I don't know what's wrong with me. You'd think that with the impending uncertainty involving Ted's employment that I would be a bit more hesitant to spend my money, but it seems that the opposite is true.
First, there have been the necessities. For example, the $340 on Fang Heisenburg, our car. This is in addition to the $1000 for the initial set of repairs and the $300 for the tune-up at Jiffy Lube. I admit it now: we overpaid for a lemon. I blame it partially on my health. We went car shopping very soon after I got out of the hospital, and car shopping took a lot out of me, to the point where I was too willing to settle and neither Ted nor Dad stopped me. The car itself is a 2002 Ford Escort with 93k miles on it, and we paid about $5600 for it after taxes and fees. Then there's the $800 insurance that I paid. Car ownership is terrible.
In any case, most of the car expenses have been spread out, so it's not too bad. It's just that there have been a lot of annoying expenses, lately. $300 to replace my failing PS3. $120 to replace my failing router (granted, I got a top of the line router). It just feels like everything is failing around me. And just a few days ago, Ted's laptop (and only computer) died.
Then of course there's food, and I've been eating a lot of it. Food can be very expensive when you consume it in those quantities. I felt bad that I was eating so much food, so I picked up the grocery bill by myself several times after getting out of the hospital.
Of course, my real weakness is luxuries. I've been splurging on video games and downloadable content now that I'm enjoying games again. I've probably spent more than $200 on that stuff in the past month. Then there's also the Nook for $260 and probably about $100 of e-books. Pretty soon I'm going to get a Droid X for $200 and I'm going to finally start paying for my cell phone, which will be $40 a month on our special retiree family plan (Dad used to work for Bell Atlantic) including voice and data. Thank goodness today is payday.
At least I have prescription insurance now! That makes my medicine a lot cheaper at least. A LOT.
As for my health, things look good right now. I got the vaccinations that I need in preparation for the splenectomy. I'll be meeting with the surgeon next Friday to schedule that. My blood cell counts are much better than last week, too. I did end up coming home an hour early today, though, since my shoulders are kind of hurting at the vaccination sites, it's pretty disracting, and I had reached a good stopping point.
Friday, July 09, 2010
Thursday, July 01, 2010
There's a Splenectomy in Your Future
Well, the CT scan showed that the spleen is about twice the size that it should be, so at this point we're pretty sure that it's coming out. I'm OK with it, and once I convinced Mom that I would be better for it, she seemed to be OK with it too. I think it was the doctor telling her that there could be leukemic cells hiding in the spleen that finally convinced her that removing the spleen was OK.
I think I might see if I can't get a Droid with a data plan before I go into the hospital. Hopefully by then my copy of Baldur's Gate will have arrived, and hopefully it will work with PlayOnLinux on my laptop. And who knows, maybe I'll even do some work while I'm in the hospital this time.
There is some good news: I only have to see the doctor once next week (instead of the previous twice-a-week). That means I get to go into work four days instead of three. Oh, except the University is closed Monday. As much as I shouldn't take the time off, maybe I will anyway to spend the day with Ted. That would be nice.
After my doctor's visit today, I was going to try to get our car inspected for emissions and get a prescription filled. On the way to the emissions inspection station, Ted discovered that if the Check Engine light is on, you fail automatically, so I'll have to take the car in to the mechanic again tomorrow and hopefully he can fix that before the emissions inspection deadline on the 7th.
Then I went to CVS to get my prescription filled. First, they had a lot of trouble verifying the prescription. Then when they did, they didn't have the generic version of the drug (tacrolimus). She gave me two pills of the brand name drug for free and told me to come back tomorrow after they ordered the generic stuff. It's only going to be $5 with my prescription coverage (as opposed to the $200 it was before)! I don't understand how health insurance/health care works.
Finally, Ted just got the unfortunate news that the NSA will not be hiring him, so pretty soon he'll be unemployed. If you or anyone you know is looking to hire a math Ph.D., let me know.
I think I might see if I can't get a Droid with a data plan before I go into the hospital. Hopefully by then my copy of Baldur's Gate will have arrived, and hopefully it will work with PlayOnLinux on my laptop. And who knows, maybe I'll even do some work while I'm in the hospital this time.
There is some good news: I only have to see the doctor once next week (instead of the previous twice-a-week). That means I get to go into work four days instead of three. Oh, except the University is closed Monday. As much as I shouldn't take the time off, maybe I will anyway to spend the day with Ted. That would be nice.
After my doctor's visit today, I was going to try to get our car inspected for emissions and get a prescription filled. On the way to the emissions inspection station, Ted discovered that if the Check Engine light is on, you fail automatically, so I'll have to take the car in to the mechanic again tomorrow and hopefully he can fix that before the emissions inspection deadline on the 7th.
Then I went to CVS to get my prescription filled. First, they had a lot of trouble verifying the prescription. Then when they did, they didn't have the generic version of the drug (tacrolimus). She gave me two pills of the brand name drug for free and told me to come back tomorrow after they ordered the generic stuff. It's only going to be $5 with my prescription coverage (as opposed to the $200 it was before)! I don't understand how health insurance/health care works.
Finally, Ted just got the unfortunate news that the NSA will not be hiring him, so pretty soon he'll be unemployed. If you or anyone you know is looking to hire a math Ph.D., let me know.
