms of cancer, and evidently she is pursuing a radical therapy for one of her cancers involving a stem cell transplant, and SF was shown consulting her on whatever her next course of action was.
Pretty cool!
Jill was just watching the documentary about Farrah Fawcett, who is in the 11th hour of her fight against several forms of cancer, and evidently she is pursuing a radical therapy for one of her cancers involving a stem cell transplant, and SF was shown consulting her on whatever her next course of action was.
Pretty cool!
A final brief story before round #3 of Chemo...
This technically took place yesterday, but it deserves its own entry.
One of the nurses in the clinic -- unprompted (as though one could prompt for this type of statement) -- told us that her father was a truck-driving nudist who had a tattoo of a caterpillar on his penis.
Good night.
One of the nurses in the clinic -- unprompted (as though one could prompt for this type of statement) -- told us that her father was a truck-driving nudist who had a tattoo of a caterpillar on his penis.
Good night.
Plasma cells and bone marrow on the day before the next transplant begins...
We went to the clinic yesterday to review all my tests and to discuss timing of beginning transplant #2, which I wanted to begin as soon as possible while at the same time being mindful of my bad cold, which had almost departed my sinuses but which was still alive and kicking in my chest. I don't want my immune system being wiped out just in time to let a little bronchial cold turn into pneumonia and a hospital visit again.
The PET scan revealed continued tumor activity in my spine, which I am told is gonna be around for a while (possibly as long as a couple of years!) but which will continue to reduce as it has. Two areas of tumor activity -- one in my sixth right rib and one in my left shoulder-blade -- are completely gone. The rest are reduced from where they were. But there is still diffuse involvement in many vertebrae, some of which have small fractures that will not get worse but are still there. The source of my back pain revealed! This should continue to improve as the cancer is beaten down, so I'm not worried about it. And I asked Caleb, BB's physician's assistant, directly if there was any chance the fractures could worsen to the point where I might find myself back in the hospital on Dilaudid waiting for back surgery, which is an experience I'm not terribly eager to repeat. He said it was extremely unlikely for that to happen, so I'm okay. In any event, the PET scan is good.
The MRI scan revealed continued marrow activity in my back and elsewhere but in general was unchanged from before. Again, slightly surprising given how much the cancer has been reduced but it's hard as the dickens to get it out of the bones once it is there -- the bone needs to turn over and the very last cancer cells have to die off before that can begin, etc. There are no new fractures and essentially everything else is stable, so while again, I wish it showed all the cancer was gone, that's not going to happen for some time, evidently, and everything is stable, so we're good with the MRI.
The Echocardiogram and EKG were normal -- I have mild regurgitation from my tricuspid valve in my heart which I don't think was there before but it is well within the parameters of normal, so I can live with it even though I wish it wasn't there. Importantly, my tachycardia has gone down. It was evidently a temporary situation caused by the transplant and was reflecting of my body working overtime to rebuild blood counts, etc. So that's good.
My bloodwork was generally very good. I've got some nutty things going on with my iron (because my marrow is no longer as clogged with plasma cells I can store iron again) which is good for red blood counts. I am *almost* no longer anemic, with Hemoglobin approaching 13 and red blood counts over 4 for the first time I can recall since I started looking at these numbers back in November. Importantly, red blood cells should not fall that much due to chemo, since they have no nucleus and chemo destroys cells with nuclei. This means that with luck, I'll have higher red blood counts than last time, which means I'll be a bit less tired. Good news!
My liver numbers were still screwy. I did have a glass or two of wine some nights while I was back in Los Angeles, but I didn't drink to excess and they shouldn't have caused the spikes that are there. These numbers were very moderate, with the same type of drinking pattern, throughout my treatment (for example, pre-transplant when I was feeling good I would have a glass of wine or two with dinner some nights and there was no elevation in liver numbers). However, at the time of the transplant they spiked and they haven't come down. Now they aren't crazy high, but they are perhaps 150% of normal. And they aren't moving. The most likely culprit was believed to be Fluconazole, which is one of a family of anti-fungal drugs they give people during cancer therapy. However I've been off that for a month now and the numbers haven't returned to normal. Evidently Velcade also causes irritation in the liver, so that, too, could have been responsible since I got two pushes of that for the last transplant, and will be getting two more in very short order. Hmm...
Anyway these numbers are not too high and I was told they are nothing to worry about -- although they are adding a hepatitis screen to my labs for the day.
Now, to the best part, and sorry to bury this so deep in the mix here, but the bone marrow is MUCH improved from the start of my therapy. Plasma cells are supposed to make up 3-4% of one's bone marrow, give or take. As you likely recall, Myeloma is plasma cell cancer and these cancerous little bastards replicate like nobody's business until they crowd all the healthy cells out. At diagnosis, my plasma cells were SEVENTY percent of my bone marrow. This means there's no room to make red blood cells (hence the anemia) and no room to make white blood cells (which is how many MM sufferers die because they are unable to get rid of infections).
After the round of VTD-PACE (induction) my plasma cells were reduced to around 50%, which was progress but they were still much too prevalent in my marrow.
Well, per the core bone marrow sample done on Wednesday, my plasma cells are EIGHT percent overall, and only FIVE percent in the core of the marrow where immature cells are developing. This is terrific news.
Based on this, we discussed the likelihood of complete remission and it seems my expectations were in line -- there's a very high likelihood that I'll be in complete remission after this next transplant, which would be a nice birthday present for me.
Today, I go to the lab for blood work and to drop off a lovely care package -- 24 hours' worth of urine collected in a jug. No, I haven't been taking after Howard Hughes and doing this in my spare time -- it was requested by the lab. I'll also have the lab change my dressing on my central line as it's been sitting there for a week now and it's time to refresh it. And that will do it for the day, other than picking up more dex for my next course of it starting tomorrow.
