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!
Thank you for the update Viper. You are often in my thoughts! You will drive again!
OMG.. I am so sad you are having to go thru all of this.
В такива моменти е времето в което трябва да преосмисляш , какво всъщност желаеш? Постигайки или до стигайки” от ” “за” и “на ” това което искаш .
Но в крайна сметка е по добре да се развиваме като бъдем създатели на желанието си да бъдеш щастлив.
> a hole in my skull for an Ommaya reservoir
Some say he’s more machine than man… 😉
> That hope is what’s keeping me together
I know there’s a lot of hope in your corner coming from all over the world: more than enough to keep your supply topped off even on the low days.
Thanks for sharing this update!
Oh, Alex. Hang in there. I hope your vision continues to get sharper and sharper. Sending lots of love. <3
Thanks for the update Alex. Glad that your vision is improving and you’re able to hit the keyboard again. Stay strong, we’re thinking of you!
Take care man!
Hope all will be well soon Alex.
Ugggh that has to be incredibly frustrating! I’m glad you’ve found something that’s letting you see again. I can’t imagine you don’t being able to drive, either!
Sending best wishes and support from South Africa! Keep fighting!
Hopefully, you will be totally fine in no time. Keep fighting mate.
I was so happy to see you today! Glad you’re improving, even if it is slowly.
Hang in there, Alex! We’re thinking of you.
Hope you recover soon from this setback. I can see that not being able to drive must be tough. All the best.
So sorry to hear about your complications Alex. I hope your vision keeps on improving.
Get well Alex and may the Force be with you young Jedi fighter!