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A Long Overdue Blog Update

Oh, where to begin....

I last wrote an update in November. So very much has happened since then and it's hard for my memory to recall it succinctly. I'll do my best.

From November until mid-January I continued on Folfiri (chemotherapy, a second first-line treatment after doing FolFox two years ago). We noticed that my CEA numbers kept going up, and I had a big birthday party planned, so we took a pause on treatment so I could enjoy my party with my friends and family, and then we did multiple scans which showed major growth on my uterus. I was also having a ridiculous amount of pain that made me cry...a lot. There was a question as to whether it was endometriosis or cancer because of the way it was presenting, so after several CT's and MRI's, it was determined a biopsy was needed to confirm which it was.

The biopsy came back cancer rather than endometriosis, and plans were made for surgery to remove my uterus, and resect my liver during the same surgery. The short story is that they had to reopen me through my previous incision site, which isn't an easy feat (scar tissue is tough to cut through, and it also heals interestingly as well, I'm finding). Once they were in and able to see, they unfortunately saw MUCH more cancer than the scans had previously indicated, making the surgery futile. I was sewn back together (no staples this time!) and the news was given to Mike while I was still loopy from anesthesia.

When I was off the pain meds that made me loopy, I was given the news and it was, in a word, gutting. Once again my body did something unexpected and betrayed me. It's been a frustrating battle dealing with that.

I was not in the hospital as long this time as I really wanted to go home, so I powerhoused through all the things I needed to do to get released and went home. That was almost 2 months ago.

I decided even before I went in for my follow-up appointment with my oncologist that I wasn't going to do chemo anymore. That my quality of life with my family and friends, the people that I love was more important. I wasn't giving up, I was just saying no to chemo.

At my follow-up appointment, my oncologist's face was like a book I could pick up and read easily. She was heartbroken. She also expected me to go in there and say, let's keep going with whatever hardcore thing we can do next, and I didn't, and that surprised her, and I think saddened her further as she thought I had given up, that I was at the end of my rope.

The talk with her was about how one first-line treatment had failed (FolFiri) and there was only one medication difference between that and the other first-line treatment I had done previously (FolFox) so it would be unlikely to work either. The second-line treatments she said would not stop the growth of the cancer but perhaps might slow it down, but since I wanted to focus on quality of life rather than longevity, she didn't want to recommend those either. I agreed full-heartedly.

Clinical trials have always been on the table. I was screened for one back in February or March but my blood's chemical breakdown didn't match what they were looking for. There have been other promising ones that are perfecting the science stage, and I'm my oncologist's number one patient to call should they open.

In the meantime...I'm now on hospice and it's weird because I'm getting stronger each day recovering from surgery. The pain I feel is regaining muscle, feeling as if I've done 50 leg days in one day, or 1000 crunches if I bend a certain way. Logically I know that the cancer is growing inside me, and yet, being off treatment, I feel so much better. The toll that both chemo and radiation (which I haven't done but I have very close friends who have) takes on the body is tremendous and only those who have gone through it or are caretakers for those who have gone through it, truly know what it's like.

People keep calling me strong because I can nonchalantly say, I'm on hospice. I accepted that I'm going to die of this cancer a LONG time ago, one or day two? The part that upsets me is people I'm leaving behind, the people I love and whom love me, and how much they're going to hurt.

....more soon, because I do have a small dose of hope I would like to share, but that's for another blog post.



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