Cancer Update
I started feeling better after I started the current chemo regimen Dec 1
I have been quiet on social media and on the blog for a little while because I have been slowly processing my current health situation and have not known how to put it into words.
I’ve known for awhile that in addition to the small tumors I have growing in my right lung and liver that I have tumor masses growing on both of my ovaries. The ovarian masses have not responded to any of the chemo drugs I have been on and have been continuing to grow—they are now the size of oranges. When we found out about the chemo-resistant ovarian masses in October is when David and I really started to process that my case is terminal, chemotherapy at this point is only palliative, and that life is fragile. We are still trying to wrap our heads around the fact that the rest of my life will be measured in months. Likely, 2020 will be my last year. We have some hope that it could be longer, but nothing is certain.
I was on a chemo break starting mid-September that was supposed to go through the new year because the scan I had then showed that most of the smaller tumors were stable (not growing). But my ovaries looked a little enlarged, so I had some additional tests done.
We didn’t get the results of those additional tests until mid-October. They showed that the ovarian changes were not benign, but most likely tumor masses that hadn’t responded to chemotherapy. My team recommended we continue to monitor my symptoms and to continue the chemo break. At that point or shortly after, I began to notice symptoms that were very similar to the initial symptoms that led to my diagnosis. I was having abdominal pain and fevers. I was losing my appetite and I was extremely bloated. While we were just monitoring this symptoms at first, they were not getting better and in November, I pleaded for my team to put me back on chemo because I was feeling worse and worse every day and I was getting scared.
Our Patagonia trip almost didn’t happen because I was so sick and feeling so unwell. Even though there were scheduling problems and we needed insurance pre-approval to add another chemo drug to my regimen in the hopes of slowing the ovarian tumor growth, I was able to receive chemo just three days before we left for Patagonia. We weren’t sure that the additional drug would do anything. I started to think it might be the beginning of the end. But somehow after receiving that infusion I started feeling better and we made it to Patagonia, one of the most amazing (if not the most amazing) trip David and I have ever taken. I’m so thankful that the chemo started working because without it I probably would not have made it to 2020.
After 4 rounds of chemo, Jan 28
The side effects from the current chemo regimen I’ve been on since November are brutal. I’ve had 7 cycles of this regimen over the last 14 weeks and each round, I notice that the overwhelming fatigue and lack of energy has been lasting longer. I used to feel well enough to go on walks with Kodi and cook dinner and run errands about five days into each cycle, leaving me with about nine good days. Now I’m lucky if I get three good days out of each cycle. That’s just the tip of the iceberg. I have nausea and diarrhea for at least the first four days, but it’s also been getting worse. My hands and feet have become so dry and cracked that I’m developing nail infections and I can’t use my hands to open bottles, jars, cans. Probably the most notable and irritating effect is the acne-like rash that is all over my face, scalp, neck, shoulders, and back. It is constantly itchy or painful and the topicals I’m using only provide temporary relief. My hair has thinned so much I’ve shaved my head. With the hair and the rash when I look in the mirror I don’t even recognize who I am anymore. I want a break from these side effects so badly, but I know if I’m off chemo things will get worse again. Some days I can find the strength to push through but other days I’m so frustrated and angry and exhausted and just OVER IT that I think about stopping chemo completely.
We have received some good news recently. My most recent scan showed that all of the tumors besides the ovarian masses have stayed stable. So we revisited the possibility of having my ovaries removed. After meeting with a gynecologic oncologist (gyn surgeon specializing in cancer) she determined I was a good surgical candidate and we scheduled surgery for April 13. I am so relieved that soon I will be feeling less pain and discomfort. At the same time I’m grappling with going through menopause at age 30 and the loss of what anatomically makes me a woman. With that comes the deeper feeling of knowing that I will never be able to have children, so I am grieving that loss and it is overwhelming to process.
