To treat this, I will be taking a very specialized drug called Blinatumomab. It’s administered as a continuous 28 day drip which means I’ll have to carry around a portable IV pump. I’ll then get a 2 week break before a second 28 day infusion. If I’m disconnected from the pump for more than 4 hours, I may have to start the whole 28 day cycle over again. What a pain.
This Sunday I’ll be admitted to the hospital for 3 or 4 days of monitoring to make sure that I don’t have any negative reactions to the medication.
As for my vision issues, depressingly there hasn’t really been any improvement. If anything I’ve gotten more blind spots that make it hard to see things that I’m directly looking at.
I’ve been unable to work or drive, both of which I desperately want to do. I’m having a really tough time with the thoughts of things never improving past where they are now.
Unfortunately my bad luck and health complications continue. Last week was a roller coaster of events.
My ommaya reservoir, used to access my spinal fluid for samples and chemo, clogged because of frequent use and it being installed ever so slightly in the wrong place. So on Monday, they opened my scalp back up and replaced it with a fresh reservoir. Everything went perfectly fine, or so I thought, and I went home Tuesday morning after an overnight observation stay at the hospital.
On Wednesday morning, I woke up with an absolutely horrible headache. I took some strong prescription pain killers but they didn’t help and the throbbing headache got worse. Eventually it got unbearably bad and I begged to be taken to the ER. I was the worst headache I’ve ever had and probably a 9 or 10 out of 10 on the pain scale. At the hospital I was able to get some IV pain medication which is stronger and faster acting and that helped quite a bit.
They determined my headaches were being caused by meningitis which in turn was caused by a bacterial infection in my brain, almost certainly a complication of the surgery. To make treatment easier and more effective, they decided to remove the reservoir that they had just put in only a few days before. Treatment of the infection with IV antibiotics eventually cut down and stopped the headaches, but I have to continue the antibiotics at home for about another week.
It seems the complications and issues never stop for me, but unlike the vision issues, at least this one wasn’t anything permanent.
While the blurriness has lessened significantly, from an estimated 20/400 to 20/40, I still have some quite significant vision issues. Infact I was surprised to learn that my doctor didn’t expect me to recover as well as I have — he had been quite concerned the first time he saw me.
After some research, he currently thinks that all of this was caused by an very rare side effect of an antibiotic I had been taking for over a year. It’s purpose was prevent me from catching a certain type of pneumonia due to my weakened immune system. The discovery of odd-looking white blood cells (aka probably cancer) in my spinal fluid was likely just coincidental. The antibiotic caused pressure in my optical nerves, killing off some of the cells contained within. We are born with more than we need so the hope is that things will continue to improve over as long as the upcoming year, but real damage was done and that’s permanent and disappointing.
The best way I can think of to describe my current vision is that my eyes are now using crappy data cables. The world seems lower “resolution” (I have to use bigger fonts on digital devices) and the contrast and brightness of things has gone down. I have trouble telling some similar colors apart, but that varies by day and time. I had to change the colors in my code editors and I can no longer make out the individual pixels on a screen, and that really sucks.
Additionally I currently have a blind spot sort of shaped like a C in the middle of my right eye. My brain is learning to compensate for it including switching which eye is my dominate one, but it’s unlikely that the blindspot will heal. But who knows? Maybe I’ll have some good luck to counter the previous horrendous luck that I’ve had.
So overall I guess I’m lucky that things have improved as well as they have, but the fact that things are unlikely to return to perfect like they were before is hugely crushing. At the end of the day though, being able to drive again at some point is all I really want and that isn’t looking unlikely. A huge relief!
Today marks the one year anniversary of my first bone marrow transplant. Despite a relapse last fall, things had actually been going really well. A bone marrow biopsy came back completely clean as expected, all of my blood counts were looking great, and I was finally feeling well enough that I was getting ready to move back home to my own place after living with my mom for over a year. Then things went to shit.
In mid-April, the vision in my left eye started getting a little blurry. In less than a week, both of my eyes went super blurry to the point that I couldn’t use my phone or laptop. I saw an eye doctor who scheduled an urgent MRI that same day. The MRI revealed pressure on the back of my eye and optic nerve, but no pressure on my brain thankfully. Eye surgery was scheduled for the next day to cut a hole in my optic nerve to relieve the pressure. Unfortunately it didn’t help at all.
Around the same time, test results came back from my spinal fluid showing the existence of oddly shaped white blood cells (likely leukemia). This was a first for me since, although I had received preventative chemo into my spinal fluid, it had remained clean previously.
Doctors then and now still don’t know what is causing the vision issues, but their guess is it is somehow related to the leukemia found in my spinal fluid. They’ve been treating it via twice-weekly lumbar punctures in which they inject chemo drugs, but those are a bit painful and each one carries a small risk of infection. So as an alternative to those punctures, earlier this week I had surgery to cut a hole in my skull for an Ommaya reservoir for easier access to my spinal fluid.
My latest spinal fluid test came back clean so the chemo is working, but they’ll continue giving me the chemo for a while to make sure it stays clean. The access reservoir will still be worth it in the long run.
The best news is that treatment of my spinal fluid seems to be having a positive effect on my vision. I still have some vision loss in the center of my right eye, but the overall blurriness is slowly going down. I’m actually managing to type this post myself instead of having to transcribe it to a family member like I was doing with email previously. I still can’t drive or work though which is really tough.
Hopefully my vision continues to improve and eventually returns to normal. That hope is what’s keeping me together right now. I can’t imagine life without being able to drive!
Apologies for the long overdue update post. I’ve been procrastinating hard on this one.
Way back on November 22nd, the day before Thanksgiving, I received a second bone marrow transplant in order to help treat my leukemia relapse. The stem cells were from the same donor as my first transplant but thankfully the procedure was nothing like it. This time it was simply being hooked up to an IV bag for a bit and then having my vitals monitored for a while to make sure I didn’t have any issues.
I’m very happy to report that it was a complete success and all tests have come back as completely negative for leukemia! As a side effect of the transplant however, I’ve been having some Graft-Versus-Host Disease (GVHD) meaning my donor immune system has been attacking me because technically I’m a foreign body to it despite the close match. This has mainly resulted in a rash across a lot of my body and my mouth being sore. I’m on some steroids now though to treat that and things are improving. The one good thing about GVHD though is that people who get it have higher long-term success rates because if the donor immune system is attacking me, then it’s also likely attacking any leftover cancer as well. I didn’t get any GVHD after the first transplant, which could have been part of the reason that I had the relapse.
The second transplant has also increased the amount of blood products that my body is making meaning that I’m no longer anemic. I don’t easily get out of breath by just doing things like taking a shower or going for a short walk. My heart rate is also way down, nearly back to normal. For a while, my resting heart rate was stupidly high as my heart worked hard to move oxygen around my body.
I’m still neutropenic though which means my white blood cell count is below normal and I’m more prone to infection. So I still can’t eat out at a restaurant or be around large groups of unknown people without wearing a mask. It means I’ve had to miss a couple work meetups but hopefully my counts return to normal soon. I’m anxious to be able to eat at my favorite places with friends!
I’m also starting to recover physically from everything and getting stronger by the day. I was on some fairly high dose steroids for a while and it completely wrecked my major muscles, such as those in my legs. Even things like climbing stairs required effort and worst of all, I’m still not able to drive a car with a clutch pedal!
I resumed working in December. My employer, Automattic, has been absolutely amazing throughout all of this and really has strengthened my desire to never work anywhere else. The support I received from all of my coworkers was overwhelming and really helped, especially on some of those tough days. They really are like a family to me.
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.