Wednesday, June 30, 2010
Going Back to OK
As expected, Mom worried everyone for no reason. The bone marrow biopsy revealed that there were still no cancer cells in my bone marrow, which again is a really good sign that the leukemia is cured. What's more, Dr. Yanovich (my primary doctor, now) felt around and he thinks my spleen is actually shrinking, that the CT scan was in some way anomalous due to the medication I received in the hospital.
So basically Dr. Akpek made my mom panic over nothing. And panic she did: I didn't realize how worried she was until Billy came with her to the doctor last Monday. She felt a little foolish after I explained things to her, but at least she's not as worried now.
Just to be sure, they did another CT scan on Monday. I'll get the results tomorrow, but I'm sure my spleen will be smaller.
My appetite is becoming managable. I think it has helped that I've had a lot to do recently, between Ted's parents being in town and with Bobby and Hillary leaving. I haven't had a chance to cook for almost a week, really, and I've been kind of forced to eat out more than I'd like given my neutropenia. But the food was great, and I don't think I had to pay for anything. Always a plus.
My energy level is waning, but I'm still getting in to work whenever I don't go to the hospital. I'm just really tired afterward, you know, like a normal person. At least I'm making progress again, finally, even if it's a bit slower than I'd like. I'm still going to try to propose this summer, but we'll see if I manage it.
Finally, I think my depression is finally clearing up. I was feeling pretty down while I was in the hospital, and I could tell because I didn't want to play video games. But that's all cleared up now, and I'm enjoying Star Ocean: The Last Hope (even though I had to replace my PS3 to play it) and Civilization 4 (which I got to work in Linux). It feels really good to be getting back to a fairly normal life. Now if I could just cut down on the doctor visits...
So basically Dr. Akpek made my mom panic over nothing. And panic she did: I didn't realize how worried she was until Billy came with her to the doctor last Monday. She felt a little foolish after I explained things to her, but at least she's not as worried now.
Just to be sure, they did another CT scan on Monday. I'll get the results tomorrow, but I'm sure my spleen will be smaller.
My appetite is becoming managable. I think it has helped that I've had a lot to do recently, between Ted's parents being in town and with Bobby and Hillary leaving. I haven't had a chance to cook for almost a week, really, and I've been kind of forced to eat out more than I'd like given my neutropenia. But the food was great, and I don't think I had to pay for anything. Always a plus.
My energy level is waning, but I'm still getting in to work whenever I don't go to the hospital. I'm just really tired afterward, you know, like a normal person. At least I'm making progress again, finally, even if it's a bit slower than I'd like. I'm still going to try to propose this summer, but we'll see if I manage it.
Finally, I think my depression is finally clearing up. I was feeling pretty down while I was in the hospital, and I could tell because I didn't want to play video games. But that's all cleared up now, and I'm enjoying Star Ocean: The Last Hope (even though I had to replace my PS3 to play it) and Civilization 4 (which I got to work in Linux). It feels really good to be getting back to a fairly normal life. Now if I could just cut down on the doctor visits...
Sunday, June 20, 2010
Pop Bone Marrow Biopsy
I got the results from my CT scan. My GI tract has healed; I could have told you this because my bowel movements have been nice and solid recently. Unfortunately, the CT scan also revealed that my spleen is growing again. This could be a sign that the leukemia is coming back, so the doctor decided to do yet another bone marrow biopsy. Unfortunately, the doctor either didn't care how or didn't know how to make the bone marrow biopsy as painless as possible; it really seemed like he wasn't even trying. It was hands down the most painful thing I've ever experienced, though gout still reigns supreme as being the most painful for the longest amount of time.
In any case, depending on the bone marrow biopsy, I'm not sure what's going to happen. The doctor said that there's a chance they might remove my spleen. Apparently the spleen acts as a sponge for blood cells, so my enlarged spleen is part of the explanation for why I've been needing platelets and white blood cells recently. Removing the spleen would help with this, and I guess the liver will pick up the slack, according to the doctor. Still, I hesitate when the doctor suggests removing an organ; it sounds like such a permanent solution to what could be a temporary problem.
Naturally, Mom and Dad are freaking out about this. What's worse, they're telling other people. They don't understand that it's not unusual for leukemia patients to have their spleens removed, so they think this is much more serious than it is, and they've convinced everyone else that that's the case too. That brings us to the party. I got to see most of my family on Saturday at a huge pre-wedding party for my brother Bobby and his fiancé Hillary. Everyone expressed that they were concerned for me and that they were praying for me. Most of the family started out by saying that they heard that I got some bad news recently. I had to repeat about twenty times that things were going well and that it really was just some routine tests.
And really, things are going very well. I feel great. I went in to work three of the five days this past week since I was at the hospital the other two days. I got myself organized, including upgrading to Ubuntu 10.4 on my work, home, and laptop computers -- I have to say that I am quite pleased with it, though they need to fix some of the bugs with Gwibber. I started working on my proposal document, and I have about 8 pages there so far, though a good chunk of that is basically lifted from the Persona paper and needs to be condensed. All in all, I feel great, I'm being productive, and I'm happy. I don't think I could ask for more than that.
Oh, and even better news: because my GI tract is good now and because there's the concern that the leukemia could be coming back, the doctor dropped my steroid dosage drastically and continuously. I'm nearly off the steroids at this point, and today is the first day in a long time that I've actually eaten roughly like a normal person. I'm still a little hungry, but for a change I don't feel that I need to eat. As far as I'm concerned, that's victory.
