Life during breast cancer.
Hi. I was dx'd with metastatic lobular carcinoma in 2018. I had gone to a dermatologist because of a sore on my thigh. Turns out it was positive for MBC. I saw an Oncologist , and was informed it was stage 4 terminal. So I was on Ibrance for 4 years, and was doing well. But then my cancer markers started to go up. But not reflected on the PET scans. At this time I had severe upper gastric pain. It was so bad I checked myself into a hospital twice, must have gone thru 10 docs with their tests and scans but none of them said it looked like cancer. Finally a GI doc gave me an endoscopy and did a biopsy that was cancer. My colonoscopy found cancer as well. Three different blood markers were rising but all the emphasis was still on those PET scans which were missing a hefty amount of cancer, so it's now all over my body, no organs or lymph nodes.
My Oncologist said when he admitted me in the hospital in October, he thought I was not going to make it. I was so so tired all the time, could barely make it to the bathroom without being exhausted. The doc finally put me on Taxol, I had lost 30 pounds in like 2 months. He wanted to put a peg in but could not because I had ascites with cancer in it, and they actually drained 3 liters of fluid (out of a 100 pound frame.) My hemaglobin was 6.7, which in my eyes was not compatible with life! I got 2 liters of blood. Between the blood, the chemo, and TPN IV nutrition 24/7, I perked right up and now feel completely normal!
But I think I've learned some important things . PET scans are not always the complete answer. Blood cancer markers (like CA 153-20, hope I've got those right) and I get 2 others. Those blood CA markers are so much more important than I or the Dr. thought especially when I learned sometimes it's the only thing that shows your CA status. And I will be watching my Hemoglobin numbers closely because that was the cause of all the fatigue. So I feel I was near death.
I will be watching those CA markers like a hawk, get checked for ascites probably monthly and drained if needed, keep my weight up. That's a tough one. Because for months I've been battling Food Aversion. Food makes me gag horribly. Even the thought of eating later, or thinking about food. That's hard . I could cry every time I can't eat the food. It's very sad.
So I really could write alot more , and I do promise that my future posts will not be this long.
Recently I have been thinking alot about what I should not buy because I'm going to die. Like clothes, or any household items.
So my family thinks I am totally crazy when I ordered 6 baby chicks for May. I just got bogged down with all the things I should not buy, and just wanted to not think about dying dictating what I should buy or not. Just a bit of freedom. Who understands me?