OK. I got up the courage to step on the scale. I now weigh 104.5 pounds. I am 5′ 6″ tall. I have not yet started treatment – have not even seen an oncologist. I am beyond disgusted and horrified by our medical system. No one is tracking my symptoms. No one.
I am in wracking pain at night and have told the doctors about it and no one does anything. My scans came back and said no blockage but my sigmoidoscopy said complete obstruction. Am I reading the reports incorrectly or am I the only one reading the reports? If I suddenly have a blockage, shouldn’t someone be doing something? I can barely go to the bathroom anymore. I want to eat but can’t tolerate much. Does this mean I might need emergency surgery to relieve the blockage? I don’t like the sound of that – I need a surgical oncologist and a plan of action not an ER doctor on the fly. And no one told me when I should start the anemia pills after the sigmoidoscopy. No one is paying attention.
I would not be concerned if I just had a damn doctor who was following me. But I don’t. I’m not a doctor – I can’t answer my own questions. They’re going to make an appointment for me with the oncologist – but when will that appointment be? Another week? Will I be under 100 pounds by then? No one asks me about my weight. No one has explained anything whatsoever to me about my condition. All they’ve told me are the straightforward test results which I can read on my own.
If I didn’t have the pain – and the fear of not knowing whether it indicates a potentially life-threatening emergency – and I had a doctor, I would just live my life and undergo treatment. I don’t want cancer to become the everything in my life. It is right now though because I AM ON MY OWN. Maybe it will be while I’m throwing up from chemo too. Maybe it will be period. But right now, my intention is to LIVE while I’m still alive. I am not my cancer.
The sigmoidoscopy doctor is going to call tomorrow with the second test results of the biopsy. She’s the one who is going to set my appointment with the oncologist. I need that appointment set on an emergency/rush basis.
I am basically on a conveyer belt here. No one is looking at my particulars. They send me for the blood tests, then the scans, then the biopsy. And they think their job is done. What if I lose so much weight that treatment is negatively impacted? What if my bowel just shuts down as it appears to be doing? Have they no fear?
If I need some kind of surgery to keep my sigmoid colon open or just take the goddamn thing out, I need to get a new bed in the house. I am currently living in a townhouse and there are 28 STAIRS inside the house. I’ve had surgery before and stairs are a no-go. Plus, I have a very high bed and won’t be able to lift my legs to get in it. I need a lower bed and I need to put it in the room off the garage because there are too many stairs just to get to the first floor – where, by the way, the bathroom (1/2 bath) is located.
I’ve been looking at a metal frame bed with a 4″ foam topper that got great reviews on Amazon. It folds up. I’m also looking at a cot from LLBean. It folds up very neatly/slim but it is truly a cot. I think I should get one of them in the house now so I have a place to sleep if this happens fast. If it doesn’t happen fast, at least I’ll have the bed for when I need it.
Oh, you want another fun fact? I am back to wearing Kotex pads like when I was 13 years old. Super long, super thin, super absorbent. Charming. I don’t think I need to tell you why.
Anyway, I have work-work to do today and move-related stuff and stuff that needs to be done in case something happens to me.
Talk to you later,