Wednesday, December 3, 2008


This is kind of a long post, but I haven't posted in a week and it feels like we're at a turning point right now, so I have a lot on my chest :)

Yesterday I went in for more blood work, and the counts showed an even more dramatic improvement than the week before. Woohoo! The graph above shows my white blood counts and you can see that after the last round of induction chemo (the purple bar), the counts have actually returned to normal. The 4 orange bars are when I underwent less intensive chemotherapy. At the beginning of all this, Johanna said we should hit me as hard as possible to try and knock this thing out. I guess she was right :)

The chemo not only wipes out the cancer cells, but it wipes out most of your other blood cells as well, and you can see in the graph how my immune system completely tanked afterwards. This is normal, and once the bulk of the cancer cells were removed from the scene, the marrow could function normally and started growing healthy cells again. In addition to my white blood cell counts, most of my other counts are approaching the normal range as well, which is sort of amazing to me since I've been poring over these numbers for so many months now. In fact, my platelets are still climbing fast and are now actually *higher* than the normal range. When I saw this I must have looked a little frightened, since my oncologist laughed at me and said it was totally fine and that I should stop worrying. Combined with the news last week that my bone marrow was normal, we can technically say that I'm in remission. My oncologist said "it's like being able to tell a mother that she has a healthy baby". He was just as happy as we were.

Being in remission is emotionally weird. It's a strange feeling. For the last 6 months we've been fighting this disease, trying different types of chemotherapy, trying naturopathic remedies and just dealing with the weight of it all. When something is broken, the assumption is that it can only get better when you work on fixing it. So for the last 6 months I've been in the mindset that things are sucking, but that they will only get better since we're trying to fix it. Now that things *are* better, I find myself switching to the mindset that things are good, but that I should enjoy it while it lasts since things will only get worse. That's a hard transition to make. It's also a little hard to get too excited about being in remission since soon we'll be wiping everything out and starting all over again when I go to the transplant, and there are going to be a bunch of new issues like graft-versus-host disease and other unknown challenges to face once the transplant is behind us. I guess the depressing thing is that it feels like right now, in remission with my own blood, is the best I will be. But I'm trying not to think that way since I know it won't last long and we've got to try and fix this thing once and for all.

I'm also not out of the woods quite yet. If you remember, we discovered a fungal infection in the lungs and a possible case of pneumonia that I picked up while I had no immune system. The CAT scan two weeks back showed areas of inflammation in the lungs, which is the body's way of reacting to these infections. I've been on antibiotics and my immune system is recovering, so we assumed things were getting better. Unfortunately, yesterday's CAT scan showed the same inflammation. My doctor thinks it may have shrunk slightly, but the radiologist believes it's still the same size. Since I feel fine and haven't been short of breath or coughing, the plan is to assume things are getting better. We'll do another CAT scan in a couple of weeks to check. If all goes well, we'll head back into the transplant program which means contacting the donor, setting up a transplant date, etc. Otherwise we'll do a biopsy of whatever it is that's in the lungs to figure out what it is so that we can treat it.

The purpose of induction chemo is to induce the leukemia into remission, which it appears to have done. After induction, a person normally undergoes what's called consolidation chemo to further wipe out any stray leukemia cells and to minimize the chances of relapse. Consolidation chemo actually involves even higher doses of the induction chemo drugs (yuck), but for shorter periods of time. It can consist of anywhere between 1 and 4 rounds, where each round takes about a month to recover from. Yeah, lame. Finally, maintenance chemo is done afterwards to further prevent a relapse from happening. The problem with all this chemo is that the effects on the body are cumulative, and your organs and marrow can suffer a lot. I had liver problems and other weird issues after the induction chemo, so anything we can do to reduce the exposure to all this toxicity is a good thing. Not to mention that chemotherapy itself can increase the chances of other types of cancer down the road. Bleh.

So the issue we're facing now is whether to do consolidation chemo before the transplant, or skip it and go into the transplant as soon as the lung infection has cleared up. The risk of not doing consolidation chemo is that I could relapse in the next few weeks, which would throw a wrench into the transplant plans yet again. Since it's going to take another few weeks to recover from the various lung infections and at least 2 weeks after that to prepare for transplant, there is enough time that a relapse is possible. Obviously if the donor takes off on a world tour then we'd be forced to do consolidation chemo. But since things are going well we should be able to go directly to the transplant. We're crossing our fingers that I can stay in remission long enough to get there.

