Last night we were anticipating talking to Dr. G about the surgery and his impressions and recommendations, but we did not have an idea of when the call might come in. Usually calls from the hospital come in on a number that my phone recognizes, but we weren’t sure where he’d be calling from. So at around 5:30 p.m. I got a No Caller ID call, which I normally do not take, and took it, and of course it was a local non-profit or political group asking for a donation. Then I got another No Caller ID call immediately thereafter, and didn’t answer it, and it was him. He left a message that he would call after 8 p.m. So, ugh, more waiting. But it was a beautiful evening and frankly I had little better to do. But once 8:00 rolled around I was determined to answer any and all calls. A call came through that showed a phone number but one my phone didn’t know, and I took it and it was him. Relief!
What he had to say was:
- There was cancer visible via the laparoscopy, in two places, one up on the peritoneum near the diaphragm, and the other down lower in the pelvis, but apparently not on any major organs, such as bowel or bladder, etc.
- It is not such that surgical removal is recommended.
- A biopsy was taken and the molecular testing should be done in about a week. The point of this is to find which treatments will be most effective.
- About one liter of ascites (fluid) was drained. (I feel much better already!)
- He would like to see me/us next Thursday or Friday to discuss.
- He believes, because I am platinum sensitive and HRD positive (homologous recombination deficiency) (but not BRCA), that 3 or 4 rounds of a more mild chemo should do the trick, with fewer side effects, ie., less or no neuropathy and no hair loss (yay!). And that after chemo I would be a good fit for a PARP inhibitor to keep me in remission. He recommends starting the chemo the week after next.
- We asked about immunotherapy and he said it is not FDA approved for ovarian cancer yet, but there are some trials going on, and if my results are a match I could maybe get involved with one of these trials. I have read on The Truth About Cancer that Jimmy Carter had immunotherapy for his brain cancer, and he is now cancer free. Apparently it helps one’s own immune system fight off the cancer more effectively, and in trials the cancer just sort of melts away. I’m a fan of that! (The article from TTAC mentions a conference in June in Colorado but I’m still trying to get answers from them about which conference that was. More info as it becomes available.)
- Grant also wanted his impression on how my recurrence compares to what he has seen, and he said it was middle of the road. In other words, not too surprising. Typically a recurrence occurs about a year out from last treatment, so I’m a little early, but not that unusual.
There was a news story recently in our area in which they interviewed Dr. Guntupalli. It is here. In it he talks about ovarian cancer being a chronic illness these days rather than a fatal illness that it was even a few years ago. Also, it mentions Jodi’s Race which is a fundraiser and awareness campaign of the Colorado Ovarian Cancer Alliance. It was held in June.
Overall I’m doing pretty well. Sore of course, but not too bad. I am again on lifting restrictions of nothing over 10 lbs/4.5 kg for 42 days/6 weeks. All the pets weigh more than that, so that will be tricky. I have two small holes in my belly, and some soreness on my lips and throat from intubation, but overall, not too bad. Glad for pain pills.
After filling my Dad in on the phone call in a good conversation, Grant and I also had a really good talk yesterday after everything. Grounding is what he called it. Nothing like facing something so major to really bring a relationship into “what’s real.” Really, though, speaking as a counselor, it is also easily true that something so major can bring up all sorts of reactions in people. Maybe a desire to get away from it, or a numbing out, or any of a variety of ways to cope with such a big situation. All completely understandable. I feel very fortunate to have a partner who is staying here, staying present, being real, and incredibly supportive. And I know it is also a challenge for him. So, gratitude from me to you, DearHeart. ❤️🙏🏼
And also gratitude from me to you, all my social support network. Your support makes a YUGE difference to me.
That’s enough for now.
May you be C-ful in this present moment. It is all we ever have. Now. ❤️💛💚💙💜