Assuming my CRP isn't haywire, we are all systems go for high-dose chemo to begin tomorrow morning at 9AM on the seventh floor. It will be as before: four days of Melphalan, dex and thalidomide with Velcade on days 1 and 4. I'll have shots of Lovenox (blood thinner) in the belly for four days to make sure the thalidomide doesn't cause clots / deep vein thrombosis, and then we'll watch my white blood cells drop until they crater, after which I'll get those awful Neupogen shots for six or seven days. But, I've been through this before, and it wasn't so bad. I'll have plenty of Immodium on hand, suck on the ice chips during the Melphalan and rinse with that nasty mouthwash to keep the mouth sores away, and rely on their anti-nausea meds to keep me feeling good. Then we'll ride out the bumps for a couple of weeks and PRESTO, no more cancer.
And then I'll worry about consolidation treatment. :)
This was a long post -- I've got one other one to report from yesterday's session but it deserves its own entry. Thanks for your readership and support!
The PET scan revealed continued tumor activity in my spine, which I am told is gonna be around for a while (possibly as long as a couple of years!) but which will continue to reduce as it has. Two areas of tumor activity -- one in my sixth right rib and one in my left shoulder-blade -- are completely gone. The rest are reduced from where they were. But there is still diffuse involvement in many vertebrae, some of which have small fractures that will not get worse but are still there. The source of my back pain revealed! This should continue to improve as the cancer is beaten down, so I'm not worried about it. And I asked Caleb, BB's physician's assistant, directly if there was any chance the fractures could worsen to the point where I might find myself back in the hospital on Dilaudid waiting for back surgery, which is an experience I'm not terribly eager to repeat. He said it was extremely unlikely for that to happen, so I'm okay. In any event, the PET scan is good.
The MRI scan revealed continued marrow activity in my back and elsewhere but in general was unchanged from before. Again, slightly surprising given how much the cancer has been reduced but it's hard as the dickens to get it out of the bones once it is there -- the bone needs to turn over and the very last cancer cells have to die off before that can begin, etc. There are no new fractures and essentially everything else is stable, so while again, I wish it showed all the cancer was gone, that's not going to happen for some time, evidently, and everything is stable, so we're good with the MRI.
The Echocardiogram and EKG were normal -- I have mild regurgitation from my tricuspid valve in my heart which I don't think was there before but it is well within the parameters of normal, so I can live with it even though I wish it wasn't there. Importantly, my tachycardia has gone down. It was evidently a temporary situation caused by the transplant and was reflecting of my body working overtime to rebuild blood counts, etc. So that's good.
My bloodwork was generally very good. I've got some nutty things going on with my iron (because my marrow is no longer as clogged with plasma cells I can store iron again) which is good for red blood counts. I am *almost* no longer anemic, with Hemoglobin approaching 13 and red blood counts over 4 for the first time I can recall since I started looking at these numbers back in November. Importantly, red blood cells should not fall that much due to chemo, since they have no nucleus and chemo destroys cells with nuclei. This means that with luck, I'll have higher red blood counts than last time, which means I'll be a bit less tired. Good news!
My liver numbers were still screwy. I did have a glass or two of wine some nights while I was back in Los Angeles, but I didn't drink to excess and they shouldn't have caused the spikes that are there. These numbers were very moderate, with the same type of drinking pattern, throughout my treatment (for example, pre-transplant when I was feeling good I would have a glass of wine or two with dinner some nights and there was no elevation in liver numbers). However, at the time of the transplant they spiked and they haven't come down. Now they aren't crazy high, but they are perhaps 150% of normal. And they aren't moving. The most likely culprit was believed to be Fluconazole, which is one of a family of anti-fungal drugs they give people during cancer therapy. However I've been off that for a month now and the numbers haven't returned to normal. Evidently Velcade also causes irritation in the liver, so that, too, could have been responsible since I got two pushes of that for the last transplant, and will be getting two more in very short order. Hmm...
Anyway these numbers are not too high and I was told they are nothing to worry about -- although they are adding a hepatitis screen to my labs for the day.
Now, to the best part, and sorry to bury this so deep in the mix here, but the bone marrow is MUCH improved from the start of my therapy. Plasma cells are supposed to make up 3-4% of one's bone marrow, give or take. As you likely recall, Myeloma is plasma cell cancer and these cancerous little bastards replicate like nobody's business until they crowd all the healthy cells out. At diagnosis, my plasma cells were SEVENTY percent of my bone marrow. This means there's no room to make red blood cells (hence the anemia) and no room to make white blood cells (which is how many MM sufferers die because they are unable to get rid of infections).
After the round of VTD-PACE (induction) my plasma cells were reduced to around 50%, which was progress but they were still much too prevalent in my marrow.
Well, per the core bone marrow sample done on Wednesday, my plasma cells are EIGHT percent overall, and only FIVE percent in the core of the marrow where immature cells are developing. This is terrific news.
Based on this, we discussed the likelihood of complete remission and it seems my expectations were in line -- there's a very high likelihood that I'll be in complete remission after this next transplant, which would be a nice birthday present for me.
Today, I go to the lab for blood work and to drop off a lovely care package -- 24 hours' worth of urine collected in a jug. No, I haven't been taking after Howard Hughes and doing this in my spare time -- it was requested by the lab. I'll also have the lab change my dressing on my central line as it's been sitting there for a week now and it's time to refresh it. And that will do it for the day, other than picking up more dex for my next course of it starting tomorrow.
