Two things preceded this need to address catastrophe (la cata). About a week ago I called my oldest daughter in tears. I’d been crying on and off since discovering that I’d had a cancer treatment, which caused serious but unexpected side effects, including a new heart condition. My daughter works for a large university healthcare system and I thought she could help get me back to emotional equilibrium, if not resilience.
I told her that I’d lost my cool with a nurse who was trying to guide me through the expectations of a stress test. I said I didn’t want the damn stress test. When he, the nurse, discovered that I’d had a cup of coffee that morning he said, “Well, you get your wish; you can’t have the stress test because you’ve had caffeine less than 12 hours before the test.” I was both ashamed of my behavior and relieved that there would be no stress test — that day.
My call to my daughter was to explore my outburst. I’m usually a good patient — responsive, curious, but compliant. What was going on with the tears and the anger?
My daughter responded that I’d reached a stage in my life (over 65) where insured medical treatment for almost everything was assumed (if you could have 12 tests for cancer, you would want 12 tests). She said, “It’s up to you from now on to say NO to what you don’t want. If you know what the treatment is, and why docs want you to have it, you don’t have to go along with them or it. If you don’t want to have a stress test and you know the potential consequences of not having one, you get to say no to anything that doesn’t feel right to you.”
That wasn’t what I expected. I expected “There, there mom. You’ve been under a lot of pressure and had a lot of tests. Perhaps you’d just reached the end of your tether — temporarily.”
The second occurrence was a visit with my primary care physician last week. She is lovely. She loves me. I know that is a weird thing to say about a doctor who is not your therapist, but I know that she loves me. It always helps. She is 40 something. I am well over 65 (77). She listens. She encourages me. She doesn’t treat me like an old person. Believe me when I tell you that I know what it feels like to be treated like an old person.
She looked at me as she entered what I was telling her in the inevitable Epic computer program (more about that another time) and said,
“I’m going to suggest something and I want you to wait until you’ve heard me out before you say anything. There is a paliative care doctor who has opened a clinic for patients and families of patients with complicated medical diagnoses. The idea is that the emotional fallout from these diagnoses is as important to deal with as the diagnoses themselves.”
Paliative care? My cancer isn’t supposed to kill me. My new heart issues are “common among older people and treatable with medication.” Why paliative care? It is true that there are changes in my energy, changes in my patience and tolerance, changes in my emotional stability. But paliative care?
I heard her out. My emotional seesawing is part of why I have little energy. My diagnoses are conditional. “We’ll try this. It’ll be a lower dose. We’ll try that, we can increase the dose by 200%.” I have more attention than I ever thought I would need from the medical profession — but no assurance that there is cure, end, health.
My daughter is right. I have to decide. My hope, now, is that this new paliative care initiative will support me in making the thorny decisions that come with the end of life. I’m not meaning to be melodramatic. I am only wanting to be as much me as I can be for as long as this is possible.
