I am quite glad I took a break from the heavy stuff, because it all came flooding back today. I had my MUGA scan today-it went fine. I really hate IV's and all that, but the results came back in the normal range. I looked it up and I am close to not being in the normal range, so I emailed my doctor to ask what that means. Especially because I read that Herceptin can cause heart damage. Great, another thing to file away in the "Could Happen" drawer. After that test, I went to meet the radiologist with Brad. She is kind of stony, very business-no warmth at all. Too bad. Glad she is a radiologist and I don't have to see her often, in fact she is going to leave at the end of he month for a maternity leave, so I won't see much of her at all. I will get her colleague. Anyway, lots of information, disappointment and overload.
On the good side she said the tough stuff is over, radiation should be a lot easier. She also said she should be able to get me in after school for the most part so I don't have to take time off to do the 33 treatments. She also said the risks of radiation outweigh the possible side effects, short and long term. That's about it on the good side. 33 treatments.
The disappointing side is that she said that I won't be able to get the surgery in January. She said she recommends 3-4 months after treatment to do reconstruction. However, she also pretty much said she has never had a patient like me who is having delayed reconstruction. All of her patients come with the expanders-I told her my story. She said she has read about better results for delayed reconstruction due to the tissue healing better and less chance of wound infection. That's good I guess. Do I have a choice in any of this if I want to live? Not really. So my glimmer of hope for a start of a new body is gone. Now I have no idea of when anything will happen. WTF.
She also said that some side effects could be: fatigue (great!), burns (most likely), shortness of breath, fractured ribs (ouch), down the road target area cancer (joy), and chronic lymphedema. I don't want lymphedema. She said if I get it, I will have it for the rest of my life. She said though, because I haven't had it, that helps my chances of not getting it. So much information and things to think about and process. Just makes my head ache. I have this terrible image of what I am going to turn into. I don't want to be a fat, boobless, woman with a giant swollen arm for the rest of my life just waiting for the next cancer to come that one of my treatments caused. I don't want that at all. I can't let that happen. I am not going to get lymphedema, just not!!! This is all so scary and tiring. This is physically and mentally taxing. I am not being negative, I am being a realist. I think I am going to be okay, and I want to be okay, but I need doctors to stop telling me all this crap! I don't want to go to doctors all the time. Oh, and get this. The lady who was doing my MUGA scan started flapping her jaw about how her mom had bc and went through radiation and then got soft tissue cancer from it. Really? Really? That is what you tell your patients? I told her to not tell me anything else. Really?!?!??! Can't people just shut up? No sensitivity what so ever. She made me cry.
Next step-Wednesday. I go back to radiation for a "planning" session. This is when they make my mold (I keep thinking like Han Solo in that freezy thing) and start planning my radiation. This appointment is another fun filled hour. Then we decide on a start date. She said we can start about anytime after a week of planning, it takes her a few days to get it all dialed in. She was thinking the 20th. I am not sure I care, except that the 18th I already have two after school doctor appointments and am not sure how to be in 3 places. I can always take part of the day off of school, but I am trying to avoid that if possible. I need to start thinking that I need to just take care of all this now, get it done and things should be less and less at the doctor after radiation. After the new year, it looks like every three weeks for the Herceptin and who knows when for surgery. Not January. Maybe March or April? Round it to a full year. Awesome. Maybe they can do the change out in July, and take my port out at the same time. No, that is too long. But who knows.
So that is that. Enough for one day. Turn me over, I'm done.
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