When you have Cancer, there’s a lot of waiting. Get a scan. Wait for the results. Show up on time for your doctor’s appointments. Wait for your doctors. Head to the lab. Wait for the lab tech. On Wednesday, as we were sitting in our third waiting room of the day waiting for the CT scan, I looked at John and said, “You know, cancer is boring.” That’s not the only adjective I’d use to describe it, but it was one of the most accurate this week. Boring and brutal.
There’s been a lot happening all at once with John’s cancer. Now that the dust has settled a bit, let me fill you in. We’ve been on a bit of a roller coaster and I don’t see this ride ending anytime soon.
Here’s the Reader’s Digest version:
He had a PET scan two weeks ago and on Monday our local oncologist said, while the results still indicate spread and growth and Stage IV, it looked much better than he was expecting based on the CT scan from last month, so that was a glimmer of hope. In the meantime, we got a call from Seattle Cancer Care Alliance telling us that a spot in the clinical trial we’ve been trying to get into had opened up and John is a perfect fit. We headed to Seattle Tuesday night and spent the better part of the day Wednesday on intake for that, signing forms and getting an EKG, blood drawn, and a new CT scan (boring!).
We also met with John’s oncologist at SCCA as part of the intake. The lump in his groin has grown significantly and a little more rapidly than we’d hoped it would. He also identified a spot that we saw on the PET scan in his left collarbone area as a new affected lymph node. In short, it’s in his blood and moving (which is what metastatic means, so I don’t know why those words seemed so hard to hear. It’s not like they were a surprise. It just felt brutal). He’s hopeful that the trial, which is a combination of PD1 (and you can watch a quick, super informative video here that tells you what the heck PD1 receptors are and how immunotherapy can help) and Ipilimumab (which I not only know how to spell, but can also pronounce now, even though I didn’t even know what it was a month ago) will slow or even shrink the affected areas and keep the melanoma from spreading any more. The affects are working short term for patients in trials so far, but there is no evidence regarding how long they last.
There are no short term bad effects from the drugs (no hair loss, nausea, etc.), but the long term effects can be very serious. Colitis, pancreatitis, lung infections, neuropathy, and liver problems. None of these sound fun so we’ve decided we’ll pass on them and just get the good effects from the drug. He’ll be in the trial through the beginning of October, heading to Seattle every week for the first 6 weeks for monitoring between infusions, and then every 3 weeks after that.
It’s about 600 miles round trip to SCCA from our home in Walla Walla. Good thing those Reinkens boys like to drive!
His doctor did not tell us this trial would cure him. Nothing can do that at present. We’re hopeful that if we continue doing everything humanly possible to slow down the spread and growth, he’ll still be around when they do make a significant medical discovery that could cure him.
John also tested positive for the BRAF mutation (similar to the BRAC in women with a history of breast cancer), which means the part of the cell that’s supposed to tell it to stop multiplying is being overridden by this mutation. The doctor said that’s probably why the lump is growing so fast. There are drugs he can give John that can slow down the mutation and re-activate the “stop multiplying” message once the clinical trial is over if we don’t get the result we want, but it’s a short term fix. After about 9 months of those drugs, John’s body will get wise to the ruse, override the drugs, and the mutation will kick back in.
So basically our life just became about living with cancer indefinitely, hoping something we’re doing, from the herbs to the essential oils, the cannabis oil to the daily juicing and dietary changes, will create a miracle.
As for me…I’m struggling a lot more than I thought I would. I’ve honestly never been through anything like this and I don’t know how to “be” this person who seems to have lost her drive and ambition and succumbs to uncontrollable waves of sadness multiple times throughout the day. Actually, it’s not just sadness. It’s fear at the deepest level and on so many levels, and frustration that my default positive attitude seems to have gone on an extended vacation with no expected return date. The things I’ve always done (and teach others to do) to lift my mood and change the present “space” I’m in just aren’t working. I’m seeking out a support group for caregivers at our local cancer center and have an appointment to start chatting with a counselor next week. I’m hoping that will help and that, as we move through this, I can begin to savor more moments in my day than I dread. It’s definitely brutal but I have the best support system in the world and I’m learning to lean on them a lot, so that’s certainly a positive that’s come from this situation.
We should be starting the trial next week so I’ll update you on that adventure as it unfolds.