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...
Wednesday, June 30, 2010
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.
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