In any case, depending on the bone marrow biopsy, I'm not sure what's going to happen. The doctor said that there's a chance they might remove my spleen. Apparently the spleen acts as a sponge for blood cells, so my enlarged spleen is part of the explanation for why I've been needing platelets and white blood cells recently. Removing the spleen would help with this, and I guess the liver will pick up the slack, according to the doctor. Still, I hesitate when the doctor suggests removing an organ; it sounds like such a permanent solution to what could be a temporary problem.
Naturally, Mom and Dad are freaking out about this. What's worse, they're telling other people. They don't understand that it's not unusual for leukemia patients to have their spleens removed, so they think this is much more serious than it is, and they've convinced everyone else that that's the case too. That brings us to the party. I got to see most of my family on Saturday at a huge pre-wedding party for my brother Bobby and his fiancé Hillary. Everyone expressed that they were concerned for me and that they were praying for me. Most of the family started out by saying that they heard that I got some bad news recently. I had to repeat about twenty times that things were going well and that it really was just some routine tests.
And really, things are going very well. I feel great. I went in to work three of the five days this past week since I was at the hospital the other two days. I got myself organized, including upgrading to Ubuntu 10.4 on my work, home, and laptop computers -- I have to say that I am quite pleased with it, though they need to fix some of the bugs with Gwibber. I started working on my proposal document, and I have about 8 pages there so far, though a good chunk of that is basically lifted from the Persona paper and needs to be condensed. All in all, I feel great, I'm being productive, and I'm happy. I don't think I could ask for more than that.
Oh, and even better news: because my GI tract is good now and because there's the concern that the leukemia could be coming back, the doctor dropped my steroid dosage drastically and continuously. I'm nearly off the steroids at this point, and today is the first day in a long time that I've actually eaten roughly like a normal person. I'm still a little hungry, but for a change I don't feel that I need to eat. As far as I'm concerned, that's victory.
Wednesday, June 16, 2010
Steroids
First of all, now that I'm cancer free*, I've decided that I'm not Living With Carmichael anymore. Hence the blog title and URL change. 100% Go For It! is my new attitude toward life and, in particular, work. I really want to get back into work in a big way, and though physically I'm still a bit weak I think I'm finally getting in to the right mindset to get some work done.
In other news, steroids suck. I'm on 72 mg of methylpredinsalone each day: 60 mg in the morning and 12 mg at night. Sure, I guess they're giving me anti-inflammatory gut-GVHD-healing powers, but the side effects are terrible. I'm all puffy with edema, my muscles are severely weakened (though they are getting stronger with use), I'm temporarily diabetic and have to manage my blood sugar with insulin injections, my appetite is absolutely ridiculous, and sometimes -- like right now -- I can't sleep. It kind of puts a cramp in my new 100% Go For It! attitude when I know I'm going to be tired in the morning, but there's nothing for it but to take more steroids and keep going.
To give you some idea of my appetite, here's what I ate today:
I really don't know how many calories that is, but the McDonalds is probably over 1000 alone, not to mention all of the soda I've been drinking throughout the day (at least 2 20oz pepsis and 4 12oz cokes). The doctors sent me home with the instructions to try to limit my diet to about 1800-1900 calories per day; it just cannot be done! Not on this many steroids. I'm hoping the doctor will cut my dosage down on Thursday, but I have a feeling he won't because I am still occasionally having a little bit of diarrhea and I think that's their metric for reducing the steroids. On the other hand, maybe the CT scan I got on Monday will show a drastic reduction in the inflammation in my gut and they'll feel more comfortable reducing my steroids. I wouldn't be surprised if the CT scan were very positive; in general I've been having healthy bowel movements and my GI tract feels fine now.
Okay, an hour later it's 3:00. The real question: can I get back to sleep?
*A recent bone marrow biopsy indicates that I have 0% cancer in my stem cells and 0.004% cancerous cells in the blood stream -- supposedly the graft-versus-host effect of the stem cell transplant will eventually totally fix the blood stream but it takes time. I'm not sure how many significant digits there are on the 0%.
In other news, steroids suck. I'm on 72 mg of methylpredinsalone each day: 60 mg in the morning and 12 mg at night. Sure, I guess they're giving me anti-inflammatory gut-GVHD-healing powers, but the side effects are terrible. I'm all puffy with edema, my muscles are severely weakened (though they are getting stronger with use), I'm temporarily diabetic and have to manage my blood sugar with insulin injections, my appetite is absolutely ridiculous, and sometimes -- like right now -- I can't sleep. It kind of puts a cramp in my new 100% Go For It! attitude when I know I'm going to be tired in the morning, but there's nothing for it but to take more steroids and keep going.
To give you some idea of my appetite, here's what I ate today:
- 6:30 AM: Full bowl of Corn Pops cereal
- 7:00 AM: 2 Hard-boiled Eggs (including yolks)
- 8:15 AM: 2 Turkey sandwiches and 2 pickle spears (this was supposed to be lunch, but I got bored and hungry while waiting for a bus)
- 9:30 AM: 1 bag of Doritos (I needed something to snack on at work!)
- 12:00 PM: 1 Double Quarter Pounder with Cheese and 1 Large Fry from McDonalds (I'm not supposed to eat out on my neutropenic diet, but I can't resist sometimes; at least I nuked it in the microwave before eating it)
- 2:30 PM: 1 bag of animal crackers (I needed a snack after a meeting with my advisor)
- 6:00 PM: 1 large beef stir-fry (I estimate that my recipe serves 3 and I had half of it)
- 7:00 PM: 1 popsicle, two somewhat large pretzels, and a handful of gummy worms
- 8:00 PM: 1 entire quarter package of Saltines
- 10:00 PM: 3 cups of beef broth
- 2:30 AM: A handful of Corn Pops (I'm starving and I can't sleep -- not a good combination!)