Assuming my CRP isn't haywire, we are all systems go for high-dose chemo to begin tomorrow morning at 9AM on the seventh floor. It will be as before: four days of Melphalan, dex and thalidomide with Velcade on days 1 and 4. I'll have shots of Lovenox (blood thinner) in the belly for four days to make sure the thalidomide doesn't cause clots / deep vein thrombosis, and then we'll watch my white blood cells drop until they crater, after which I'll get those awful Neupogen shots for six or seven days. But, I've been through this before, and it wasn't so bad. I'll have plenty of Immodium on hand, suck on the ice chips during the Melphalan and rinse with that nasty mouthwash to keep the mouth sores away, and rely on their anti-nausea meds to keep me feeling good. Then we'll ride out the bumps for a couple of weeks and PRESTO, no more cancer.
And then I'll worry about consolidation treatment. :)
This was a long post -- I've got one other one to report from yesterday's session but it deserves its own entry. Thanks for your readership and support!
Thursday, May 21, 2009
Notes from Ground Zero of pop culture
Yes, I do mean Little Rock.
Which normally would not be the ground zero of pop culture, but this year one of the two American Idol finalists is from Conway, Arkansas, which is (I suppose) a suburb of Little Rock. Except (1) there is very little "urb" anywhere around here, and (2) for a city to be a suburb of another city there has to be some relationship of population and proximity, and I think Little Rock, to say nothing of Conway, lacks enough heft in both areas. Here, I was going to add a metaphor about two celestial bodies orbiting each other but being too small to count, but my ability to construct this metaphor is failing me. You get the (overwrought by now) joke.
Anyhow, last night was the final of American Idol. Given the provenance of one of the two finalists, it was being treated like something between game seven of the world series and what I can expect reaction to be if Osama Bin Laden is captured alive and put on trial. There were a number of "watch parties" (as they are called in these parts) and Jill convinced me that we should go to the Peabody Hotel to participate in one. Since Jill and I would be watching the program anyway, and since I will soon be in no shape to go out, I thought this was a good idea.
The Peabody Hotel, long-time readers may recall, is best known for its duck parade. As a refresher, this hotel keeps a few ducks in a pen on the roof, and every day a costumed bellman who looks like he is prepared to meet a foreign dignitary solemnly rolls out a red carpet, takes a glass elevator to the roof, escorts the ducks into the elevator and into the lobby, and keeps guard as they walk towards the lobby fountain. The same bellman escorts them back to the roof after they have done whatever business ducks do in the fountains of hotel lobbies.
The ducks were put away last night, and the lobby was full of chairs and about 300 Arkansans in various stages of obesity. The local radio station was hosting the event, and the evening included such innovative concepts as giving away an extra-large T-shirt to the largest man in the room, and a raffle for a free lunch at a local restaurant called Scobey's (the applause was defeaning) and another raffle for a rudimentary cell phone (the response was as though a Lamborghini had just been given away). I realize I am a jaded jerk from a big city, so I'll cast my cynicism aside for a moment and say that everybody was having a good time and it was neat to see a relatively small town rally behind their standard-bearer on this program.
And then he won, against all odds. I literally thought I was going to go deaf from the 120 decibel roar that filled the room. I have been to many rock concerts in my life, including Deep Purple whom I believe was in the Guinness Book for the loudest concert of all time, but I have never feared for my hearing as I did last evening. People were sobbing, screaming, standing on chairs, hands in the air...there were probably more than a few people speaking in tongues but I couldn't hear them over the din. I wrote "can I please close out my tab?" on my cocktail napkin and showed it to the bartender, who waded through the sound waves and gave me back my credit card. I looked around -- the whole scene was like a cross between the height of Beatlemania and a bad HeeHaw rerun. I was trapped somewhere between V-J day in Times Square and the fall of Saigon. Sheer madness.
And yet...what a remarkable place to be on a night like last night.
Good for the little kid from Conway, Arkansas. And good for the people that root for him. There's probably a lot to be learned from watching simple folks derive a great deal of pleasure from such simple things. Particularly when one is in the process of getting rid of cancer, and re-considering what's important in life.
Next time I feel myself being jaded, I'll do my best to keep that in mind.
Which normally would not be the ground zero of pop culture, but this year one of the two American Idol finalists is from Conway, Arkansas, which is (I suppose) a suburb of Little Rock. Except (1) there is very little "urb" anywhere around here, and (2) for a city to be a suburb of another city there has to be some relationship of population and proximity, and I think Little Rock, to say nothing of Conway, lacks enough heft in both areas. Here, I was going to add a metaphor about two celestial bodies orbiting each other but being too small to count, but my ability to construct this metaphor is failing me. You get the (overwrought by now) joke.
Anyhow, last night was the final of American Idol. Given the provenance of one of the two finalists, it was being treated like something between game seven of the world series and what I can expect reaction to be if Osama Bin Laden is captured alive and put on trial. There were a number of "watch parties" (as they are called in these parts) and Jill convinced me that we should go to the Peabody Hotel to participate in one. Since Jill and I would be watching the program anyway, and since I will soon be in no shape to go out, I thought this was a good idea.
The Peabody Hotel, long-time readers may recall, is best known for its duck parade. As a refresher, this hotel keeps a few ducks in a pen on the roof, and every day a costumed bellman who looks like he is prepared to meet a foreign dignitary solemnly rolls out a red carpet, takes a glass elevator to the roof, escorts the ducks into the elevator and into the lobby, and keeps guard as they walk towards the lobby fountain. The same bellman escorts them back to the roof after they have done whatever business ducks do in the fountains of hotel lobbies.
The ducks were put away last night, and the lobby was full of chairs and about 300 Arkansans in various stages of obesity. The local radio station was hosting the event, and the evening included such innovative concepts as giving away an extra-large T-shirt to the largest man in the room, and a raffle for a free lunch at a local restaurant called Scobey's (the applause was defeaning) and another raffle for a rudimentary cell phone (the response was as though a Lamborghini had just been given away). I realize I am a jaded jerk from a big city, so I'll cast my cynicism aside for a moment and say that everybody was having a good time and it was neat to see a relatively small town rally behind their standard-bearer on this program.
