Many people have asked me if I can go out. I go out all the time. I try to avoid large crowds and just crowded areas in general. I also avoid anyone who is sick. I try to avoid the mall as much as is humanly possible. There are things I need for my extended Boston stay like robes and crap like that. I've recently discovered the joys of eBay!! Now I just have to remember Lee's charge card info for future purchases. (0nly kidding...maybe!) The one thing I'm having trouble figuring out is tops to wear. I'll have something called a triple lumen hickman put in my chest. It's not a port under the skin, it is visible and looks like a large cross. It has three lines coming out of it and one is designated for chemo only. Needless to say, I have to find tops that will give the medical people easy access to that area on my chest. It's not easy to find button down shirts to fit my voluptuous bod!! Last time I had this done, I wore johnny coats, but this time I would like to change into real clothes every day, especially if I have company. The good news is, is that I already have a scar from the last one so I know exactly where the access needs to be. I don't want to wear deep v-necks, because I'm not sure that I will be able to wear an upper region garment and it might look gross. No one wants to witness saggy boobage. I did buy a robe thing to cover up the aging deflation. I will still attempt to look half way decent and not look like an old pole dancer. So, that's my wardrobe issue.
I've already told you all about my letter to the President of Danbury hospital. Well, the other day, I received a phone call from a person looking into my concerns. We were on the phone for about 40 minutes and I told her everything and I mean everything!! As of now, she is looking for a doctor who is a better fit for me and who has more knowledge of my disease. She also understood that after my transplant, I can't sit in a waiting room for an hour or more. First of all, I'll be too weak and second of all I can't be around that many people for any length of time. I have to say that I'm very happy that I've received a letter and a phone call about stuff. I really hope it isn't just lip service. Time will tell.
My requests for my records have been sent in, so today I called to make sure the hospital received the request and the person handling it had today off and no one else could help me. Another week has gone by without a second opinion. I'm actually confident with my Boston doctor and I don't really feel the need for another opinion, but Lee thinks it's important and I guess it doesn't hurt. You never know what could come out of it. I just worry about getting even more confused than I already am about everything. It's a roller coaster ride and I never cared for roller coasters. I worry about my family and friends and how they are handling everything. I know this is sucky for everyone, not just me. Well, a little more sucky for me than anyone else, but I acknowledge that it isn't easy for any of us. Okay, it's way worse for me!!! I'm getting emotionally ready for one hell of a fight. I'll cut a bitch!! The bitch is called MDS!
Peace out peeps
No comments:
Post a Comment