After 43 hellish days and nights, I was released from the City of Hope’s Helford Hospital last week. I left my “bubble” twice during that time, once for a CT scan and once for a bronchoscopy (I started my stay with a lung infection/pneumonia, so they ran a tube down into my lung to check it out and take a biopsy). I still love COH, but being in the hospital under strict sterile conditions is not my idea of a par tay. My family and some friends made it quite a bit more bearable by loading my room up with horses (since my main treatment was ATG, which is a horse-derived serum of anti bodies). My dad made an R-rated calendar/game that was up on the wall and we played every day. Even the nurses got involved. Only my immediate family was allowed to visit, and they made my stay so much better by being there every single day! Rex made his way up to Duarte between SAE pledge duties, such as delivering cigs and JD to actives’ apartments and scrubbing the house kitchen.
My homecoming was not as glorious as I had hoped for. The welcome home sign was wonderful, but as I got out of the car, my weakened legs gave way and I fell on the driveway, scraping my knee. I hope no one was watching, because it was not a smooth move at all. Once I settled in to my home bubble, I developed a hideous rash all over my body that was (and still is) quite grotesque. Sleeping was almost non-existent. All the meds I was given via IV in the hospital I was now expected to take in pill form, and this horrific f-ed up combo of 14 medications, which now had to make their way through my tummy made me incredibly barfy and nauseous. In the meantime, my doc has adjusted some of the dosages, so I am not feeling nearly as bad. Staying on top of these meds and the dosages and the timing of them is a challenge for me and my diminished intelligence – Does anyone know if there is a book out there called Medication Dosage for the Complete Idiot Who Has Lost all Mental Capacity? It kinda sucks because I still can have no visitors and I am still on an anti-bacteria diet.
Another medication was added to my list, which is an anti-fungal given via IV every evening by Nurse Todd. Each dose comes in a nifty little self-contained pump, which he hooks up to my PICC line. After about an hour, all of the liquid has been pumped into my veins and he unhooks me.
I am visiting Dr. P at City of Hope twice a week now, where he checks me out and adjusts my meds, gives me a blood test, and orders X-rays and blood and platelet transfusions. He wants to give the ATG until November 16 to start increasing my blood counts. If they are not trending upwards by then, we will start planning the bone marrow transplant with brother Leason as my donor. The transplant will take place around the middle of December and I’ll be in the hospital for 4-10 weeks. The procedure starts with one week of heavy duty chemo to rid my body of all my unhealthy blood cells and to shut down my immunity system. Then I’ll receive my new bone marrow, which miraculously knows to go into my bones and start producing healthy bone marrow and blood cells. This is called grafting and I’ll stay in the hospital until this occurs and I have no infections or other complications.
So I’m a pretty interesting specimen these days. I did not say pretty. I said pretty interesting. I have skinny bird legs from lying in a hospital bed for 43 days. The meds have given me a 7 month pregnancy belly. FUSUOLS (F-ed Up Super Ugly Old Lady Skin) is in full swing. My rash and accompanying scaly skin add a nice enhancement, as does my baseball sized hematoma that still sits under my muscle biopsy incision site. My left leg looks like I have two knees. And we can’t forget my oh-so-attractive mutton chops and mustachio! I’m thinking about starting some dreads on my facial hair – could be a cool look, right?
If and when I go in for my transplant, I am going to really miss all the nurses who took such good care of me during my stay. Two of my favorites were Jaclyn and Steph.
I want to apologize for not acknowledging all of the well wishes my friends and family have sent my way. I have felt so tired, weak and nauseous that I have not been able to stay on top of that. Please know that I appreciate every little thing you’ve done!