I really don't know how many calories that is, but the McDonalds is probably over 1000 alone, not to mention all of the soda I've been drinking throughout the day (at least 2 20oz pepsis and 4 12oz cokes). The doctors sent me home with the instructions to try to limit my diet to about 1800-1900 calories per day; it just cannot be done! Not on this many steroids. I'm hoping the doctor will cut my dosage down on Thursday, but I have a feeling he won't because I am still occasionally having a little bit of diarrhea and I think that's their metric for reducing the steroids. On the other hand, maybe the CT scan I got on Monday will show a drastic reduction in the inflammation in my gut and they'll feel more comfortable reducing my steroids. I wouldn't be surprised if the CT scan were very positive; in general I've been having healthy bowel movements and my GI tract feels fine now.
Okay, an hour later it's 3:00. The real question: can I get back to sleep?
*A recent bone marrow biopsy indicates that I have 0% cancer in my stem cells and 0.004% cancerous cells in the blood stream -- supposedly the graft-versus-host effect of the stem cell transplant will eventually totally fix the blood stream but it takes time. I'm not sure how many significant digits there are on the 0%.
Friday, June 11, 2010
One step forward and two steps back
Well, no one said a stem cell transplant would be easy. For a long while, I was tolerating the effects of graft-versus-host disease, an important part of the healing process because it comes along with the graft-versus-tumor effect that will guarantee that my cancer does not return. A recent bone marrow biopsy revealed no cancer in my stem cells, and a very small amount in my blood stream (which is apparently OK, and what the graft-versus-tumor effect is taking care of).
Unfortunately, I finally got to the point where my graft-versus-host disease was no longer tolerable. I had between stage 2 and stage 3 GVHD of the GI tract, and it got to the point where I couldn't keep anything down; I was vomiting nonstop and had unstoppable diarrhea. So, I was readmitted to the hospital and put on a ton of steroids and immunosuppressants just as I was when I was initially treated for the stem cell transplant. So in some sense, I feel like I'm back to square one. But at least I have hair now!
Still, despite being back on as many --- actually more --- meds as I was back then, I am actually feeling a lot better than I had been recently, so that's good. The only problem right now is that my hospital stay has once again left my muscles fairly atrophied. I'm slowly building my strength back, though. I'm able to get around the apartment pretty well at this point, though I still need to use my arms to stand up from sitting down. Getting up and down the three flights of stairs to my apartment is still pretty tricky.
In terms of keeping my spirits up, I made a very good purchase recently: a Nook from Barnes & Noble. I absolutely love it. I wish I had it during my recent hospital stay, but at least I'll have it for the next one. It is incredibly comfortable to read books on it. It feels like it was designed for my hands specifically. I suspect I will get a lot of use out of this thing; I've already read four of the Dresden Files books on it.
Additionally, I got a recipe book. I've been having quite a bit of fun with it, and I've made a few really good dishes. I also misinterpreted something that resulted in a glassy explosion. It nearly traumatized me, but Ted helped me clear it up and calm down. Hopefully I learned something and won't make the same mistake again. The Nook isn't great as a cookbook since it takes some work to get to the recipe you want, so I might need to get a hard copy. At the same time I'd prefer to just develop an intuition and a mental repository of recipes, maybe even just compiling my own little recipe book from the recipes that are a success. So far, my big successes have been jambalaya and something I'm going to call a lemon catfish pocket. I'm fine with making scrambled eggs and bacon, though I had some difficulty with pancakes. My home fries weren't quite right, but they were still tasty and I think I can fix them with some work. In short, as per doctor's orders I've been cooking every single thing I've eaten for the past week, and it's been a lot of rewarding work. And I've been eating a lot; the steroids make me ravenous.
So that's a basic rundown of my current status. I haven't even been thinking about work, but I'm hoping I'll be able to start back up on Tuesday this coming week. I really need to find a way to get back in to programming, research, and graduate school. It's remarkably difficult to get back into the swing of things when you've been on such a long hiatus; not only is my confidence shaken, but I'm not sure where to even begin working again. I guess all I can do is my best.
Unfortunately, I finally got to the point where my graft-versus-host disease was no longer tolerable. I had between stage 2 and stage 3 GVHD of the GI tract, and it got to the point where I couldn't keep anything down; I was vomiting nonstop and had unstoppable diarrhea. So, I was readmitted to the hospital and put on a ton of steroids and immunosuppressants just as I was when I was initially treated for the stem cell transplant. So in some sense, I feel like I'm back to square one. But at least I have hair now!
Still, despite being back on as many --- actually more --- meds as I was back then, I am actually feeling a lot better than I had been recently, so that's good. The only problem right now is that my hospital stay has once again left my muscles fairly atrophied. I'm slowly building my strength back, though. I'm able to get around the apartment pretty well at this point, though I still need to use my arms to stand up from sitting down. Getting up and down the three flights of stairs to my apartment is still pretty tricky.
