I can’t believe it’s already been this long but last Wednesday the 18th marked one full year since my cancer diagnosis. Between all of the chemotherapy to get me into remission, the bone marrow transplant, the twice weekly clinic visits, and now the relapse, it’s been quite the year.
I still have a long ways to go but I received good news on Friday that it looks like the the drug I’m on is working well and has knocked back the cancer in my bone marrow. I meet with my doctor tomorrow to get the full results of a bone marrow biopsy that I had on the 13th (results take a while) and what the future holds for me in terms of treatment. With any luck, the current treatment will be enough and I can finally return to work.
Things had been going extremely smoothly and uneventful since my bone marrow transplant in May, making it easy to procrastinate writing a post here on my blog with updates. No news is good news, right? Well unfortunately that’s changed.
The stem cell transplant went as expected including me spending most of May in the hospital as the doctors waited for my donor immune system to take root and start producing new white blood cells. There were side effects such as a sore mouth (you’d be surprised how much healing your mouth is doing on a regular basis) that required being hooked up to intravenous fluids and nutrients, but overall no real surprises. Just my body being put through the ringer.
I was discharged near the end of May and moved back in with my amazing mom who took over 3 months off work to be my caregiver. This is because I required 24/7 supervision in the case of complications such as a fever or graft-versus-host disease (GvHD). I was also extremely fatigued early on, feeling like I had done a full workout despite just sitting on the couch all day. My body was working hard on the inside!
Things improved steadily until the end of August when I started feeling weaker again. I was more easily getting out of breath and my heart would race more than usual. I had hoped it was just some GvHD or something as getting a little bit of it is actually a good sign as it means the new immune system is strong.
Unfortunately when they did the blood lab work at my next weekly clinic visit, they detected a high white blood cell count which signaled a return of my leukemia. Worse, further testing revealed that a mutation had occurred in the leukemia meaning that the medication I had been taking before my transplant was no longer as effective at treating my Philadelphia chromosome–positive (Ph+) acute lymphoblastic leukemia (ALL).
The relapse resulted in me being readmitted to the hospital for nearly two weeks earlier this month while they got the leukemia in check using the old medication (better than nothing) and dealt with some complications such as a bit of bleeding in my lungs.
Thankfully there’s a different medication that I’m now taking that is designed specifically for treating leukemia with this mutation. The crazy thing is that it apparently costs $65,000 a month according to my pharmacist but luckily my insurance knocks it down to only a $10 copay. Phew!
My understanding is that the hope is that with this new medication, my new immune system will be able to battle back and kill off the leukemia, putting me back into remission and back on the road to being considered cured. Initial blood labs indicate that this is trending in the right direction as my white blood cell count has dropped back to normal levels but I’ll know more over the coming weeks as I’ve only been on this new medication for less than a week.
If the medication isn’t as effective as desired, I’m told such things as getting a stem cell booster from my previous donor or even a transplant from a new donor could be on the table. Then there’s even the stuff that I don’t want to think about. For now though, it’s just a wait and see.
One good piece of news is despite being on an absolute ton of different medications, I’m actually feeling pretty good. I’m still physically weak due to extended hospital stays but mentally I’m pretty much all there (well, as much as before that is, heh). I’ve been slowly getting back into writing code in preparation for returning to work next month or so, assuming I don’t need to get admitted back into the hospital yet again.
The big thing that has kept me going through all of this though has been the amazing support and love from both my friends and coworkers. It really has helped keep my spirits up and I hope all of them know how much it has meant to me!
Great Friends Visiting Me In The Hospital Earlier This Month
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.
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 breath 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.