Feeling like a number not a patient or human... post from 1/30/17

It seems when I don't do something timely my friends start wondering if everything is ok with me. To be honest it isn't. I had a kidney infection in early January and went on antibiotics, stepped up my water intake to flush the system and that helped and I actually felt better for a good 5 days! I had another round of chemo (#5) and I was mapped for radiation and then came down with a bad head/sinus/chest cold. My radiation treatments started on January 25th. So as it stands now, I'm several days into daily radiation (sans weekends), it will continue until March 8. It doesn't hurt yet, but they tell me after about two weeks the breast is sore like it's sunburned.

I've also had some soul searching about me and my treatments and my expectations about my treatments and my doctors. Mostly I find that I have been so anxious about procedures and timelines that I've wasted my energy trying to make a medical system different than what it is. I make assumptions that I'm scheduled for this treatment or that treatment and find out that it's only a consult! I discovered that a treatment plan for radiation wasn’t finalized much less started and I thought, "what the hell?" 

I've felt alone, very alone in my managing my health care and wondering about my medical team. But it's not quite that way it seems. Sure, I'm pushing and nudging what I think is moves my treatments along, but I don't know anything about radiation/oncology and I know far less about my chemotherapy trial. 

The last three evening drives to Springfield for radiation I've talked out my concerns with my son Thomas. I realize that as far as my DFCI oncology treatments go, I'm never going to have a "supportive" team. I'm in a trial, a research trial, I'm a number. There's no social worker/patient care, it's just the facts, the data to enter into the computer. So now I know, I'm hardly ever going to see my oncologist, might see her PA more but that will not be often, I'll see the research nurse Janet (who has been a disappointment as far as nursing goes) and I’ll call it a day. Would I change my mind about being in this trial? No I wouldn't. I don’t have a lick of doubt about being at this top notch cancer hospital or the treatment I’m in. Do I wish there were more of a human connection? Sure, but there isn't, there hasn't been and my getting miffed, annoyed and vocal about my dissatisfaction about lack of a team just falls on deaf ears. I'm not sure they even know that there is a lack of patient care. But I assure you there is. Ah well. 

I am bolstered by my dear and loving friends, I find it hard to be my own cheer leader but I have a whole team which includes each of you cheering me on. I can visualize you building one of those human pyramid towers and I see you smile and give extra shakes on the pom-poms and tumble around and fly into the arms of strongmen. Rah! Rah! Rah! What a show!

I continue to work part time at my job and will switch to mornings only while I get radiation appointments in the afternoon. I start my first full week of radiation and on 2/7, I have my #6 chemo infusion. It’ll be a long day getting zapped first then zipping off to Boston for the drugs. Each step is a step closer to finishing my treatments for good! Won’t that be nice!

And a little Mary Tyler Moore and Dick Van Dyke:
https://youtu.be/J2yqE6xOh38