In terms of keeping my spirits up, I made a very good purchase recently: a Nook from Barnes & Noble. I absolutely love it. I wish I had it during my recent hospital stay, but at least I'll have it for the next one. It is incredibly comfortable to read books on it. It feels like it was designed for my hands specifically. I suspect I will get a lot of use out of this thing; I've already read four of the Dresden Files books on it.
Additionally, I got a recipe book. I've been having quite a bit of fun with it, and I've made a few really good dishes. I also misinterpreted something that resulted in a glassy explosion. It nearly traumatized me, but Ted helped me clear it up and calm down. Hopefully I learned something and won't make the same mistake again. The Nook isn't great as a cookbook since it takes some work to get to the recipe you want, so I might need to get a hard copy. At the same time I'd prefer to just develop an intuition and a mental repository of recipes, maybe even just compiling my own little recipe book from the recipes that are a success. So far, my big successes have been jambalaya and something I'm going to call a lemon catfish pocket. I'm fine with making scrambled eggs and bacon, though I had some difficulty with pancakes. My home fries weren't quite right, but they were still tasty and I think I can fix them with some work. In short, as per doctor's orders I've been cooking every single thing I've eaten for the past week, and it's been a lot of rewarding work. And I've been eating a lot; the steroids make me ravenous.
So that's a basic rundown of my current status. I haven't even been thinking about work, but I'm hoping I'll be able to start back up on Tuesday this coming week. I really need to find a way to get back in to programming, research, and graduate school. It's remarkably difficult to get back into the swing of things when you've been on such a long hiatus; not only is my confidence shaken, but I'm not sure where to even begin working again. I guess all I can do is my best.
Wednesday, March 03, 2010
Allogeneic Stem Cell Transplant for the win!
I've been neglecting my poor blog for way too long at this point. The reason for that is that I spent a lot of time in the hospital, even during the one month that I was supposed to be at home recovering. It's not unexpected to have to come in during that time, but I had to go in three times, and each time took nearly a week. The first time I mentioned in my last post.
The second time was my own stupid fault; I really wanted to hang out with the lab so I joined them for Korean barbeque. I thought that since I was cooking the food myself, so it would be kosher for the neutropenic diet. The next day I was vomiting and I had a fever, so it was off to the hospital again.
Then the third and final time I had all of the symptoms of meningitis: light sensitivity, migraine, and a stiff neck. Fortunately, I guess, it was not meningitis, but instead it was the leukemia making its way into my spinal cord and meninges. I say fortunately because apparently the total body irradiation that was already planned was the treatment for this, so we didn't have to go too far out of the way to treat it, and everything was handled in time so as to not cause any problems. Unfortunately, this put me into the hospital several days before expected, and I would not have another chance to go home between then and the stem cell transplant.
Then the snow happened. Everyone was freaking out about it --- understandably so, from what I could gather --- not the least of which was my brother Billy, the stem cell donor, who needed to be here at the hospital at 7 AM for four days straight to get the Neupogen injections that would sprout peripheral stem cells into his blood stream for collection on Friday, February 12th. Due to the snow, Billy eventually just decided to spend that week up here in my room with me. He was going out of his mind by the end of it; it's kind of a wonder that I've held up as well as I have now that I think of it. Or maybe I only think I'm holding up well.
Anyway, while he was getting his Neupogen, I was actually preparing for the stem cell transplant. This involved getting a new super-duper chemo, getting three days of total body irradiation (TBI), and moving over to the bone marrow transplant wing of the hospital. There's not much to say about the chemo; it was brutal for the few days that I felt it, mostly due to the terrible sore throat that made it difficult to eat and due to the raging diarrhea it evoked. The TBI was strange, and left me all tingly for days, but other than the discomfort from lying perfectly still on the table it really wasn't that bad (unless I've conflated the effects of the TBI with the chemo, which is entirely possible).
The hardest part by far has been the transition to the bone marrow transplant wing. The room is much smaller, much harder to work in (since there's no place that could serve as a table), has meaner and less competent nurses, and has spotty wi-fi to boot. The only thing it has going for it is a view that just reminds me how much I want to be elsewhere. Oh, and thanks to Tacrolimus, an anti-stem-cell-rejection drug, I'm now hooked up to an IV 24-7.
In any case, we survived the snow with only a minimum of grumbling from my family, for which I was thankful. Then the transplant came and went --- it was really just like getting any other blood product, so at this point it was very anti-climactic even though the whole family was there (sans kids). Then the family left, and I was left with a reasonable amount of peace and quiet for the next few weeks. I still get plenty of visitors from friends, family, and health care staff, but I generally have enough privacy to watch some DVDs, watch some streaming Netflix (when the Internet works), or play video games.
Since the transplant, things have gone pretty well. As I mentioned, for a while the biggest problems were diarrhea and a sore spot in my throat. Those are all but a memory now, but now the stem cells have engrafted into my bone marrow. This is a good thing, and it's what we wanted to happen, but unfortunately it came with an acute case of graft-versus-host-disease (GVHD) in the form of a rash. This might be a good thing though, since GVHD increases the likelihood that the cancer will be 100% cured. In the meantime, they're treating the GVHD pretty well with steroids, so I think everything is actually going pretty well.
There was some talk of me getting out of here this weekend, but I think it's just talk. Currently, all of the expensive drugs are taken care of through various patient assistance programs, though I'm waiting for the voriconazole to ship and to get confirmation on both eligibility and shipment of valcyte, which I think is a drug that will weaken my immune system (to help deal with GVHD).