And then he won, against all odds. I literally thought I was going to go deaf from the 120 decibel roar that filled the room. I have been to many rock concerts in my life, including Deep Purple whom I believe was in the Guinness Book for the loudest concert of all time, but I have never feared for my hearing as I did last evening. People were sobbing, screaming, standing on chairs, hands in the air...there were probably more than a few people speaking in tongues but I couldn't hear them over the din. I wrote "can I please close out my tab?" on my cocktail napkin and showed it to the bartender, who waded through the sound waves and gave me back my credit card. I looked around -- the whole scene was like a cross between the height of Beatlemania and a bad HeeHaw rerun. I was trapped somewhere between V-J day in Times Square and the fall of Saigon. Sheer madness.
And yet...what a remarkable place to be on a night like last night.
Good for the little kid from Conway, Arkansas. And good for the people that root for him. There's probably a lot to be learned from watching simple folks derive a great deal of pleasure from such simple things. Particularly when one is in the process of getting rid of cancer, and re-considering what's important in life.
Next time I feel myself being jaded, I'll do my best to keep that in mind.
Tuesday, May 19, 2009
48 hours, from the ridiculous to the sublime to the grueling...
Yesterday started off very early. I was a little anxious about coming back here and diving back into things, to say nothing of bidding farewell to my kids for another month, so I didn't sleep very well on Sunday night. Bleary eyed, we headed to the airport Monday morning for a 6:35 flight.
I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.
Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.
We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.
We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!
Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."
I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.
Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.
This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.
We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.
We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.
Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.
It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.
Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!
I wonder how that flight was...because when we got to the front of the Continental line, they told us that the confirmation numbers we had were cancelled because the ticketing hadn't been finalized. Whether this is the fault of Continental or my assistant who booked the tickets, it caused quite a bit of chaos that morning. Everything was sold out. We had no way to get to Little Rock on Continental, American, or United. We could get there through Atlanta but it would mean arrive around midnight which wasn't particularly desirable seeing as we had to get up a 5 for my PET scan.
Eventually, we got tickets on Southwest...through El Paso and Dallas before arriving at Little Rock at around 7PM. It could have been worse. But still, somewhere there are 200,000 frequent flier miles that I used for two first class tickets on Continental and I would like to have those reinstated in my Amex mileage bank account, please. My assistant will be involved in a steel-cage death match with Continental ticketing upon her return from vacation later this week.
We managed this okay. I'm still nursing my cold so whenever somebody looked like they were going to take the open seat between Jill and me, I simply took out a tissue and started coughing into it. This worked like a charm on the first leg. On the second leg, it was packed so there was no choice. Some poor woman got stuck in the same row as sneezy the angry cancer dwarf. Jill kindly switched to the middle so at least she had a barrier.
We flopped down in the condo here and settled in for the next tour of duty. I'd run out of heparin by this time (we've got plenty at home) but I put some saline into my lines to keep them ready for action. I have limited time before I won't be able to go out in the evenings due to neutropenia and/or exhaustion, so we wanted to try to eat downstairs but I didn't really feel that great because of the cold, so Jill went down to pick up some seared tuna. Had to go heavy on protein and no carbs tonight as the PET scan demands that. The PET scan works, it seems, by starving the body's cells of sugar, and then giving them a bunch of sugar right away in the form of that hideous glow-in-the-dark Tang-type stuff that they foist on you, accompanying by a radioactive shot which, as I compalined once more to the technician, failed STILL to provide me with any of the superpowers that I've been led to believe I should have acquired by now. Shame on you, Stan Lee. Shame on you! Anyhow, the sugar-starved cells gobble up the orange goop, and there are no more voracious consumers of said goop than cancer cells. The PET scan then identifies these "hot spots" and can determine where tumors are forming, and how fast they are progressing. Aretty fascinating diagnostic tool, really!
Jill returned from her seared tuna run and said she saw BB and his wife downstairs. I suggested we go down and say hello, as Jill had only waved to BB's wife from afar. We went down and wound up having dinner and chatting with them for two hours. I learned more great stories (professional and personal ones about BB's crazy past, like trips to Rio in his bachelorhood, etc.) and we laughed like old friends, the four of us. BB and his wife Cathy are very warm people. I spoke directly to BB about articles I'd read...how achieving CR early implies faster regrowth of the tumors, and that Mayo was using this to argue for maintenance therapy, but I thought that had already been proven...long story short, out of that conversation I am more convinced than ever that BB is the right guy for me for this disease. I believe that if I continue at this pace, I will be cured. Full stop. I told BB I had full confidence in him and that it is very rare for me to relinquish control over something like this as I am a type A personality and a bit anal retentive in my work, but that I believed so strongly in this protocol and in him personally that I was able to let go totally. He said "thank you, and you should know that places -- appropriate so -- an even greater burden on me to deliver a cure. I have every expectation that I will."
I have to say, I love this doctor. I feel like he and his wife have taken quite a liking to Jill and me. As I said at the outset, I wanted to seek out the leader in the field, and ensure that he was fully invested in treating me. I believe he is more than fully vested -- I believe he treats all his patients with focus and care, but I also believe we are becoming friends. And if I know him as well as I think I do, he will be personally offended if the cancer doesn't go away exactly as he and his treatment demands and predicts.
Even though there was a nice piece of tuna sitting upstairs, we stayed and had dinner where I ordered another piece of tuna. BB poured me some of his bottle of white wine. I took half a sip and said "oh gosh, I have a PET scan in the morning, I can't drink this, can I?" He smiled and said "it's perfectly okay" and poured more wine in my glass. He did approve of my tuna steak dinner, since one need to load up on protein before the PET as noted above.
