I’ve been having a hard time trying to figure out how to write down all that transpired from my appointment with Dana Farber last week. So much information that I’m still trying to process, wrap my head around and accept. Accepting will be the hardest part of all this.
The good news is I will only be in the hospital for a week, not a month. The first 4 days I’ll be recieving chemo (they told me I’ll probably lose my hair, at this rate I’ll come back with alfalfa hair) with the 5th day being a day of rest (In a hospital, I don’t think so) on the 6th day they will start the IV infusion of stem cells. As long as I don’t have any reactions and or problems arising I should be able to go home on the 7 or 8th day and here is where the fun lies..
The are two concerns with the stem cell transplant. The first is called Graft Vs. Host Disease and the second will be any infection and or virus’s that I am exposed to. Since I will essentially have no immune system whatsoever this will be a very real concern and something, for the first year anyways, will have to be on the forefront of my mind.
Basically I will be segregated from people and closed in spaces for a year. This means only a few people will be able to come into my home and only these people will I be able to have physical contact with. I will not be able to go to other peoples homes, or go grocery shopping, actually no stores of any kind and errands in general. No more coffee shops and or bookstores. This also includes restaurants, bars etc. My beloved Dirigo the Band music project will have to be put on the back burner unless they play an outside gig. I won’t be able to travel in other people’s cars unless very, very clean and of course my car will also have to be cleaned weekly. Oh and if you see me with a surgical mask on and wearing gloves know that it’s not a Michael Jackson impersonation(however now I know my next Halloween costume now).
Which now brings me to the condition my house has to be in. Everyday it will have to be vacumed and dusted (dust is very bad b/c I can develop a respiratory infection). The bathroom has to be scrubbed down daily, top to bottom (concern here is mold which can easily cause a respiratory infection). I will not be able to do any of this cleaning for a year nor will I be able to do any cooking for three months. Concern here is food bacteria. We are all exposed to many different kinds, myself included and normally we can fight them off without ever knowing we were exposed to them. However due to having nothing to fight with I will be exposed to all of them and able to contract them very easily. Therefore I will not be able to prepare my own food for three months. I can eat nothing raw. Veggies and fruit will have to be cooked. Meats have to be cooked well done and no take out.
I will have to go down to Boston weekly for the first three months to have blood counts done and an exam. After three months it will be once a week. If any signs of a cold come on I have to be seen. If I have an upset stomach I have to call them. If I get a headache I have to call them, as well as any sniffles and or congestion.
I’m sure there are other things that I’m forgetting since there is so much I will have to change and or reduce. Needless to say this is not what I expected and was pretty shocked to hear this news. Since I’ve been diagnosed with Cancer a lot has been taken away and for me finding the positive has been important. Going to cafes and bookstores when I’m feeling ok, going to see live music and on occasions eating out with friends. Doing errands as mundane as that is was a nice way for me to get out. Having dinners at friends homes will be a no no. These things that have kept me going for the 1 1/2 years I will be no longer able to do for a year. I know it’s only a year but then again it is a year and I’m very tired.
The procduere will probably happen sometime in 4-6 weeks and only if my cancer doesn’t return for it has to be done when I’m in remission and since my cancer came back within 2-3 months last time I feel like I’m racing against the clock here and as much as I don’t want to do it I know it is what is needed in order for me to have a cure.
As I said in the beginning I’m still trying to make sense of it all and all that this coming year will entail. I know there is a long term goal here and I know I have to rememeber that but.. it still is a lot to deal with and will take some time for me to do that. The stress of the stem call transplant working (80-85% cure rate) and worried about getting sick all the time will wear on me heavy. Until the transplant my biggest fear is the Cancer coming back before the transplant is done (only the strongest cancer cells survive so if it does come back it can be harder to get rid of and the chemo takes more of a toll on my body) so if I don’t answer emails, messages, calls or texts right away please do not take it personally. It is only because I’m not in the best frame of mind and sometimes I just don’t have the emotional clarity I need to deal with people right now. Although I know I need to see as many people as I can before the transplant takes place. I’m sure in a short time things will settle down and I will put my big girl pants on (currently beinging laundered), stand up straight and face the bitch, hopefully once and for all.
~ Peace ~
