Decisions, decisions

The snow in Boston is crazy high, the temperatures bitterly cold, and the kids don’t have school.

Trudging through the backyard

Though it can feel like we are trudging through, it is all actually fine. I love hunkering down with my family, the snow is beautiful, and I bought a super-warm blanket. The only glitch is that, in the past few days, I caught a cold that includes a dry cough with a really sore throat and fatigue.

No big deal, for sure. But here is the scoop: I am scheduled for chemo tomorrow. I need to decide whether to go ahead with it.

Last time I went in with a cold (about two years ago), here is how it went down:

I signed into Dana Farber, where they always ask if I have a cold or flu. When I said yes, they gave me a mask and sent me to my first appointment, which is where the nurse accesses my port and draws bloods to get data.

I told the nurse that I was not feeling well. He or she was sympathetic but not the decision maker. They accessed my port, drew my blood, and sent me (needle in my chest, tube dangling) to my next appointment, to see my oncologist.

My blood numbers were good, so my oncologist told me that he sincerely believed that I should do chemo. Besides, he reasoned, I was already accessed (meaning, I had the needle in my chest, ready for chemo….).

By then, I had spent two hours at Dana Farber. I was tired and in no shape to disagree with anyone who remotely felt like they had authority. I moved forward with chemo.

This happened every two weeks for quite awhile.

As a result, I had no voice (not even a whisper) for over a month and really couldn’t shake that cold for much longer.

But I understand their point of view: Of the two illnesses, the cold is simply uncomfortable and will eventually move on. Cancer, who knows.

From my point of view, having my body deal with chemo on top of this cold is a lot. I also know that, before I have the conversation with my doctor, I need to start out with my own point of view.

Here’s what I know:

  • My oncologist is doing his very best.
  • His medical knowledge far exceeds mine.
  • My throat is so raw that inhaling through my mouth causes pain, as does swallowing.
  • I cannot imagine vomiting.
  • I will have a CT scan in March and want to do as much as possible to keep things stable / improving so I can take a break.

So, I have to develop a going-in position. Then I try to have this conversation over the phone, rather than go in and have my body ushered through the process while my will weakens. But first things first.

Here are some options I see:

  • Postpone chemo until Friday, if they can take me then. (That is another day when my doctor sees patients.)
  • Postpone chemo until next Tuesday. This creates a complicating factor impact on the rest of my life, as it changes my chemo weeks and off-weeks, and I plan important things for those off-weeks.
  • Postpone chemo for two weeks. This doesn’t seem like a big deal, but after that chemo session, I’m taking a three-week break, so that isn’t an ideal solution.

My oncologist may have other suggestions.

I feel a bit like I am playing roulette, which is scary. But I also know that I have to take responsibility for my decisions and that ultimately, I know that my doctor will do what I want. I just have to be clear about what I want, and listen to his point of view as well.

If you can see a good solution, do share!

I would love to, for example, hand this over to someone who both shares my values and knows more than I do. But this is my circus for sure. Advocating for myself does not come naturally, though definitely a good thing for me to learn.

I hope you have easier decisions to make today, and if you have difficult ones, I’m hoping you can find the answer that works for you.

Much love,
Marie

2 thoughts on “Decisions, decisions

  1. Marie,
    I’m reading a book called playing big. She’s a good writer and I’m only a few chapters in but… I’m on the section about inner voice. We have two, age says. The inner critic that we need to tone down, calm down and laugh with and then the inner voice of our more while self. What’s she telling you to do? Supposedly if you listen, you can hear her. Sending you love. We are on a Tarmac. Started at noon in boston. 8pm and only in NYC on the Tarmac pending maintenance. However, it’s looking good. The house is leaking, we are tired but florida and grandparents and cousins await. Fingers crossed. Big hugs,
    Tea and honey
    Xo h

    TheEditorial.com

    >

  2. Quite a predicament Marie. I’m in a much less significant one. My glaucoma doc scheduled me for carving a hole in my eye three weeks ago. He said I had a choice with my numbers: do something (surgery) or ‘let nature run it’s course’. I was kind of shocked at his bluntness. I had an important project at work and schedule my surgery for the 17th (your next chemo day) and low and behold a monster ice storm blew across the state (you know the embarassing parameters). Bottom line – surgery postponed. In retrospect now by default I’ve chosen 4 weeks of “Nature’s Course” and that certainly wasn’t my intention but it’s telling me I should have showed up for surgery at that earliest opportunity. Peace to you and let’s hope that the cold finds it’s way from you over night.

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