[hutchibk]

Where I've been for a leetle while...

I was checked in on Dec 15 for surgery (just after SABCS)… out on Dec 19. I had a craniotomy, otherwise known as brain surgery (yikes?), on a small part of the right cerebellum area. But as always, no symptoms at all. We saw it on my 3 month MRI. We had to remove the necrosis because it had started to spread and it threatened the 4th ventricle. It turned out to be a 1/2 dollar size hole in my right cerebellum covered w/ a titanium mesh and stitched up like Frankenstein. About golf ball size scar tissue/necrosis underneath had to be removed (no tumor, yay!). That's the great news... all necrosis. And, very similar to the surgery Steph had a few years ago.

We thought everything was going really well, as I was checked out of the hospital on Dec 19. I was about to have Christmas dinner and gift exchange with my family on Weds Dec 21 at about 7:45pm at my sister in law's house, when suddenly I decided I should lay down first - which is totally weird for me. So I went upstairs to lay down for a moment with a growing band of headache around my head. Within about and hour and a half, I couldn't walk, I had a monster headache, I couldn't look at any light (aversion), the room was spinning uncontrollably, I was throwing up (from my head, not nausea in my belly), and I was in ER at around 10:30pm with the surgeon who had performed the first surgery, Dr Patel, calling ER, telling them to take me right away, get me CTed and prep the OR. He IS an angel and he is spectacular. By 1:45am I was under anesthesia on the OR table getting another 5 hour surgery to stop bleeding and get Platelets under control (they were down to 55,000 which shouldn't be considered too low at all, but it all played into the bigger picture, I think). He sat with Mark talking another 15 minutes after ER surgery was over at 7am-ish on Thurs morning. He was dog tired, as was Mark, but I had made it through. I was in ICU for 3 days.

Then I was moved up to a regular room on the 3rd floor. They kept me there for 12 days, watching me so that it didn't happen again… I was in hospital for Christmas and New Year's Eve. I didn't care AT ALL… whatever the doctors (neurosurgeons) wanted, the doctors got. They stopped in and talked to me every day. I was very well watched and cared for. Oh, and believe me, you CANNOT sleep or get any rest in a hospital. Hahaha. 12 days total.

We were watching for healing and clotting of the area. I was CTed every other day to keep an eye on the area of surgery, and when my Platelets have fallen below 100,000, transfusions have been given. Platelets for me seem to fall because 1. the clinical trial for TDM1 I go to in Denver can cause that in some folks, and 2. because I have had high dose (IMRT) radiation to that area, twice, causing it to be a bugger to heal… and the 4th ventricle in the brain was not happy at all.

I was finally sent home on Jan 2… hallelujah! And I am just taking it slow and low. My Frankenstein scar in the back is about 4 inches long, and the neurosurgeon is not nearly as bad a barber as he said he was… We are on a one month watch/monitor for healing. The double radiation to the area makes it heal much slower. I am now in the hands of my local Oncologist who monitors my Platelets every other day to see if I need an transfusion, and if so, we send me to the hospital across the street where I get them transfused, until the one month is up and we know I am healed. One month will be up this Friday.

My platelets have not been as high above 100,000 as they had been… they have actually hovered around 85-90,000 for the last week. I am not transfused with 2 bags anymore as I had been in the hospital, just one bag now that I am an outpatient.

So, I am doing extremely well, I am glad to be healing, and that the "offensive material" is out of the brain! The only conundrum at this point is: 1. am I becoming 'refractory' to the Platelets? That can happen when your bone marrow starts to create antibodies that don't play well with the transfused Platelets, and it's not reversible… or 2. is it just a product of TDM1 causing my Platelets to drop a little as they are inclined to do? I did fly in and out of Denver on Monday Jan 9 to get my TDM1 treatment… or 3. is it a combination of the two?

That is a question for the ages that may not be easy to answer, but we know I am healing and it should NOT ever happen again… so there you have it.

That's where I've been... kinda quiet and had a few things on my mind, pun intended...