This morning, the PET scan was uneventful, albeit VERY early. I'd taken some cold and cough medicine, and popped an Ativan to make sure I could sleep through 45 minutes of sheer boredom. As it was, I slept through half of it, which was fine. I've gotten so used to this test it's really nothing. The Ativan was more helpful in relaxing me so that I didn't sneeze or cough than it was in anything else.
We left there, and got an EKG. That was simple. My tachycardia wasn't acting up as much -- it was showing around 85 bpm, which is much better. Bearing in mind that between the antihistimie on the one hand and the Ativan on the other, there was a battle royale going on for the frequency of my heartbeat. I've decided not to worry too much about it. Soon enough I'll be getting 2X a day checks for heartrate and I won't be on either of those meds when that happens.
We went to the clinic and had some blood drawn -- from my arm no less -- but the guy who did it there was quick, relatively painless, and very good at his job. Then they sent us off for an Echocardiogram. Were we were told there was a two hour wait. So we grabbed a quick bite of lunch, went to the grocery store for a few essentials, and then back to the hospital for the Echo, which was fine.
Then it was off to the MRI. After filling in paperwork, we waited for perhaps 20 minutes before my name was called. The test was about 90 minutes long. Again, I popped an Ativan. Turns out the sleep inducing impact of this drug is somewhat reduced when there is a 110db clanging sound next to your head, unabated for 5 minutes at a time. Nonetheless, it probably kept me from going insane in the tube for 90 minutes. When they focused on my pelvis and legs, I was coughing but kept my lower body still. When they focused on my back, chest, shoulders and head, I had restless leg syndrome (unofficial) but kept my upper body still. I think it worked. It will be interesting to see if the MRI reveals anything about my back pain.
It was a long day, but not a painful one. I didn't have time to call ahead to the outpatient surgery clinic to tell them I am getting a bone marrow biopsy but NOT a gene array tomorrow -- I have a 9AM appointment with one of BB's underlings at which point I will emphasize that, and then I'll emphasize it again in the OR (by refusing to sign the consent form as needed). I'm sure I'll have a story or two to tell about that experience tomorrow.
Now it's off to bed...very early for us...I'll see if I can stay awake long enough to catch the second half of the Lakers playoff!
Monday, May 18, 2009
Back to the grind...
Well folks, it has been a wonderful couple of weeks, treatment free (especially after being pulled of the Thalidomide), back at home with the kids, seeing a very few friends and feeling mostly normal. However, cancer waits for no man and so we are departing for the airport at the ungodly hour of 5AM for our return to Little Rock.
This means the blog will be updated more frequently ("Huzzah!" comes the cry of about four people) and I will once again be submitting myself to, in the words of the Simpsons writers re: Mister Burns, "a series of painful medical procedures designed to cheat death for another week." I'm heading back to the world of daily blood work, the occasional great pizza (www.damgoodepies.com), and separation anxiety.
My cold has worsened -- I really don't know what this is going to mean for the timing of continuing therapy. Frankly, the thought of having to lie flat on my back for a total of three hours tomorrow between the PET and MRI is rather daunting as I can't breathe terribly well. I've also got a cough -- it's nothing more than a chest cold, but each time I cough I'm reminded of that HORRIBLE three week stretch in the hospital and, especially, afterwards (because I was no longer doped up on Dilaudid and was completely aware of how horrible coughing 200 times a day is).
My back pain is real, unfortunately. It seems to be centered in the middle of my back, running across from side to side. It's difficult to pinpoint when it flares up, too. One benefit of the MRI tomorrow night will be a detailed structural analysis of what's going on -- between that and the PET, I should know how much (if any) of the pain is due to cancer, how much is due to the back surgery, and how much is due to other factors which I might or might now be able to ascertain completely. I'm looking forward to getting to the bottom of this...and I'll have to focus on that information because tomorrow starts at 6AM and won't end until 12 hours later. They love their tests.
Then on Wednesday I'll have another bone marrow done. I have decided definitively against having another gene array done -- I've done my part for science by giving them three other gene arrays, and I'm sorry but contributing to a further database that is unlikely to improve the quality of the treatment for low-risk MM and might have no therapeutic value at all isn't gonna happen. After the last gene array I couldn't sit down or walk without discomfort for about ten days. I might add, my once attractive posterior (so I've been told) has SIX dime sized bruises that will not go away -- I've got ones there from the beginning of March. I might as well be walking around with those plugs that the people in The Matrix had. So I'm not too keen to add to the connect-the-dots on my ass, thankyouverymuch.
It's time to grab my bags and head out, so I'll draw this to a close. I hope the next chapter is extremely dull medically but full of wit to make your readership worthwhile. :) Thank you all again for being an important part of my fight.
Onward!
This means the blog will be updated more frequently ("Huzzah!" comes the cry of about four people) and I will once again be submitting myself to, in the words of the Simpsons writers re: Mister Burns, "a series of painful medical procedures designed to cheat death for another week." I'm heading back to the world of daily blood work, the occasional great pizza (www.damgoodepies.com), and separation anxiety.
My cold has worsened -- I really don't know what this is going to mean for the timing of continuing therapy. Frankly, the thought of having to lie flat on my back for a total of three hours tomorrow between the PET and MRI is rather daunting as I can't breathe terribly well. I've also got a cough -- it's nothing more than a chest cold, but each time I cough I'm reminded of that HORRIBLE three week stretch in the hospital and, especially, afterwards (because I was no longer doped up on Dilaudid and was completely aware of how horrible coughing 200 times a day is).
