So often our cancer journey has been about moving from crisis to crisis, adjusting to one new development after another, and focusing on the issue at hand. The stress that accompanies that is unique and challenging, for sure.
But I’ve come to understand that those times when we’re not necessarily facing an emergency but instead proactively figuring out what comes next, researching options, getting appointments scheduled with the proper doctors, and waiting (always, ALWAYS waiting) create a more intense, difficult type of stress. It’s harder to see or understand because it creeps up on me, but it’s much more challenging in the long run to deal with.
Right now, we’re dealing with a combination of both types of stress (lucky us). We’re diligently working on getting John in to see a urologist to take care of his most recent and fairly emergent tumor (the current crisis) while also communicating with The National Cancer Institute (NCI) in Bethesda, Maryland and working on getting him into a treatment program there. There are lots of boxes that need to be ticked in order for him to schedule his first assessment appointment with them. That means coordinating with his current doctors and getting the records and tests they need sent to NCI as soon as possible.
The bigger stress in all of this is that John’s currently not getting any treatment for his cancer. He has to be off of everything in order to be eligible for the NCI program. Since he has a gene mutation that accelerates the growth of his tumors, we’re literally watching things progress almost daily and feeling helpless to do anything about it at present. He’s in some pain from the tumors just below his collarbone and under his left arm, and can almost feel them growing.
I just want to scream a lot of the time. I feel like Shirley McClain in that hospital scene in “Terms of Endearment.”
Part of me understands that he’s obviously not the only cancer patient being treated by his doctors and that they’re moving as fast as they can. The other part feels like he’s my biggest priority and I’d do anything to move things along for him. Not to sound selfish, but he’s the only one of their cancer patients I currently care about. And the waiting is hell.
Worst of all is the unknown in our lives. We cannot make plans, even for this week, let alone next month. We have to be ready to move at the drop of a hat in case he’s able to get in to see the appropriate doctor. We live in a constant state of “hurry up and wait.” Routine, something upon which I thrive, is fleeting and not something I can count on. That causes (you guessed it…) more stress.
I try to stay present, to live in the right now and not worry about tomorrow or next week. Some days I succeed pretty well. We still laugh a lot, but all of the stress is taking a toll. It’s wearing us both down. We don’t really talk about it much but we know it’s true.
So, on the horizon (fingers crossed), are several trips back east to Bethesda to The National Institute of Health for this study (it’s called TIL which stands for Tumor Infiltrating Lymphocytes). If he’s accepted, there will be a surgery to remove white blood cells from one of his tumors, a six to eight week break for them to grow billions of new cells from those they extract, and then a second trip for him to undergo aggressive chemotherapy in the hospital to wipe out his entire immune system (and all of his current white blood cells). Then he’ll receive the new T-cells and we’ll pray this treatment works. We’re running out of options and this is our best hope at present.