I am two days out from my third AC infusion. A woman from my health insurance company called me today. She calls every couple of weeks. I am not sure why she is calling me. She asks me how I am doing and I tell her and my guess is that there is some evidence-based practice guideline that says getting cancer patients to describe how they are feeling to a healthcare-adjacent person produces a more positive attitude about cancer. This is not true for me. I don’t know why she’s calling.
My second infusion was scheduled to start at 11:40, done in three hours, Deb was taking me home on the Q train, I should have been on my couch watching Bachelor in Paradise by 4pm. But on Sunday when I was taking a walk with Chris and Karen after brunch, totally casual easy stroll to the entrance of the High Line, my heart rate suddenly pulsed to something like 180 (as registered on an iPhone so take that for what it is), you could see it bouncing around in my neck, flushed, shortness of breath, all of that. We called the hospital. Two hours later a doctor called us back and told us to call the hospital again if it happened again. Why would I do that? I asked. I’d forgotten by the time I was talking to my oncologist. Karen forgets nothing. I am beyond lucky to have her, beyond, and I won’t forget it. It turns out that the A of AC chemo is “cardiotoxic,” a word the woman from the health insurance gave me today, so it’s good that she called after all. I was sent for a CT scan down in radiology after my three hour infusion.
I don’t like going to radiology. You can tell working conditions are worse in radiology, high volume, no relationships to patients. It’s always crowded and everybody’s mad. There are so many children with worried parents. I am so relieved I am the person who is sick and not my child. I did not know this before, but a CT scan requires an IV that injects a contrast agent into your blood so that the scan can more clearly “see” your heart valves. I had cancer in the lymph nodes on both sides of my body. If you stick a needle in my arm, I run the risk of developing lymphedema, a painful condition where my arms swell up with fluid. So, no IVs in my arms.No needle sticks. No blood pressure cuffs. This is a bigger issue than you might expect, to have no good arms anymore.
I have a port for chemo on the left side of my chest, both because AC can burn out your veins and because of the lymph nodes thing. Can you use my port to inject the contrast? Nobody knew. You can if it’s a power port. Is it a power port? Much disdain for me for not carrying my port card with me everywhere so we could consult the port card to see if it was a power port. (I thought you told me to put my port card in the cancer binder you gave me for everything.) I knew it was a power port. I blogged about it on this very blog! I think I used the brand name. The nurses knew it was a power port. Power ports are the only kinds of ports we put in here. The doctors were fuzzy. Port-a-wha? Drabownsky? Who? I don’t know how this isn’t in my medical record. I mean, really, why bother with it at all if it can’t tell you about all the machines in my body. So I had X-rays. If it’s a power port the letters “PT” will be somewhere on the port. I stood there hungry and thirsty against a cold metal plate while my body was moved into this position and then that one and then another one until finally, the PT showed up. It was a power port.
It’s true what they say: the contrast fluid will make you feel like you just peed your pants. You didn’t. Don’t sit up rapidly to check or you’ll bang your head on the scanner. (I didn’t do that.) I was home by 7:30. But as Deb said, we planned to spend the whole day at the hospital, we didn’t have other plans, and that’s just what we did, we spent the whole day at the hospital.
Other things happened this week too. It is amazing how far away and long ago those things seem now. We had our first executive committee meeting of the union with me as president. I need to work on time-keeping and our agendas need to be shorter. I want us to talk less and listen more. We unanimously agreed to send ten of us to the NYC Troublemaker’s School. I’m happy for that. I scheduled a lot of instruction sections. The kid’s at camp. I received so much love in the mail.
Today is Friday. The steroids that give me a semblance of my ordinary self have worn off, I am a remnant. And I know it will pass because all things do with time but that does not mean the present is not also what it is, a bit cloudier and weaker, both hungry and not, moving, but not very fast. And here come a string of days I will be glad to see behind me.