At the survivorship clinic I just took I am presented with a nice succinct list of all the chemical agents I was given. That’s handy when I go to the cardiologist in the possible future when the Doxorubicin that entered my body through IV has finally thinned my heart muscle through a process called “caridomyopathy weakness”. These late effects of this common chemo can appear any time for up to 15 years, along with bone thinning, lung scarring and increased risk for secondary cancers.
The nurse practioner reminded me that I had been #34 in a clinical trial. “We’ve learned that some people survive the side effects of getting Car-T-cells and some don’t. Yeah, that means we killed some people with the cure, but they were going to die anyway.”
I appreciated this candor. I already knew it was true from my reading. But no one had said it out loud. “Even though your B-cells are returning,” she continued, “it could be that your T-cells got enough instruction from the Car T-cells so that they now know what to do.”
“Since you were at the beginning of the clinical trial,” she went on, “we didn’t have much idea what we were doing. It was like making cookies without a recipe. A pinch of this, a cup of that. So maybe we hit on the right recipe with you.”
(I try this out on my regular oncologist, on the same day of that visit. He snorts. End of conversation.)
At the phlebotomy clinic, busy as always with people piled in all the corners of the waiting room, they have 15 vials waiting to be filled with my blood. Most of them are marked “research”.
“Does that mean we get to see what the research shows?” I ask my oncologist during our visit. Things like the knowing level of inflammation, for example, would be useful. “Or does it just go into the black box of research, without either of us having access to it?”
“Black box,” he replies. End of conversation.
The four regular vials of blood he ordered offer some hope for Dr. Weston, in my ongoing quest to deal with metabolic syndrome. My blood sugar levels are down, a fact that floods me with relief. I may have just hit on the right combination of supplements and diet to fight off the creeping insulin resistance. The elevated liver enzyme levels are down. So I will resume Tumeric, in my own little experiment to see if I can take this beneficial spice without ill effect.
You know that little notation that says “Always consult your physician before before taking … Fill in the blank . . . any supplement” (or beginning any exercise program)”? That’s just funny. Really funny. Seriously. They will actually think you are crazy for taking just about any supplement.
“Just keep doing what you’ve been doing.” My doctor said as he left the room. I think about the papaya enzyme extract that raised my critically low platelets, and the auryuvedic herb that lowered my blood pressure and the various herbs and supplements that lower dangerously high blood sugar and cholesterol.
I nod. “Okay.”
And I wonder how satisfied he is with this encounter or does he leave as bemused and confused and shortchanged as I do? Remember, I remind myself, that for every patient like you there are 20 others that just want the drugs, and don’t resist or ask questions.
After these visits, I drive home on a busy freeway, thinking these thoughts. Doctors have to act like they know everything because we expect that of them. Your own history and biological/chemical makeup and attitudes and education, outlook on life and life circumstances have everything to do with your chances of survival but doctors have no way to quantify that, and perhaps that’s as it should be. Perhaps it’s best left as the great mystery.
In the world of cancer and cancer treatment, we engage in the deepest conversations about life and death, if we want to, and can allow it.
People will say things like, “anything can happen”, trying to encourage you that a miracle is waiting for you. But that means anything, including getting worse and dying. It is not the fault of the sick person if that’s what happens. It’s not that they didn’t believe hard enough or deserve a miracle. I think the goal is to literally stay open to “Anything can happen”. In that space, miracles can happen. Forgiveness can happen, Faith can happen, Love can be expressed, Memories can be remembered, Lives can be recounted, Gratitude and love can be let loose from a lifetime of holding. Sometimes, the body can be healed. Sometimes the heart of the person witnessing is healed. If only one of those happens, it’s miraculous.
It’s a long journey to go from angry and sad to staying open and holding all these possibilities. People who survive a round with cancer have a combination of the right genetics and the right attitudes (a lot of other right factors–like the right doctor, hospital, insurance an support system).
I call my attitude “NDY” for “Not Dead Yet”. During both cancer treatments, any day when I was NDY, weak but alive, and walked above ground (or, in some cases, crawled), time held all those possibilities. Sometimes all I could do was watch streaming TV in between all the hospital procedures. But even then, I envisioned myself coming back to the Salish Sea and walking on her shores and mountains. Was that positive thinking? Yes, clearly, but I can’t forget the deeply heartbroken young man who was down the hall from me in the whole body radiation room 24 hours a day for a few days. I can’t even imagine where he went in his head for sanctuary. I don’t know if he survived. But his parents sat outside his room everyday. Not talking and not doing much. I know they were praying, unceasingly. For the life of their son, for his soul and for their own souls, and for the cessation of suffering. What was happening here? Surely things were happening in the realm of possibilities between his “no access” room and the hallway where they set up their waiting. Things happened to me, for sure, as I had the privilege to silently observe this. I have to believe some kind of healing happened, though it might not have had the outcome we all wanted to see. I can’t imagine projecting some kind of failure on any of them because they didn’t think positively enough. If I had a prayer about it, or about anyone, including me, in this situation it would be one of compassion and stillness, so that I might be able to be to discern the beauty of their love.