Other than all of that, I'm currently in a holding pattern, playing "the old lady who swallowed a fly" with my medications. I'm ready to get out of here, so here's hoping we can effect that some time soon.
The second time was my own stupid fault; I really wanted to hang out with the lab so I joined them for Korean barbeque. I thought that since I was cooking the food myself, so it would be kosher for the neutropenic diet. The next day I was vomiting and I had a fever, so it was off to the hospital again.
Then the third and final time I had all of the symptoms of meningitis: light sensitivity, migraine, and a stiff neck. Fortunately, I guess, it was not meningitis, but instead it was the leukemia making its way into my spinal cord and meninges. I say fortunately because apparently the total body irradiation that was already planned was the treatment for this, so we didn't have to go too far out of the way to treat it, and everything was handled in time so as to not cause any problems. Unfortunately, this put me into the hospital several days before expected, and I would not have another chance to go home between then and the stem cell transplant.
Then the snow happened. Everyone was freaking out about it --- understandably so, from what I could gather --- not the least of which was my brother Billy, the stem cell donor, who needed to be here at the hospital at 7 AM for four days straight to get the Neupogen injections that would sprout peripheral stem cells into his blood stream for collection on Friday, February 12th. Due to the snow, Billy eventually just decided to spend that week up here in my room with me. He was going out of his mind by the end of it; it's kind of a wonder that I've held up as well as I have now that I think of it. Or maybe I only think I'm holding up well.
Anyway, while he was getting his Neupogen, I was actually preparing for the stem cell transplant. This involved getting a new super-duper chemo, getting three days of total body irradiation (TBI), and moving over to the bone marrow transplant wing of the hospital. There's not much to say about the chemo; it was brutal for the few days that I felt it, mostly due to the terrible sore throat that made it difficult to eat and due to the raging diarrhea it evoked. The TBI was strange, and left me all tingly for days, but other than the discomfort from lying perfectly still on the table it really wasn't that bad (unless I've conflated the effects of the TBI with the chemo, which is entirely possible).
The hardest part by far has been the transition to the bone marrow transplant wing. The room is much smaller, much harder to work in (since there's no place that could serve as a table), has meaner and less competent nurses, and has spotty wi-fi to boot. The only thing it has going for it is a view that just reminds me how much I want to be elsewhere. Oh, and thanks to Tacrolimus, an anti-stem-cell-rejection drug, I'm now hooked up to an IV 24-7.
In any case, we survived the snow with only a minimum of grumbling from my family, for which I was thankful. Then the transplant came and went --- it was really just like getting any other blood product, so at this point it was very anti-climactic even though the whole family was there (sans kids). Then the family left, and I was left with a reasonable amount of peace and quiet for the next few weeks. I still get plenty of visitors from friends, family, and health care staff, but I generally have enough privacy to watch some DVDs, watch some streaming Netflix (when the Internet works), or play video games.
Since the transplant, things have gone pretty well. As I mentioned, for a while the biggest problems were diarrhea and a sore spot in my throat. Those are all but a memory now, but now the stem cells have engrafted into my bone marrow. This is a good thing, and it's what we wanted to happen, but unfortunately it came with an acute case of graft-versus-host-disease (GVHD) in the form of a rash. This might be a good thing though, since GVHD increases the likelihood that the cancer will be 100% cured. In the meantime, they're treating the GVHD pretty well with steroids, so I think everything is actually going pretty well.
There was some talk of me getting out of here this weekend, but I think it's just talk. Currently, all of the expensive drugs are taken care of through various patient assistance programs, though I'm waiting for the voriconazole to ship and to get confirmation on both eligibility and shipment of valcyte, which I think is a drug that will weaken my immune system (to help deal with GVHD).
Other than all of that, I'm currently in a holding pattern, playing "the old lady who swallowed a fly" with my medications. I'm ready to get out of here, so here's hoping we can effect that some time soon.
Saturday, January 16, 2010
In and Out
It's been a little while since I've written, because I've been too busy enjoying life outside of the hospital. My chances of surviving the bone marrow transplant are good -- we think 70% -- but it's not a sure thing, so I've decided that I should just enjoy myself with the time I have until the transplant. And I have been enjoying it, just being at home with Ted, relaxing, watching TV, playing games.
In terms of my health, though, things could be a bit better. I knew when I got out of the hospital last Wednesday that my immune system was very weak, so I tried to be careful. I wear a mask when out in public. I sanitize my hands constantly. It turns out that germs are really hard to avoid, and our bodies do a really good job of fighting them!
That brings us to this past Wednesday. I went in for my infusion for the day, and told them that my throat was a little sore, so they prescribed some antibiotics. Later that night, I had chills. I called the cancer center, and they told me to take my temperature. It was 101.9 F at that point, though three hours earlier it had been 98.3 F. I clearly had an infection, and no way to fight it, so Ted and I left immediately for the hospital.
Ted doesn't like driving; in fact, neither do I. Since we don't have a car, we were fortunate that some of our friends were out of town and that we were borrowing theirs. Ted overcame his reluctance to drive to take me up to the hospital, and we made it there without any problems. By the time we were there, though, I was really out of it.
Things happened pretty fast. They covered me with a heated blanket, and gave me some antibiotics. My fever was pretty high at some point; they weren't constantly taking my temperature, but I could feel it. At some point during the night things must have turned around, because I woke up without a fever the next morning. In fact, I felt pretty good that morning, though I got worse as the day went on. But the important thing was that I was safe.
