The last 10 days or so have been some of the most difficult I’ve experienced in my life (up until now). After returning from a disappointing meeting with a surgical oncologist in Seattle a few weeks ago, we’ve been processing lots of difficult information. As we feared, John’s options for treatment are dwindling away to virtually nothing.
We’ve heard from the National Cancer Institute and, due to the tumors in his abdomen, John is no longer eligible for that trial (or any trial unless they can identify and eliminate the bleeding in his abdomen, which is very challenging). The immunotherapy options (Optivo, Keytruda, Ipilumimab) have proven unsuccessful in fighting (or affecting in any real way) his cancer. All of these drugs have a 50% success rate and unfortunately, he’s fallen on the wrong side of the percentage. And because he has the BRAF gene mutation which causes the cancer cells in his body to multiply faster, the tumors are spreading fast.
So here’s where we are now. John will be starting radiation tomorrow on his left shoulder. The nerve bundle called the Brachial Plexus is being irritated by the numerous tumors there and causing him lots of discomfort. The radiation is hopefully going to help alleviate some of that pain. He’s also taking some pain meds which specifically target nerve pain and he’s using medicinal cannabis oil to help manage the pain and help him sleep at night.
We’ve met with a social worker from the hospital to talk about palliative care vs. hospice, and have had the difficult conversation with his local oncologist about how we’ll know when it’s time for hospice. We are not giving up yet. John’s hoping to chat with a doctor at Huntsman in Utah about a study they’re doing there using the Herpes virus, but more immunotherapy probably won’t work for him. Melanoma is such a tricky, aggressive cancer that there just aren’t that many options once you get to the point at which we currently find ourselves.
Just as he’s been throughout this journey, John is still my rock. His attitude is unbelievably positive. He has yet to have a “poor me” moment, and just keeps expressing gratitude for all the blessings in his life, reiterating that he’s happy with his life, all that he’s accomplished, our time together, and where he is now. His attitude is, basically, it’s been a great life and I have no complaints, no matter what happens. I am continually humbled and amazed by this man every single day.
I have cried buckets of tears in the past 2 weeks. The pain is physical and intense and comes over me like waves, when I least expect it, at the most unexpected times. I can literally feel my heart breaking.
I think about the things he’ll most likely miss unless we get our miracle. I think about our kids and how this will impact them.
I think about the life we planned and all the things we were ready to start doing once we became “empty nesters” next year, and about how I’ll manage if I have to do those things alone.
I think about how perfectly John loves me, how perfect he is for me, and how I can’t imagine my life without that love.
Mostly, I think about how much my life has changed because of him. How I move through the world differently because of the way he’s loved me. How much I love his kids and the gift he gave me of the daughter I never thought I’d have. How the last six years we’ve had together have been the best of my life.
No matter how much longer we have together, those years have changed me for good and I would not trade them, even to avoid the pain I’m in now, for anything.