My back pain is real, unfortunately. It seems to be centered in the middle of my back, running across from side to side. It's difficult to pinpoint when it flares up, too. One benefit of the MRI tomorrow night will be a detailed structural analysis of what's going on -- between that and the PET, I should know how much (if any) of the pain is due to cancer, how much is due to the back surgery, and how much is due to other factors which I might or might now be able to ascertain completely. I'm looking forward to getting to the bottom of this...and I'll have to focus on that information because tomorrow starts at 6AM and won't end until 12 hours later. They love their tests.
Then on Wednesday I'll have another bone marrow done. I have decided definitively against having another gene array done -- I've done my part for science by giving them three other gene arrays, and I'm sorry but contributing to a further database that is unlikely to improve the quality of the treatment for low-risk MM and might have no therapeutic value at all isn't gonna happen. After the last gene array I couldn't sit down or walk without discomfort for about ten days. I might add, my once attractive posterior (so I've been told) has SIX dime sized bruises that will not go away -- I've got ones there from the beginning of March. I might as well be walking around with those plugs that the people in The Matrix had. So I'm not too keen to add to the connect-the-dots on my ass, thankyouverymuch.
It's time to grab my bags and head out, so I'll draw this to a close. I hope the next chapter is extremely dull medically but full of wit to make your readership worthwhile. :) Thank you all again for being an important part of my fight.
Onward!
Friday, May 15, 2009
Another lab update and more good news...
It's funny...I've become so accustomed to getting daily labs from BB's clinic that it's an almost unimaginable wait to have my blood drawn on Monday the 11th and not have the information until Friday the 15th! And yet, that was the case for a lot of my data.
I called SH's office to get the all important numbers: M-spike, IgG, and CRP to see if I'm gonna be sick or not.
Good news all around.
M-spike is now 0.63. This is about an 85% reduction from diagnosis and almost 90% from start of therapy. My expectation is now that I will be in complete remission after my second transplant -- so barring anything really unfortunate happening, I should be cancer free in about three weeks. Then I'll have an additional course of chemo plus thal and dex afterwards just as a "good bye and good riddance" kick to the face.
Most people would stop treatment now, but BB's treatment is only half over. It's aggressive, but it will be the difference between remission and cure, I think.
IgG is now 1083. This is so normal it's not really worth tracking any longer. This, too, is about an 80% reduction from diagnosis and about 90% from start of therapy. I suppose it will go lower still, but normal is 700 to 1400, so I don't expect it to drop too much further. There simply isn't that much cancer left in me.
CRP is 3.9, which is still low enough to permit therapy to continue -- although this was Monday, before the tickle in the throat (which persists, but I think with some luck I may have caught it early enough).
Going to celebrate with some steak from Lobel's this evening...and a very nice bottle of wine.
I called SH's office to get the all important numbers: M-spike, IgG, and CRP to see if I'm gonna be sick or not.
Good news all around.
M-spike is now 0.63. This is about an 85% reduction from diagnosis and almost 90% from start of therapy. My expectation is now that I will be in complete remission after my second transplant -- so barring anything really unfortunate happening, I should be cancer free in about three weeks. Then I'll have an additional course of chemo plus thal and dex afterwards just as a "good bye and good riddance" kick to the face.
Most people would stop treatment now, but BB's treatment is only half over. It's aggressive, but it will be the difference between remission and cure, I think.
IgG is now 1083. This is so normal it's not really worth tracking any longer. This, too, is about an 80% reduction from diagnosis and about 90% from start of therapy. I suppose it will go lower still, but normal is 700 to 1400, so I don't expect it to drop too much further. There simply isn't that much cancer left in me.
CRP is 3.9, which is still low enough to permit therapy to continue -- although this was Monday, before the tickle in the throat (which persists, but I think with some luck I may have caught it early enough).
Going to celebrate with some steak from Lobel's this evening...and a very nice bottle of wine.
Thursday, May 14, 2009
Thanksgiving in May
Just a quick little note here...I started this blog after Thanksgiving, and with any luck, by this Thanksgiving the posts will be irregular. I won't necessarily have the opportunity to tie Thanksgiving, the holiday, to the feelings I have for those who follow this blog -- especially those who are kind enough to call, email, post, etc., some of whom have even tolerated my inability to call back right away, etc.
My point is: I'm thankful for each and every one of you. I truly feel like I'm not going through this alone, in large part because of the "virtual support network" I have here with you.
You all make a difference. Thanks!!!!
My point is: I'm thankful for each and every one of you. I truly feel like I'm not going through this alone, in large part because of the "virtual support network" I have here with you.
You all make a difference. Thanks!!!!
Rotten little kids...or "I'm an idiot."
So what's the one thing that could drop a turd in the ol' punchbowl, as they say, of my progress?
Getting sick. As in a plain old common cold.
I've been taking very fastidious care of myself. I've barely left the house, when I have I've barely touched anybody or anything, and I've made very, very liberal use of the alcoholic handwash that kills germs.
The one time I broke with this because I wasn't able to? My daughter's back-to-school night, where I was assaulted by 100 kids under 10, their parents, and every piece of paper, chair, pencil and art project any of them have touched for the past month. I tried to keep the germs at bay with the handwash, but last night, I got a tickle in my throat.
This morning, the tickle is an irritation in my chest. I'm taking Airborne. But barring a sudden dose of good fortune, I'm screwed.
Why does this matter? Well they (the good folks in Little Rock) won't even BEGIN a stem cell transplant process when I'm sick, for obvious reasons. If this cold runs two weeks before it's gone, then it's going to delay everything for two freakin' weeks.
I could not be more displeased. Well, I suppose I could if my cancer was getting worse...which now that I think about it, it might in the intervening time. Unless they put me on more bridging therapy, which means more of that awful thalidomide.
Damn it.
Getting sick. As in a plain old common cold.
I've been taking very fastidious care of myself. I've barely left the house, when I have I've barely touched anybody or anything, and I've made very, very liberal use of the alcoholic handwash that kills germs.