The other scary thing is that after undergoing hardcore, intensive chemo and seeing what can happen to your body when it has no immune system, I'm definitely not feeling as cavalier and invincible about battling this cancer thing. Up until the induction chemo the therapy didn't seem like a big deal. I was still working, going in for chemo every month or so, getting the occasional transfusion, and trying not to let it rule my life. And for the most part it didn't. The hardcore induction chemo gave us a little bit of a reality check as to how tough it can be, and gives us an idea of what we're in for when we go to the transplant. I'm not used to getting infections and being sick, and apart from the cancer, I've never had any kind of organ problems or any other serious problems, not even a broken bone. So when your doctor says you have liver problems and lung infections and all kinds of other weird crap because you didn't have an immune system for a week, it's very sobering. After the transplant, not only will I be missing my immune system, but I'll be taking immunosuppressive drugs for several weeks to prevent the immune system from functioning so that the new stem cells don't attack my body. So we'll have to be really careful.

It's also scary to read blogs about other people going through similar experiences, and seeing how some are doing great but realizing that others are having serious complications. For example, last night I was reading about an amazingly upbeat and awesome 27 year old woman with leukemia who just recently had a transplant and is now in critical condition and on a respiratory device after developing a serious liver disease. They've pumped several *liters* of fluid from her lungs and are running all kinds of tests to see if any other organs like her heart are being affected. I've assumed I'll get through this because I'm young, but it's sobering to realize that there are a lot of other young people my age that *aren't* getting through it easily. Some are dying. In other words, this is serious business folks. But I'm taking the long-term approach and looking at what's on the horizon, not just what's there tomorrow. And I think I'll be ok.

On a positive note, I feel wonderful, apart from being a little weak since I lost a bit of muscle while in the hospital (my legs looked even skinner than normal when I got out). But I've been walking 2-3 miles a day so that's helping. My new taste buds are finally growing in, and they are *loving* every bit of food they can find! Yesterday I had a huge helping of enchiladas for lunch, then a sandwich in the afternoon, then a big steak in the evening. And I was still hungry! The protein is good for my body since it's still re-growing all the cells and tissue that got wiped out from the chemo. Go body!

So now I'm just happy to enjoy some time off. I've been officially away from work for 6 weeks now, and only in the last few days have I *finally* been able to enjoy myself a little bit. I feel that after the miserable time I spent in the hospital, I deserve some fun stever time for a little while :) Oh and I had my PICC line taken out which is *so* nice. No more saran wrap around the arm to keep it dry in the shower or having it itch like crazy when the skin is irritated. It's the calm before the storm right now. The next round of chemo, to prepare for the transplant, will be super hardcore. So I'm happy to just lounge around, enjoy the moment, and get myself psyched up for what's next.

That's it for now :)


Cindy said...

YAY!!! Fantastic news that you are in remission and can enjoy some normalcy for awhile. I can just imagine the shocked expression on your face when you saw that your platelets were up so high :) It's so nice that we can enjoy Christmas and hold off on the transplant until January-ish.

I hope the lung infection goes away soon.

And yay for enchiladas and good food.

Are you going to ride your scooter around to celebrate?? It's kinda cold, but... it's been awhile since you've ridden.

Brian said...

Wow, your platelets are in the superhuman range! Pretty soon you'll be wearing a cape and fighting crime. Go Steve!!!

obscurity said...

When I saw "Remission" ... I really wanted to sing Glass Houses or Icebreaker ... but then I kept my inner goth at bay.

OK. I'm glad to hear you are sounding so awesome. And I like that fact that you are not taking it for granted. It kinda reminds me of when ... back in the old days ... we'd work on a computer and then push the power button ... and get really excited when it turned on ... but then just be afraid it would just crash again. Dood, I feel pretty bad for comparing you to a computer.

The disconcerting thing is how sobering this experience has been for you. For the rest of us, we are suffering different types of liver trauma because it has been the OPPOSITE of sobering. Personally, I look forward to the day when we can switch that up!

George said...

I'm no Doctor... but I'm pretty certain you don't really NEED a liver.

This is fantastic news... seriously you lose me with all of these options. But it sounds like they are going to wipe out your immune system once again with chemo and then do the transplant right? So you kind of know the horrible effects of the chemo but you don't know the fun that may be graph vs host?? It all sounds like a trigonometric problem gone awry.

We are all rootig for you... like I've said before... how easy will the rest of life's mundanes be after this crazy ride?? Hang in there baby... I'm seeing you half way through. Wooooo!!!!

Joanne said...

Congrats Steve - Jason and I are so happy for you! We usually get updates from the Nic and Rachael, but it's nice to see the good news in your own words. :)