This post is as much about the love of my life, Jim, as it is about me. And for those of you who know us well, there’s some things here that YOU don’t even know.
To begin, Jim knows facts. His incredible brain is packed with information, much of it random. Ask him anything and he knows the answer. If he doesn’t, he’ll never admit it. He just makes it up. Then, he goes on Wikipedia and makes a page for it...or doctors up a page that’s there. One time, we were talking about a 19th century writer. Jim said he was a recluse, and when he died, his dogs ate him before the authorities broke in and found the body. Ten minutes after our discussion, Jim showed up with a printout of the Wikipedia page “proving” it. Well, he doesn’t do that anymore...not since I reported him. ;-)
But honestly, he’d be a perfect candidate for Jeopardy.
Some years into our marriage, before our writing career took off, Jim went and got his PhD while I was working as an engineer. Right out of graduate school, he got a job teaching college in Pennsylvania. After that, the mail that came for him was generally addressed to ‘Dr. James McGoldrick’.
The first challenge to Jim’s doctoral status came from our mailman who stopped him one day by the mailbox. The man wanted a second opinion on some over-the-counter medication he was taking for an illness. Jim politely said that he should consult his own doctor.
The mailman (disappointed): “What kind of doctor are you?”
Jim: “A word doctor.”
The mailman then proceeded to show Jim a suspicious mole on his nose. Our mailman was sort of hard of hearing.
It was right about then that I started saying that we have a doctor in the house. It actually started right after I bought Jim a book about Reflexology and Acupressure. Of course, he memorized it all after one reading.
From then on, from bumps and bruises to colds and stomach aches, our boys grew up running to Pop to fix it. They trusted him to have answer to any illness in the universe. Again, if he didn’t know the answer, he’d either look it up...or make it up. Somehow, the boys survived.
Fast forward to 2003, the first time I was diagnosed with breast cancer. (And no, Jim was not allowed to open up either the Reflexology book or Wikipedia.) However, my oncology team at Yale/New Haven Hospital believed that a patient benefits greatly with a wide range of complementary therapies. A dear friend of mine, a Reiki master, drove all the way from Rhode Island to Connecticut numerous times to administer Reiki to me during course of my treatments. Well, Jim watched closely and started reading up on it. Pretty soon, I was reaching out to him for the Reiki. Needless to say, my sweetheart’s reputation grew (both in our household and amongst the local letter carriers). Not only did he know facts, now he practiced complementary medicine (without a license...but don’t report him; the statute of limitations has run out.).
That brings us to now.
All of you who have been following our blog know that I went through four months of testing, with inconclusive results. The imaging tests—like MRI, PET and CT scans—were mostly clear but I continued to have medically unexplained symptoms. I was sick, and I knew I was sick. Thankfully, I wasn’t brushed off by my doctors. My oncologist said at some point that something was definitely wrong, but to pinpoint it, a biopsy was needed. So they went in, found something “concerning” on the kidney. But the results came back, “Nada.”
When my team of doctors came up with the suggestion that since they couldn’t find anything, they’d repeat such-and-such a test in three months, I reached for my in-house doctor. The two of us rolled up our sleeves and went to work. If there’s one thing we know how to do, it’s research. And I do live with a human encyclopedia.
We both knew the Internet is filled with misinformation, especially about cancer diagnoses and care. But at the same time, one can find research articles such as this one from the MD Anderson Cancer Center in Houston: https://www.mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html
“Lobular breast cancer spreads to the gastrointestinal and urinary tracts. Lobular breast cancer tends to spread to unusual sites, such as the lining of the gastrointestinal and urinary tracts. Patients often notice they feel constipated or have changes with urination. Like in the breast, the cancer cells grow linearly and cause these tracts to narrow. It’s like a lasso that tightens over time. Because the cells grow in sheets and not a mass, metastasis is also difficult to detect.”
I had Lobular Breast Cancer nineteen years ago. All my recent troubles have been gastrointestinal. After more research, we learned that imaging wouldn’t identify Invasive Lobular Cancer (ILC).
What did we do next? Made appointments with doctors outside of our team. And couple of weeks later, exploratory surgery found the cancer. Yes, MD Anderson’s article was correct.
Did we diagnose my situation before the doctors did? Certainly not.
Were we proactive in terms of making sure no stone goes unturned? Yes.
Did I have a great doctor in the house? Absolutely.
And the day we sat down with my oncologist to go over the treatment plan, Jim and I pulled our chairs up to the table. The conversation was respectful, with relief all the way around. We knew how hard the team worked to diagnose my cancer, and they knew that I—with Jim beside me—was going to be a hands-on and educated patient.
Since then, I’ve seen how closely Jim paid attention to things when the nurses worked on the port on my chest. And how he watched the dozens of needles going in during my acupuncture session.
I wonder what’s running through his head…
A friend has been kind enough to set up a GoFundMe fundraiser.
Here is the link to that page.
Thank you!