Over the next few days I learned that it was either a bacterial or fungal pneumonia and they were treating both types just to be sure. I had a CT scan of my chest done, which showed some nodules that made them think it was probably fungal, but I hadn't been given any antifungal medication before I started to feel better. In the end, we're not exactly sure what it was, but the important thing is that it has been treated. During my stay I had some problems with low blood pressure early on, but that went away as they infused me with blood and saline. They also took the opportunity while I was there to do another bone marrow biopsy, which hurt a bit more than the first one though only briefly; I'm not sure what Dr. Rapoport is looking for from the biopsy, but he'll have the results when I see him on Thursday and hopefully it will give us more information at least. Then finally last night, Friday night, I was discharged.
Between my new medicine and the medicine they gave me on Wednesday, I ended up having to shell out more than $500 for prescriptions. Two medications in particular were more than $200: moxifloxacin and ciprofloxacin, both antibiotics. All told, I now have twelve pill bottles which contain eight drugs. I still take seven of those, the only exception being a temporary stop on dasatinib, a.k.a. Sprycel, for reasons I'll explain in a bit. That leaves me on the following seven medications: acyclovir (antiviral), allopurinol (prevents gout), amoxicillin (antibiotic), moxifloxacin (antibiotic), ciprofloxacin (antibiotic), pantoprazole (prophylactic gastro-intestinal something or other), and voriconazole (antifungal).
It's really this last drug that interests me so much: voriconazole. If you look it up on Wikipedia, you'd see that as a side effect it can cause "visual disturbances" that occur within half an hour of taking it and last for about 30 minutes. My nurses said that I might notice some changes in my perception of color. I only started taking the voriconazole on Thursday, and I didn't notice anything too odd while I was in the hospital. When my mom was driving me home, everything looked way too yellow; in fact, when I got to the apartment I was kind of weirded out by the fact that my blue apartment door looked green. My TV at home looked really strange, like each individual pixel was shimmering. I figured this was pretty standard hallucination stuff.
Then I went to bed last night, and had quite a bit of trouble falling asleep. I would see things even with my eyes closed, but they were most vivid when I stared at the plain white ceiling. It was really a lot like when you stare at something that's red for a long time, and then look at something white and see the after-image of the same thing in green. Only now, I just had a constant supply of changing after-images.
I could snap myself out of it temporarily, but it would start back up again, and it always started in the same place. It started with words, thousands of words, some moving left and some moving right at about the same speed, of varying sizes and transparency. Every time I tried to read them, but it was almost impossible, like chasing an after-image when the original image wasn't in the center of your vision. I picked up a few words here and there. I remember I saw "time" multiple times. I don't remember the other words, but they were all unremarkable. As I would try to focus on the words to try to read them, the image would gradually change, as if I were zooming out to see that the words were just some part of some larger geometric pattern. Then came a bunch of psychedelic colors and scenes a la 2001, but not quite as vivid; again, more like what the after-image of the trip in 2001 would look like if you could view it in real time. Then my vision would return to normal for a second, as if to tell me that the show was about to start. And start it did.
It felt like I was dreaming, but I was awake. It was almost like the end of a dream, when you're just about to wake up, and your consciousness recognizes the dream but wants to give it a conclusion. You still believe in the dream, but you're aware of what's happening and you can steer the dream to the point of fantasy. It was almost like that in the sense that I had both consciousness and vivid perception, but I certainly was not in control of the things it showed me. And it showed me many things, some fantastical and some mundane, but all of them in amazing detail. I remember an old black man sitting with two of his friends, smiling in contentment. I remember a phoenix flying away from a group of anime adventurers who were protecting themselves with a magical barrier. I remember an old photograph with two men and a woman in it. I remember seeing a young boy throw a magical frisbee into the sky as his entire village looked on in awe, only to chase it up a mountain and discover a golem at the top. And these are just the ones I remember off the top of my head.
Honestly, it's no wonder that a lot of artists turn to hallucinogens for inspiration, because what I saw last night was amazing and beautiful. It was a fantastic experience, which is why I'm doing my best to share it with any readers out there. But ultimately it is just fantasy. Now that the hallucinations are gone, I'm back to wondering about my health and what long term effects, physical and mental, these drugs will have. Right now, I feel mostly healthy and mostly sane, so I'm going to count that in the win column.
I am concerned about one thing, though. My blood counts are low, and they don't seem to be recovering like they should. I don't really know what this means, but I do know that it's probably a bad sign when the doctors don't know what's going on. This is why I've been told to stop taking the dasatinib. I suspect the bone marrow biopsy will shed more light on this particular problem, and I'm not sure that this problem even affects the bone marrow transplant at all, so until I know more we'll just have to wait and see. If all goes according to plan, the bone marrow transplant will happen on or around February 10th.
In terms of my health, though, things could be a bit better. I knew when I got out of the hospital last Wednesday that my immune system was very weak, so I tried to be careful. I wear a mask when out in public. I sanitize my hands constantly. It turns out that germs are really hard to avoid, and our bodies do a really good job of fighting them!
That brings us to this past Wednesday. I went in for my infusion for the day, and told them that my throat was a little sore, so they prescribed some antibiotics. Later that night, I had chills. I called the cancer center, and they told me to take my temperature. It was 101.9 F at that point, though three hours earlier it had been 98.3 F. I clearly had an infection, and no way to fight it, so Ted and I left immediately for the hospital.
