We are on vacation, hoping to get away from some of the breast cancer stress. The weather here in Florida has been less than ideal for beach and pool, but just fine for spending time with friends, shopping, dining, and a little casino action.
Today I got a call from Faulkner Hospital in Boston, and I will be going there on Tuesday the 25th for my pre-op physical and tests. I'll have to undergo an EKG, although hopefully I won't need a chest xray or any lab work as I have test results that are less than 30 days old.
Surgery will be on Wednesday at 11:30. I have to be there at 10:00, so that is not too bad. It is an "easy" surgery (if there is such a thing) and I'll go home later in the afternoon. The tissue expanders will be removed and i will be able to take a deep breath again. I'm not all that upset about this turn of events, and I know it's the right thing so that we can proceed with radiation.
Wouldn't it be nice if one of my previous surgeons had mentioned to me, before my mastectomies and immediate reconstruction back in April, that these tisue expanders might cause a problem with radiation? It's not like we didn't know that radiation would be necessary. It took me about 30 minutes of internet research to figure out that partially filled tissue expanders would cause a problem with radiation planning, where pinpoint accuracy is necessary.
Someone asked me who was the "project manager" for my care. Breast cancer treatment involves, at a minimum, a breast surgeon, plastic surgeon, medical oncologist, radiation oncologist and your primary care physician. At this point, I am the project manager. It's my body, someone has to take control, and I think it had better be my job.
I can think of no one else who could be a better manager.
ReplyDeleteYou have my best wishes and are constantly in my thoughts.
You truly are an ECaP!
I will be thinking of you next Wednesday mi amiga.
Kevin
Having been through it, I'll have to admit that I thought it odd you were beginning the plastics part prior to radiation, however, cancers and their treatments are different, and your experience is different than mine because of that. What I WILL share is that, after I completed radiaiton, each time I visited my oncologist, she mentioned that I was getting "harder." She explained that even after radiation is complete, it still "bounces around" in your body and continues to make new scar tissue. Once the plastic surgery was performed, my mobility increased, and my lymphodema decreased.
ReplyDeleteOne more tip: Before and after treatments, and frequently during the day, slather on Aloe Vera gel on the radiated sites. That will decrease the burning. And trust me, burning can be brutal if you don't. But -- I'd do it again in a heartbeat. ANYTHING to aid in a positive outcome. Know that you are in my thoughts! Ellen Wall
You would think that there would be someone who could coordinate all of the aspects of the cancer treatment and reconstruction. Ultimately, we are the best advocates for ourselves, but it would be nice to have a medical professional bring up the issues we ourselves don't consider. It sounds like a great job for an oncology nurse. Some who has intimate knowledge of breast cancer treatment to pull all the specialists together for a smooth progression from diagnosis to reconstruction.
ReplyDeleteMichelle - This could be a career for you if you're looking for one. Patient advocate for breast cancer patients.
Elaine
Michelle, I will be thinking about you as you go through this next step.
ReplyDeleteYou are right that you need to be in charge as you have the most interest in the outcome. However, it is sad that the medical profession seems to have regressed in terms of comprehensive patient care.
Elaine brought up a good point - why isn't there a coordinator for the process, start to finish. Seems like a career opportunity for someone.
Good luck on Wednesday.
Michelle, I too believe that this would be a great career for you, as I feel you could help MANY women look at the different possibilities in fighting breast cancer, and learn to do it in a way that is positive. You have been such a great role model for others. You have taught us all how to research and be our own advocates.
ReplyDeleteGood luck on your operation tomorrow. I'll be thinking of you!
Phototaker