Strive for Five is now We Are All Made of Stars
Let's kick off with a funny story!
Last weekend, Per and I were at the cottage and heard an unfamiliar beep.
We looked at each other, confused. “What was that?” asked Per. “It sounded like it came from the kitchen. Maybe the dishwasher or the refrigerator?”
I got up to check, but the beep didn’t sound again, and nothing looked amiss. “There’s an error message in the refrigerator,” I reported. “Maybe we need to clean the filter or something?”
“Maybe,” agreed Per, and then we promptly forgot about it.
The next day, I heard the beep again as I was in the bedroom and Per in the kitchen. “There it is again!” I exclaimed. “Did you hear it?”
“No, whatever it is, I don’t think it’s in the kitchen.”
“Huh, weird.”
The next time we heard it, Per observed that it sounded a little like an Amber alert. “Maybe one of us has an old phone here that is getting an alert? It definitely sounds like it’s coming from a device.”
We agreed that it must be coming from one of our phones or laptops; and when I heard the beep again driving back from work on Tuesday evening, that theory seemed validated. OK, whatever it is, it must be mine, since Per isn’t in the car with me, I thought, and decided to take a closer look at my phone and laptop once I arrived home.
But I was tired when I got back, and I decided I needed to rest in bed a bit before starting the chicken noodle dumpling soup we had planned for dinner. A few minutes after I laid down, I heard a different sound, like a muted European ambulance:
“Wheee–ooo, wheee–ooo, wheee–ooo, wheee–ooo!” the alarm sounded urgently.
And all at once, it hit me.
“Oh my god,” I said, aloud; then got up and went down to meet Per in the kitchen.
“I know what’s making the alarm,” I told him.
“You do? What is it?”
“ME!” I exclaimed, gesturing at my belly. “It’s my HAI pump sounding an alarm!”
“Oh my god,” said Per, echoing my earlier realization. And I knew in that moment we were both mentally calculating how many days the alarm had been going off without us realizing it was coming from my abdomen.
At this point, my pump hasn’t delivered chemotherapy in over a year; but it still gets filled every four weeks with a combination of saline and heparin, to keep it in working order. If it goes dry, it malfunctions; and once it stops, it cannot be started again; nor can it be replaced, due to the scar tissue and risk of complications.
I finally asked the question that was running through both of our minds. “Do you think it’s too late? Did I kill the pump, because I didn’t realize it had been beeping at me for days? Shit.”
Looking at my portal, we realized it had been almost six weeks since my last pump fill. Had I forgotten to make an appointment? Had we tried to do a longer interval (I remember talking with one of the nurses about going five or six weeks), in anticipation of being filled at my MSK visit coming up next week?
I honestly couldn’t remember—but what I did recognize is that I’m starting to identify as a healthy person, and the pump was simply the last thing on my mind.
For the past few weeks, I’ve been weighing the possibility of having the pump removed. Generally, the recommendation is that you keep it until you’ve been NED for five years; more recently I’ve seen doctors suggest three years since your last treatment. I haven’t made either milestone; but intuitively, I feel like I’m at the point where I just don’t anticipate I will need it. I hate to think about the possibility of recurrence (it feels like tempting fate to even go there), but even if it does, it seems unlikely pump chemo would be part of the treatment.
And physically, it’s starting to bug me. Between higher waistlines, yoga pants not being suitable for days in the office, and menopausal weight gain, something which essentially feels like a hockey puck protruding from my waist seriously feels like the last thing I need.
On Monday, I’ll be back in New York, for my regularly-scheduled scans. Dr. Kemeny has retired, so I’ll be meeting Dr. Connell for the first time; and I’ll ask her opinion about removing the pump. Ultimately, however, I know it will be up to me. So, unless the scans show something unexpected, I think I’m ready to go pump-free. And beep-free as well.
Speaking of which, I got the pump filled the morning after it started to sound like an emergency vehicle. When my nurse accessed it, we found that it still contained about five more days’ worth of fluids—making us wonder why it was alarming for so long and now so urgently.
Maybe it’s just a signal from the universe that my pump’s time is up.
Oh Gina! Here is hoping we can get that out!!!! I sat we because when people I care about suffer it’s a group effort. You are a beacon of hope! Here is to all the good things!