Ted doesn't like driving; in fact, neither do I. Since we don't have a car, we were fortunate that some of our friends were out of town and that we were borrowing theirs. Ted overcame his reluctance to drive to take me up to the hospital, and we made it there without any problems. By the time we were there, though, I was really out of it.
Things happened pretty fast. They covered me with a heated blanket, and gave me some antibiotics. My fever was pretty high at some point; they weren't constantly taking my temperature, but I could feel it. At some point during the night things must have turned around, because I woke up without a fever the next morning. In fact, I felt pretty good that morning, though I got worse as the day went on. But the important thing was that I was safe.
Over the next few days I learned that it was either a bacterial or fungal pneumonia and they were treating both types just to be sure. I had a CT scan of my chest done, which showed some nodules that made them think it was probably fungal, but I hadn't been given any antifungal medication before I started to feel better. In the end, we're not exactly sure what it was, but the important thing is that it has been treated. During my stay I had some problems with low blood pressure early on, but that went away as they infused me with blood and saline. They also took the opportunity while I was there to do another bone marrow biopsy, which hurt a bit more than the first one though only briefly; I'm not sure what Dr. Rapoport is looking for from the biopsy, but he'll have the results when I see him on Thursday and hopefully it will give us more information at least. Then finally last night, Friday night, I was discharged.
Between my new medicine and the medicine they gave me on Wednesday, I ended up having to shell out more than $500 for prescriptions. Two medications in particular were more than $200: moxifloxacin and ciprofloxacin, both antibiotics. All told, I now have twelve pill bottles which contain eight drugs. I still take seven of those, the only exception being a temporary stop on dasatinib, a.k.a. Sprycel, for reasons I'll explain in a bit. That leaves me on the following seven medications: acyclovir (antiviral), allopurinol (prevents gout), amoxicillin (antibiotic), moxifloxacin (antibiotic), ciprofloxacin (antibiotic), pantoprazole (prophylactic gastro-intestinal something or other), and voriconazole (antifungal).
It's really this last drug that interests me so much: voriconazole. If you look it up on Wikipedia, you'd see that as a side effect it can cause "visual disturbances" that occur within half an hour of taking it and last for about 30 minutes. My nurses said that I might notice some changes in my perception of color. I only started taking the voriconazole on Thursday, and I didn't notice anything too odd while I was in the hospital. When my mom was driving me home, everything looked way too yellow; in fact, when I got to the apartment I was kind of weirded out by the fact that my blue apartment door looked green. My TV at home looked really strange, like each individual pixel was shimmering. I figured this was pretty standard hallucination stuff.
Then I went to bed last night, and had quite a bit of trouble falling asleep. I would see things even with my eyes closed, but they were most vivid when I stared at the plain white ceiling. It was really a lot like when you stare at something that's red for a long time, and then look at something white and see the after-image of the same thing in green. Only now, I just had a constant supply of changing after-images.
I could snap myself out of it temporarily, but it would start back up again, and it always started in the same place. It started with words, thousands of words, some moving left and some moving right at about the same speed, of varying sizes and transparency. Every time I tried to read them, but it was almost impossible, like chasing an after-image when the original image wasn't in the center of your vision. I picked up a few words here and there. I remember I saw "time" multiple times. I don't remember the other words, but they were all unremarkable. As I would try to focus on the words to try to read them, the image would gradually change, as if I were zooming out to see that the words were just some part of some larger geometric pattern. Then came a bunch of psychedelic colors and scenes a la 2001, but not quite as vivid; again, more like what the after-image of the trip in 2001 would look like if you could view it in real time. Then my vision would return to normal for a second, as if to tell me that the show was about to start. And start it did.
It felt like I was dreaming, but I was awake. It was almost like the end of a dream, when you're just about to wake up, and your consciousness recognizes the dream but wants to give it a conclusion. You still believe in the dream, but you're aware of what's happening and you can steer the dream to the point of fantasy. It was almost like that in the sense that I had both consciousness and vivid perception, but I certainly was not in control of the things it showed me. And it showed me many things, some fantastical and some mundane, but all of them in amazing detail. I remember an old black man sitting with two of his friends, smiling in contentment. I remember a phoenix flying away from a group of anime adventurers who were protecting themselves with a magical barrier. I remember an old photograph with two men and a woman in it. I remember seeing a young boy throw a magical frisbee into the sky as his entire village looked on in awe, only to chase it up a mountain and discover a golem at the top. And these are just the ones I remember off the top of my head.
Honestly, it's no wonder that a lot of artists turn to hallucinogens for inspiration, because what I saw last night was amazing and beautiful. It was a fantastic experience, which is why I'm doing my best to share it with any readers out there. But ultimately it is just fantasy. Now that the hallucinations are gone, I'm back to wondering about my health and what long term effects, physical and mental, these drugs will have. Right now, I feel mostly healthy and mostly sane, so I'm going to count that in the win column.
I am concerned about one thing, though. My blood counts are low, and they don't seem to be recovering like they should. I don't really know what this means, but I do know that it's probably a bad sign when the doctors don't know what's going on. This is why I've been told to stop taking the dasatinib. I suspect the bone marrow biopsy will shed more light on this particular problem, and I'm not sure that this problem even affects the bone marrow transplant at all, so until I know more we'll just have to wait and see. If all goes according to plan, the bone marrow transplant will happen on or around February 10th.
Subscribe to:
Posts (Atom)