My cancer adventures continue starting tomorrow when I’m admitted to a local hospital in preparation for a bone marrow transplant. I’ll be receiving the stem cells from an unknown and unrelated donor as unfortunately neither of my sisters were a match.
Before I get the transplant however, they will be giving me yet more chemotherapy in an attempt to kill off any remaining cancer cells. After that they have to dose me with significant amounts of radiation split up over 4 days in order to kill off my existing bone marrow, making room for the donated cells. The radiation unfortunately can have some pretty serious long term side effects such as infertility but thankfully I don’t want kids.
May 5th will be the big day, the day when I receive the new stem cells via an IV. I’m told it’ll be uneventful but that I’ll feel like crap for weeks afterwards due to the chemo and radiation catching up with me, plus all of the drugs that they’ll have me on to suppress my new immune system so that it can get used to my body. I’ll be spending most of May in the hospital recovering.
Once I get out, I’ll still have a long journey ahead of me. For the 100 days following my release from the hospital, I’ll require 24/7 supervision (I can never be left alone). My amazing mom has stepped up to do this for me and to take me to my multiple doctor visits each week. As I’ll still have a compromised immune system, I’ll have to be really careful and there will be many things that I won’t be able to do, even things as simple as preparing my own meals. I’ll have to wear a mask whenever I go outside and I’ll have to avoid large groups.
On the bright side though, all of this should be the beginning of the end of my main cancer treatment. Life should mostly return to normal by this fall or next year, although there will be lasting impacts to me for the rest of my life. For example I’ll have to avoid unprotected sun exposure as much as possible as sunburns could trigger a graft-versus-host occurrence, even years and years down the road. That certainly sucks as one of my favorite things to do is to drive my convertible but having to deal with these complications is much better than the cancer alternative!
Apologies for the delay since my last post. I know many of you have been asking me for an update.
The biggest news is that I’m now in remission! That means that the latest bone marrow biopsy I had detected no traces leukemia. It doesn’t mean that I’m completely cancer free however and I need to keep receiving chemotherapy treatments every few weeks in order to prevent it from coming back. More on that in a moment however.
The other big news is that after 45 days in the hospital, I was finally able to check out on December 3rd (yes, I’ve been slacking on writing this post). I’ve been staying with my mom because my long hospital stay took it’s toll on me in the form of losing about 30 pounds, including a lot of muscle mass. Even simple things like going up stairs requires extra effort and my townhouse has over 30 stairs. I’m also not confident I can drive quite yet so it’s just easier to be staying with family for the time being, especially with all of the snow we’ve been getting here in Portland lately.
Unfortunately in less happy news, my leave from the hospital is temporary. Tomorrow I check back in for 5 days for the additional chemotherapy that I mentioned earlier, something that I have to repeat every 2-3 weeks. Hopefully it won’t leave me feeling too bad.
Additionally in a few months I will need to be at another local hospital for about 30 days in order to receive a bone marrow transplant. This will be a major event due to the chance of rejection and other potential complications. Thankfully that’s a ways off however.
So while a big milestone is behind me, the road ahead of me is still long and challenging. Fuck cancer.
34 days and I’m still in the hospital. It’s boring, but necessary for my treatment unfortunately. Lots of bad days, especially this past week, but some aren’t quite as bad as the rest.
Today I had a crazy procedure where they got a biopsy of my liver by going through my jugular vein so that in case I bled (I bleed easily due to low platelet count), it was into my bloodstream and not into my body. It was all painless of course due to local numbing agents, but still very weird.
Tomorrow I get yet more chemotherapy drugs which will probably make me feel like crap but it is what it is.
I had a bone marrow biopsy done on Tuesday and the results came back today saying that the current chemotherapy treatment hasn’t been as effective as hoped. I came into the hospital at about 95% infection and my oncologist had hoped to see it down to as low as 5% now (they’re aggressively treating it) but unfortunately it’s still around 50%.
While not good news, it’s not really bad news either. It’s just news and means a change in chemo regiment. Rather than my weekly chemo treatments, I’ll be getting different chemo drugs starting tomorrow for 3 days and then mostly nothing for 3 weeks. These new drugs are stronger and have more potential side effects but like before, the nurses can preemptively counter and monitor those.
Unfortunately this also means at least an additional week in the hospital on top of the two weeks I already had to go. That’s probably the part that sucks the most honestly. It sucks being cooped up in the hospital, even with Netflix and video games. The food is fine, but I’m getting sick of eating the same things and there’s rules about outside foods due to risk of infection.
One day at a time though. 🙂
Today marks the 21st day of being in the hospital for leukemia. I’m feeling much better than that week before I checked into the ER but the weekly chemo drugs they give me can really zap my energy. Thankfully they pre-drug me to counter the effects, but there’s only so much you can do to keep yourself busy.
I’ve been watching lots of TV and thanks to about 15 amazing friends, I have a gaming laptop and HTC Vive VR headset to keep me busy when I have the energy and mental togetherness.
Lots of awesome friends and family have been making sure I have everything I need, so really it’s just waiting game based on test results. If all goes well, I could be getting out of here in a little more than 2 weeks! Fingers crossed.
Leukemia. Certainly not one of the words you expect to hear from your doctor when he’s calling about blood test results and telling you to get to the ER.
I hadn’t been feeling great since about October 10th — no appetite, a light fever of about 100F, and was easily getting out of breathe due to light physical exertion. But I also wasn’t stuck in bed or on the couch the whole time, so I figured I was just fighting some cold or flu.
After over a week of not feeling great though, I decided to see my regular doctor this past Tuesday the 18th. He had bloodwork done that morning and called me late that evening with the results, telling me to get to the ER immediately. I believe he said a normal white blood cell count while fighting an infection might be something like 12,000 while mine was 94,000 — the highest he had ever seen in a patient. There were also immature white blood cells in my blood stream and other signs of serious trouble.
Now, after having had lots of tests done, including a fairly painful bone marrow biopsy, it’s confirmed that it’s leukemia, specifically acute lymphoblastic leukemia. I start chemo today and I’ll be stuck in the hospital for 4-6 weeks. They say most people actually start to feel better despite the drugs although I will eventually be losing all of my hair. It’ll grow back, but that’s going to be quite the experience.
My understanding is once I get out of the hospital, I’ll still be coming here a few times a week for about 6 months for further care and it’ll be possible that I’m feeling well enough to both drive myself and go back to work. Even after that it’ll be another 3 years of treatment.
The details are of course still a bit fuzzy since it’s early on and more tests still need to come back, but they seem very optimistic about my long term chances.
It’s been pretty surreal to go from feeling perfectly normal to starting chemo in a period of less than 2 weeks.
This is going to be quite the journey…