The one time I broke with this because I wasn't able to? My daughter's back-to-school night, where I was assaulted by 100 kids under 10, their parents, and every piece of paper, chair, pencil and art project any of them have touched for the past month. I tried to keep the germs at bay with the handwash, but last night, I got a tickle in my throat.
This morning, the tickle is an irritation in my chest. I'm taking Airborne. But barring a sudden dose of good fortune, I'm screwed.
Why does this matter? Well they (the good folks in Little Rock) won't even BEGIN a stem cell transplant process when I'm sick, for obvious reasons. If this cold runs two weeks before it's gone, then it's going to delay everything for two freakin' weeks.
I could not be more displeased. Well, I suppose I could if my cancer was getting worse...which now that I think about it, it might in the intervening time. Unless they put me on more bridging therapy, which means more of that awful thalidomide.
Damn it.
Monday, May 11, 2009
Numbers update...
I've been getting my blood drawn once a week (hard to adjust to not having daily counts, but I'm managing!) at Dr. SH's place, where this journey began back in November. It's funny to think how much I now know about this disease, and my treatment, and how far advanced BB's protocol is relative to the historically standard course of action...
At any rate, my results from May 4th were ready today, so here are the salient points:
1. White blood cells and platelets are normal (no surprise there)
2. Red blood cells remain low, but hemoglobin is at 9.7 so it is steadily creeping up
3. Electrolytes are a little goofy but very close to normal range (sodium is a tiny bit high, potassium and phosphorus a tiny bit low, I'm not gonna worry about them)
4. Cholesterol is back up to 250...although this was not a fasting test so it's probably skewed quite high
5. Liver numbers are still mildly elevated but they appear to be coming down very, very slowly
6. Okay...the important stuff! Protein spike is now at 0.83! IgG is now at 1180! These are very good numbers (in fact, IgG is technically within "normal" range although the M-spike is proof of abnormality), and probably reflect the impact of the four-day course of thalidomide / dex that I was on before having these labs drawn, but I am very hopeful that we'll be in complete remission after the second transplant. In related news, creatinine remains very good (yay kidneys!) and albumin has climbed to over 4, which is great (it was below 2 for a while and that's not good).
In general, a good day at the ol' lab. Sadly, one week until the return to Little Rock. Oh well -- the sooner we commence, the sooner it's over!
At any rate, my results from May 4th were ready today, so here are the salient points:
1. White blood cells and platelets are normal (no surprise there)
2. Red blood cells remain low, but hemoglobin is at 9.7 so it is steadily creeping up
3. Electrolytes are a little goofy but very close to normal range (sodium is a tiny bit high, potassium and phosphorus a tiny bit low, I'm not gonna worry about them)
4. Cholesterol is back up to 250...although this was not a fasting test so it's probably skewed quite high
5. Liver numbers are still mildly elevated but they appear to be coming down very, very slowly
6. Okay...the important stuff! Protein spike is now at 0.83! IgG is now at 1180! These are very good numbers (in fact, IgG is technically within "normal" range although the M-spike is proof of abnormality), and probably reflect the impact of the four-day course of thalidomide / dex that I was on before having these labs drawn, but I am very hopeful that we'll be in complete remission after the second transplant. In related news, creatinine remains very good (yay kidneys!) and albumin has climbed to over 4, which is great (it was below 2 for a while and that's not good).
In general, a good day at the ol' lab. Sadly, one week until the return to Little Rock. Oh well -- the sooner we commence, the sooner it's over!
Thursday, May 7, 2009
A minor update, in which your humble narrator suffers from a myriad of minor ailments...
Just a few odds and ends here. First up: the Thalidomide caused an allergic reaction on my face. It's not too bad to look at (I just look tan) but it itches quite a bit. Thankfully they have pulled me off Thalidomide for a week to see if it goes away, which is fine by me as I hate that stuff. I took it for six days, four of them with Dex, and that should be enough to keep the cancer suppressed for another couple of weeks until my next transplant.
Secondly, my rapid heartbeat isn't going away and it's making me a little edgy. I'm probably around 120 beats a minute which is a lot quicker than it used to be. It's been this way since about a week after the transplant, and I had hoped it was just going to be a temporary thing while my blood was being manufactured. Now I'm not so sure. Meanwhile all I can think of is the ol' ticker has X number of beats in it and I'd just as soon not have them go by so quickly.
My back has been much better, but it's getting a little stiff again. This could be the dex wearing off, or it could be my imagination. Again, another "wait and see" situation.
Having said all that, it is wonderful to be home. I do feel as though the hardest part of the road is behind me. I basically have two four-week stretches ahead, after which I'll be back here on a full-time basis and only having to deal with maintenance therapy...which hopefully will be free of allergic reactions!
I hope you are all doing well, and I'll write more as my return to Little Rock draws nearer.
Secondly, my rapid heartbeat isn't going away and it's making me a little edgy. I'm probably around 120 beats a minute which is a lot quicker than it used to be. It's been this way since about a week after the transplant, and I had hoped it was just going to be a temporary thing while my blood was being manufactured. Now I'm not so sure. Meanwhile all I can think of is the ol' ticker has X number of beats in it and I'd just as soon not have them go by so quickly.
My back has been much better, but it's getting a little stiff again. This could be the dex wearing off, or it could be my imagination. Again, another "wait and see" situation.
Having said all that, it is wonderful to be home. I do feel as though the hardest part of the road is behind me. I basically have two four-week stretches ahead, after which I'll be back here on a full-time basis and only having to deal with maintenance therapy...which hopefully will be free of allergic reactions!
I hope you are all doing well, and I'll write more as my return to Little Rock draws nearer.
