Whelp, my latest Bcr-Abl blood test came back slightly positive for leukemia again. This means at least another round of the 28 day infusion of specialized medication that makes me feel like absolute crap. Hopefully I’m able to continue to work despite the fatigue.
I also had an appointment with my opthoneurologist (eye doctor) on Thursday. The good news is that my vision hasn’t really gotten worse and no further damage is being done, but the bad news is that the damage was done and it’s permanent. Things aren’t likely to get worse, but they also won’t get better.
Lots of crappy news, but it is what it is I guess. Nothing I can do about it, so not worth worrying about it much.
Last Thursday, October 18th, marked the two year anniversary of my leukemia diagnosis. While I’m finally clear of cancer , I certainly didn’t expect it to take this long. But it’s also weird because it hasn’t seemed that long. My whole life was put on pause and I moved in with my mom. I haven’t slept at my place since being diagnosed and I have barely done any of the things with friends that I would normally do. No summers filled with weekend drives. No autocross with the Viper and Corvette clubs. All of the things that marked the passage of the seasons and time.
Thankfully I’m feeling normal-ish now and can get back to my life somewhat. I’m working and finally hanging out with friends again. Unfortunately due to my vision issues though, I don’t know if I’ll ever be able to be the driver on a spirited drive through the country with friends again. I’m forced to be a passenger which really sucks. The same likely goes for autocross. Hopefully one day they’ll figure out how to repair optic nerves.
Last week I was told the great news that I’m once again cancer free! This marks the third time I’ve heard this news after my initial diagnosis and then my relapse.
The Blinatumomab did its job after two 28 day home infusions, but it made me feel absolutely horrible in the process. Extreme fatigue, nausea, and more. Thankfully pretty much as soon as I was disconnected from it, all of that went away and I’m back to my new normal. I lost a ton of muscle mass during all of this so things like stairs are still hard but I’m getting there.
Additionally I’m in the process of returning to work. My vision issues are still a huge problem however. I have to use larger text and I still haven’t driven since about April.
Still, it feels good to be back to my normal-ish self. Let’s just hope I stay this way this time!
Today marked the completion of my 34th trip around the sun.
I spent the day at home due to fatigue and just generally not feeling great due to this latest IV medication I’m on. One of my sisters was able to make it down from near Seattle though which was a cool surprise!
Here’s hoping my health issues are behind me when 35 rolls around. I certainly didn’t expect to still be dealing with this crap at this point.
I really can’t catch a break, can I?
My latest BCR-ABL blood test that detects my cancer’s genetic mutation came back ever so slightly positive (like 0.01%). This isn’t a relapse but rather just some pesky cancer cells that refuse to take a hint.
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.
Can I be done now please?
I had a followup with my neuro-ophthalmologist yesterday to see how my vision was improving after the issues I started having last month. I’ve tried to be optimistic and stay positive since first getting sick, but this was a tough one.
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.