Day +39

Thirty-nine days ago I had my BMT (Bone Marrow Transplant).  It's been a horrific journey.  I feel for the children that have to go through this process to heal.  I have been in this great hospital for 49 days and absolutely love my nurses.  I have made some great friends here.  They have become my family.  They care so diligently for me and hold my hand when I am throwing up in the middle of the night or needing to get an injection. 

Since my last entry, a lot has happened. 
I used to have a catheter that was stitched into the right side of my chest. It was tunneled under my skin to my jugular vein.  This is the line in which I received my chemo and marrow. I ended up getting an infection in that line and they had to pull it. And I mean, literally PULL it out.  It was very traumatic for me.  Then they had to put in an IV line, which ended up burning every time they put meds through it.  Then the vein ended up hardening.  Three days after that, they put in a picc line into my left arm. (Yes, I am bald too!)

After that my hands began to show signs of a rash and swell like crazy.  It turns out that I have GVHD (Graft vs. Host Disease).  This is where my new immune system begins to regenerate and decided that it's in the wrong body.  My insides swelled up with ulcers and sores, bathrooming becomes an issue, and my hands were a mess...peeling and itching.  They had to put me on steroids to suppress my system.  I had my first colonoscopy and was taken off food.  All of my nutrition comes to me via my IV so my insides could heal.  The steroids made me hungry and blew up my sugars.  So insulin shots are every few hours.  I'm a little bruised on my arms.

Because I have GVHD, I will never be able to sit in the sun. I guess that vacation to Hawaii is out.  Good thing I love Seattle! 

Three days ago they ok'd me for clear liquids and I can eat popscicles and clear broths. (Boring!) Then yesterday they ok'd me for full clear liquids, which means I can add cream of wheat and cream of rice to my diet (even more boring!). 

But for the good news!  They are discharging me on Monday (Day +41).  Hooray.  I will still be on a very limited diet and hauling a wheeling suit case full of my IV nutrition with my where ever I go, but at least I can sit on a couch in our rental apartment! I have to wear a mask when ever I leave the apartment or hospital room. So people stare, but at least I'm alive!

I still can't go home until after day +100 which (I haven't counted) will be close to Christmas Time. That seems like forever...
 

Day +14

I finally feel up to posting an update. Scraping up the energy is close to impossible.

Pre-Transplant:
On Sept. 10th, I started a full week of total body radiation.  Each round of radiation, lasted 8 minutes...slowly sapping my energy.  There were a total of 11 rounds. I could feel the changes in my skin and taste buds.

On Saturday, Sept. 15th, I was admitted to Standford Hospitals E1 Cancer floor. After settling in, round one of of intense chemotherapy began.  Sunday was the same.

Monday was a welcomed break...also known as the day that all of the chemo and radiation catch up to you.

Tuesday, Sept. 18 was transplant day! My second birthday.  It was actually quite uneventful.  It similar to a blood transfusion.  It's called Day Zero. It was amazing and I cried.  I felt so overwhelmingly thankful to be here,

Wednesday, Sept. 19 (AKA Day +1)
I don't really remember much. But here is what has happened between then and today.
I haven't swallowed anything in at least 8 days. No food.  No Drink.  I'm on IV Nutrition.
My mouth, throat, and entire digestive system is incredibly full of ulcers and sores. (making me look like a chipmunk with swollen cheeks!) My body has no way to heal them or fight them off...we are waiting for my new immune system begin to grow. They say any day now. I average about 2 blood or platelet transfusions a day.....so thank you to those that donate blood!  I've been in isolation, there's been a lot of throwing up, and going to the bathroom. It's ALOT of IV liquids. At least I know my kidney and bladder are working.  My hair has officially fallen out and I am exhausted everyday.

But today is Oct. 2.  I excited to have made it to October.  Today is Day +14.