Day 82

I know we promised some good news today, but things didn't turn out quite the way that we had anticipated. We had a meeting at the stem cell clinic, and it was an opportunity to meet my new transplant doctor. All of the stem cell doctors met to discuss my case and he relayed what they had concluded. Unfortunately, we are still tangled up in the insurance debacle. Please be patient, and we may be able to share some good news depending on the outcome of some things. It's frustrating, I know, but imagine how I feel.

I'm going to be going into the hospital today for round 5 of chemo. I'll admit that I can feel a tantrum brewing, because I don't want to go back into the hospital. I started going stir crazy in round 4. It's just that you go from living a somewhat normal existence, all things considered, and then you go to wearing a backless gown, eating off of a restricted menu, with people coming in to check on you every two hours 24 hours a day. I've had a nurse's assistant wake me up at 4AM to weigh me. Imagine waking up and being faced with a scale, with the expectation that you're coordinated enough to get out of a bed with guard rails and manage to stand on a platform for 60 seconds while your weight is being taken. The only plus that I've discovered about having your weight taken in the wee hours of the morning is that you don't weigh as much. That's the only recompense that I can think of.

I find that I'm impatient for things to move forward. I'm absolutely sick to pieces of being told that without a transplant that I'll die. Got it. Trust me, the first time I heard it, it was imprinted permanently on my brain. I know that I need to have a BMT or an umbilical cord stem cell transplant in order to survive. I'd love for the people in charge of green lighting my insurance to pull their heads out of certain orifices and see the light.

Today, I learned that a certain person in charge of managing my file at a place that shall go unnamed was getting testy with my stem cell social worker and the woman in charge of the business office at MDA. Let's call the testy person Kitty, since I don't think she'd appreciate being named outright. As it was told to me, she was adamant that my advocates at MDA were pushing me into the decision for a stem cell transplant using umbilical cord blood. Let me set the record straight right now. I am absolutely insulted that she thought that I would be stupid enough to let people tell me that I needed this procedure without doing quite a bit of research on my own. Kitty, I have met you and until this insurance nightmare, I had the highest respect for you. I am quite versed in the difference between a BMT and a stem cell transplant using umbilical cord blood. I can quote statistics and potential outcomes until you pass out from boredom. Chris is so versed in the topic, he can finish the doctor's sentences. I would never let a person tell me that I needed to do something without doing a little research first. How dare you. I am far from an idiot and don't appreciate being spoken of as one. Raising your voice to speak over someone doesn't make you right, it just shows that you don't have a valid argument to refute what you're being told. I know from experience that Kitty is intelligent and thoughtful and quick to solve a problem. I'm just surprised at her reactions to my situation.

As things stand, I have my orders to be admitted to the hospital. I'm tempted to burn them and go back to the apartment. I won't, because Chris would just wheel me up to the twelfth floor and tell them to set me up. He's the best thing that's ever happened to me and I don't know what I did to deserve him. I'm glad I did whatever it was. He's quit his job and uprooted his life to take care of me 24/7, and he hasn't complained. He's got quite a few more gray hairs as a result of this experience and I'm sorry for it. He didn't deserve to be put through this and I regret it.

Update

Very long and bad day...funny stuff is on hold until round 5 is over.