November 27, 2019 - Bad News All Around

Well where can I start off with this one. I'm currently in the hospital with a brain bleed, double pneumonia, and barely any ability to walk, talk or eat.

On Friday Nov 15 I had an appointment with doctor Bixby that I never made it to. Leaving the house I started to feel really dizzy and out of breath. I grabbed on to the fence to steady myself. I went down to the ground and we ended up calling 911 and being taken to Beaumont. While I was there we did several tests which revealed the subdural hematoma (brain bleed). We had already talked about it but by this point it was a definite we needed to go to UofM.

After about 8-10 hours at Beaumont, a scary bumpy ride in an ambulance, and and 2-4 hours at UofM ER we finally made it to the neurosurgery ICU. During all this time I never was allowed to get up and walk. It was always stretcher to stretcher transfers  and using the bed pan.

Then Sunday night when I was moving from the ICU to regular neurosurgery service I was asked to walk a couple steps. It was excruciatingly hard.

I spent a few nights in the neurosurgery service and started getting up to a bedside commode during that time, but I had to call for a nurse every time to help me up, I wasn't allowed up alone.

After a few days in the neurosurgery service they felt more comfortable about my brain bleed healing and moved me over to a general med / hematology service where they can better deal with my clotting/lack of clotting issues and blood transfusion needs.

So now I've been on this service for about a week. I was hoping to get out to go to Thanksgiving dinner but it's not looking good the doctor wont even give me like a 3 hour pass to go out. They said I'm still too unsteady and could have life threatening complications if I were to fall while out.

Physical therapy has been coming to work with me occasionally to help me relearn walking and build some strength. I am trying to get into a rehab program through the hospital that is intense physical therapy. 4x per day for 45 mins each session. I could be going there as soon as Monday if my blood transfusion needs can get down to only 1x per day or less. I need to get down to 2x per week to go home.

November 8, 2019 - Some concerning developments

Since my last post, my overall White Blood Cell (WBC) count has started to skyrocket, with the majority percentage of those WBCs being blasts (leukemia cells). Back when I wrote my last blog my total WBC was 8.6, still within the "normal" range of 4-10 with a blast percentage of 44%. As of today my total WBC is 43.7 and blasts of 72.6%.

When my total WBC first started to creep up out of the normal range my PA, Heather, came to talk to me on Monday Nov 4 about the possibility of starting on a chemo pill called Hydroxurea. This drug is not used to treat my type of leukemia. It is known to help reduce total WBC in AML but it is not expected to reduce the blast percentage or cause remission. The reason to consider starting this drug is that as the WBC count rises above 50 you become at high risk for strokes and heart attacks because the over abundance of WBC causes the blood to thicken. 

Since we are getting close to the 50 mark Dr. Bixby wants me to start the pill today. It will be 2 500mg pills per day, one in the morning and one at night. I'm a little afraid of the side effects reducing the little bit of quality of life I've finally regained. It will be expected to drop my counts significantly so that means more frequent blood transfusions, higher risk of infection, nausea, mouth sores, etc. 

In other news, just as my eye is almost completely healed my gums have started to become increasingly swollen. Sometimes the pressure is so great from the swelling that it feels like my teeth are going to fall out and it hurts to chew. There is also one really bad section in the back right on top where the gums have split open and keeps bleeding due to my low platelets. It forms these long, stringy blood clots that makes it feel like I have something stuck in my tooth. Eventually the clot breaks loose and my mouth starts bleeding again. It is annoying and gross to just have a mouth almost always filled with blood. There is also a section of swollen gums in the bottom right near my "eye" teeth that is compressing a nerve causing me to constantly feel like I just got shot up with lidocaine. Dr Bixby said he believes my gum issues are directly related to the increase in blasts/WBC and is hoping the Hydroxurea will help with that too, although it could end up making things worse because one of the side effects are mouth sores like I had on the trial drug I was on previously. 

I'm also becoming more bruised. I had Alan take a video of my legs that I'm debating posting. Bruises are easy to hide with clothes so a lot of people comment on how "good" it looks like I'm doing but no one can see that my body is a disaster. 

On another happier note we did take what was probably (but hopefully not 🤞) my final vacation this week. We left for Orlando on Monday after my blood transfusions and hit Universal on Tuesday, Epcot and their Food and Wine fest Wednesday, and Animal kingdom Thursday. Then we had to be on a shuttle bus from our hotel to the airport at 2:55 am Friday morning and drove straight to UofM after for my blood draw and transfusions. I ended up needing both platelets and blood so it's been a long day here. After my appointment I also had to stop by radiology to get an xray on my left hand because I injured it pretty badly on our trip. Hopefully it is just sprained not broken. 

Thanks for reading. Until next time...