Saturday, May 2, 2009
Weekend update
Pinnacle Care's nurse (not Elizabeth, who is in bed with a 7-month twin pregnancy!) came by yesterday to supervise me changing my dressing and the tips on the lumens. Everything went well. The materials aren't 100% the same as what they use in the hospital but they are close enough, and I've got enough Saline and Heparin to keep the lines functional. So I can cross that concern off my list.
Not much else to report, other than the back pain is real and not going anywhere. I had thought the dex would relieve it pretty significantly but day two on dex and nothing. My hope is that it's muscle atrophy. I'm trying to do some light stuff around the house (moving wine boxes, etc, which does involve lifting things that weigh 50 pounds or so, and I'm sure that has a lot to do with it). I don't know any better way to build muscle, though, except through use.
Otherwise, tired, but feeling good. It is so uplifting to be back home and spent time with my children and as a family. We had a couple of friends over for dinner last night, ate a great meal, drank some good wine -- almost normal! It felt really, really good and I look forward to the day when I can do this without worrying about having to begin another course of treatment soon. And, of course, without the back pain.
Not much else to report, other than the back pain is real and not going anywhere. I had thought the dex would relieve it pretty significantly but day two on dex and nothing. My hope is that it's muscle atrophy. I'm trying to do some light stuff around the house (moving wine boxes, etc, which does involve lifting things that weigh 50 pounds or so, and I'm sure that has a lot to do with it). I don't know any better way to build muscle, though, except through use.
Otherwise, tired, but feeling good. It is so uplifting to be back home and spent time with my children and as a family. We had a couple of friends over for dinner last night, ate a great meal, drank some good wine -- almost normal! It felt really, really good and I look forward to the day when I can do this without worrying about having to begin another course of treatment soon. And, of course, without the back pain.
Friday, May 1, 2009
Last comments pre-poison...
It was a nice 48 hours, taking only a couple of pills neither of which would harm me.
GI tract ALMOST fully back to normal (basically takes four weeks from date of transplant, or roughly a month from Melphalan, about what I expeted). Taste has mostly returned although I do have that lingering sense of bitterness on the back of my tongue that flares up every once in a while.
My back pain has worsened. I did some lifting (boxes and children) around the house so that could have aggravated it -- my muscle tone is shot to hell so it may just be that physical therapy is needed before I can do much of anything. It starts off okay in the morning and gets worse through the day, so that is an argument against cancer / bones breaking and in favor of physical therapy being needed. But in any case it was severe enough yesterday that I had to take a couple of courses of Tylenol (including one to be able to sleep). I might even welcome the MRI in a couple of weeks time. Maybe. :)
The Thalidomide arrived yesterday, so today I start the poison. This time only 20mg of Dex versus the 40mg used in primary therapy, but I'm sure it will be enough to further wither my muscles -- which is fine, so long as it further withers the cancer, I suppose. And then this evening the Thalidomide. The dose is reduced (100mg versus 200mg) but it's every day for three weeks instead of for four days...and this has me worried about neuropathy, so I started taking MetaNx last night and will take both that and, when Jill returns from the pharmacy today, Cymbalta as well to ward off those effects.
I'm a little worried about the Cymbalta, too...it's primary use is as an anti-depressant. When I took it for four days to help with neuropathy, I didn't worry about it. But if I'm on this for three weeks, it will be a more complicated thing to wean myself off of it...for that reason I might take one every other day instead.
[10 minutes passage of time here]
Okay, so I've researched them both. MetaNx is successful in relieving neuropathy symptoms among diabetics -- it's unclear how much it prevents neuropathy other than relieves symptoms. Cymbalta is more of a temporary relief thing, and definitely a palliative rather than a preventative. That means: MetaNX yes, Cymbalta not needed. If I experience any neuropathy whatsoever, I call the clinic and they'll cut the dose, damn it!
Onward.
GI tract ALMOST fully back to normal (basically takes four weeks from date of transplant, or roughly a month from Melphalan, about what I expeted). Taste has mostly returned although I do have that lingering sense of bitterness on the back of my tongue that flares up every once in a while.
My back pain has worsened. I did some lifting (boxes and children) around the house so that could have aggravated it -- my muscle tone is shot to hell so it may just be that physical therapy is needed before I can do much of anything. It starts off okay in the morning and gets worse through the day, so that is an argument against cancer / bones breaking and in favor of physical therapy being needed. But in any case it was severe enough yesterday that I had to take a couple of courses of Tylenol (including one to be able to sleep). I might even welcome the MRI in a couple of weeks time. Maybe. :)
The Thalidomide arrived yesterday, so today I start the poison. This time only 20mg of Dex versus the 40mg used in primary therapy, but I'm sure it will be enough to further wither my muscles -- which is fine, so long as it further withers the cancer, I suppose. And then this evening the Thalidomide. The dose is reduced (100mg versus 200mg) but it's every day for three weeks instead of for four days...and this has me worried about neuropathy, so I started taking MetaNx last night and will take both that and, when Jill returns from the pharmacy today, Cymbalta as well to ward off those effects.
I'm a little worried about the Cymbalta, too...it's primary use is as an anti-depressant. When I took it for four days to help with neuropathy, I didn't worry about it. But if I'm on this for three weeks, it will be a more complicated thing to wean myself off of it...for that reason I might take one every other day instead.
[10 minutes passage of time here]
Okay, so I've researched them both. MetaNx is successful in relieving neuropathy symptoms among diabetics -- it's unclear how much it prevents neuropathy other than relieves symptoms. Cymbalta is more of a temporary relief thing, and definitely a palliative rather than a preventative. That means: MetaNX yes, Cymbalta not needed. If I experience any neuropathy whatsoever, I call the clinic and they'll cut the dose, damn it!
Onward.
Wednesday, April 29, 2009
I just flew in from Arkansas and boy...
...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!
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!
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.
Subscribe to:
Posts (Atom)
