75 days – but who’s counting?

by Carolyn Thomas   ❤️   Heart Sisters (on Blue Sky)

A quotation I like a lot (thank you, Bruce Springsteen!) is this: “You get used to anything. Sooner or later, it becomes your life.”  As regular readers already know, I’ve been a heart patient for a long time, ever since surviving a misdiagnosed widow-maker heart attack in 2008 – enough time to really get used to the idea of living with heart disease.

In fact, that’s 17 years of getting used to saying things like “my cardiologist”. 

In 2009,  I launched this Heart Sisters blog.  That’s 16 years of getting used to Sunday morning deadlines and reader comments.

Then in 2017, Johns Hopkins University Press published my book “A Woman’s Guide to Living with Heart Disease”   That’s eight years of getting used to publishers, editors, book reviews – and one unhinged (now former) publicity manager.

But on April 1st, I learned that the lump I’d found on my right breast while showering was a malignant tumor (called invasive ductal carcinoma – the most common form of breast cancer, accounting for 80 per cent of all breast cancer diagnoses).

So far, that’s only 75 days of getting used to being a cancer patient. That makes me a rank amateur.  No wonder I feel so utterly overwhelmed. 

I’ve completed only one of the 17 three-week cycles of chemotherapy that are part of my treatment plan over the coming year. On my first Chemo Day, I chatted with my daughter Larissa’s longtime friend Erin, who happened to be there that morning for her final chemotherapy appointment. She looked much happier than I did. Maybe after the first dozen or so cycles, I’ll be what doctors call habituated to the routine. See also:  Habituation: “Give me a pain that I’m used to!”

My sister Catherine, who lives about a 90-minute drive from me, came down to be my volunteer Support Person on that first Chemo Day – and then she stayed with me for a few extra days to help organize the impossibly complicated home drug regimen I had to get used to. (I am so lucky to have that kind of amazing support!)  She promises to keep up that schedule for future Chemo Days “for as long as you can stand me!” 

But I’m not yet used to being a cancer patient suffering from what doctors call “chemo brain fog”  – and Catherine’s not yet used to witnessing her sister’s sudden alarming inability to remember nouns, read notes, tell time, keep track of those meds, know what day it is, or understand even the simplest instructions without crying. We are both new to all of this.  When she gets more used to those new sisterly qualities, I’m hoping they won’t be quite so annoying.

Neither Catherine nor I are used to the extreme emotional burden of a cancer diagnosis on both patient and caregiver yet.  We’re learning –  but we’re just not quite used to it.

I’m not yet used to the hours I’ll spend hooked up to an I.V. in  the Chemo Room (about six hours of “chair time”  during that first day). Nor am I used to the LOUD NOISE LEVEL in the Chemo Room (chemo nurses orienting their patients, patients talking to nurses, patients talking to other patients, me calling out to my sister for more ginger ale. . .

And I’m certainly not yet used to some of these brutal side effects (mouth sores, bone pain, severe diarrhea) – which aren’t even due to the chemotherapy treatment, but to the prescription drugs I take to protect my body from the ravages of that treatment. This whole thing seems barbaric to us: chemicals that are toxic to bad cancer cells, while stopping just short of killing off the patient.

I have only 75 days experience in being a cancer patient (yet much of that time was not treatment at all, but sitting in hospital waiting rooms for every possible medical imaging tool available once I was officially diagnosed:  nuclear medicine scans, bone scans, MUGA heart scans, ultrasounds, CT scans, MRI scans and many doctorly appointments.

So, just  to recap:  Today marks 6,250 days since I first heard the following fateful words spoken in the same Emergency Department where my heart attack had been misdiagnosed two weeks earlier:

“Mrs. Thomas, I can tell from your T-waves and your other cardiac tests that you have significant heart disease.” 

And I somehow just got used to living with that.

Image: Phil Riley, Pixabay

♥

Q:  How long did it take to get used to your current diagnosis or diagnoses?   (Use this handy Day Calculator to enter your diagnosis date and today’s date)

NOTE from CAROLYN:   My blog-turned-book,  A Woman’s Guide to Living with Heart Disease is based on many of my 900+ blog posts about women’s unique experiences when we become patients. You can ask for it at your local library or neighbourhood bookshop (please support your favourite independent bookseller) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to  save 30% off the list price).