It's medical update time! Strap in cuz it's gonna be a long one....
In mid June, I found myself with a pretty serious UTI. I spent 14 days on antibiotics because my immune system isn't 100%. It's never going to be since I have post bone marrow transplant Evans Syndrome. Evans Syndrome is where instead of fighting an infection at 100% some of my immune system will decide to target parts of my blood instead. This can cause lowness in all parts of my blood & lymphonic system....which happened.
In early July, I did blood work & we found I was pretty low on everything except white blood cells which were well above the normal range so since I beat the infection we started immune suppression processes to stop Evans from its attack. We determined that I needed a blood transfusion, but they wanted me to finish up steroids first so that my immune system didn't target the donor blood & cause a worse problem.
Fast forward to this past Wednesday, I have 6 days of steroids left. I wake up with pretty intense sharp pain in my lower back. I notified medical. Thursday same thing, & more blood work reveals my white count is still super high. They increased the dose of steroids & make me an appointment for the following Thursday to transfuse. As the day progresses it gets worse so they decide to have me come in Friday to check out my back.
I have spinal stenosis we discovered in 2014, this means my spinal column narrows in 2 places & where it was hurting was in the lower back where one of these narrow areas is.... roughly 2 inches above my tailbone. So they really wanted to take a look since it started hurting so suddenly & it was a sharp pinching pain. They figured since my white cell count was high there might be a clumping situation there so we decided it was worth the risk to go ahead and transfusion me on Friday.
So I went in Friday afternoon...
One thing I've been very clear on since my bone marrow transplant is that I am Leukemia free not cancer free. I have secondary spinal sarcoma that began in 2018 as a result of my leukemia treatments. Tumors just grow on my spine sometimes & we have to intervene. I had them scanned in April & they were very small. Medical projected I would need intervention in late 2026. The good news is they still are very small! They have barely grown at all! This is great news, but there's a problem.
My insanely high white cell count did crowd that area & caused a shift in one of the tumors. Even though it's small, it's wedged between two nerves & that's what is causing my intense back pain. Yikes! They can't use the laser in this situation soooo
I'm having CART (T-cell therapy) way sooner than intended. They took some T-cells from me Friday and a lab will modify them to attack my spine tumors! I'll do two weeks of targeted chemotherapy to prepare & then will have those T-cells put back in & if everything goes well those cells will attack all 4 of my tumors including the problem one.
So yeah not a fun August ahead for me, & I'm very much not in a great mood about this. There's a lot of stress financially at Casa De Weeb right now (just like most everyone else I know) & this medical drama of mine isn't helping.
So right now I'm waiting for my mail order pharmacy to deliver my chemo drugs & I'll update everyone once this process actually starts. The good news is these drugs will be by mouth so no needles on my arms until T-cell time! Gotta find the bright spots. Oh & also while there will be side effects & I will feel like garbage for the entire process (both chemo and the T-cell infusions) hair loss isn't an issue. It will slow the growth of my hair & nails but I'll keep my hair which is amazing cuz I love my hair!
As always thanks for your love & support. If you have questions please post them here. Some of Team Kattobingu has left Zuccville & this post is too long for other options so you are free to let those people know.
Kattobingu forever!