This has been a very long year for me, and all on top of all the disruptions of COVID last year. At the end of last November—for a “fun” way to end 2020—I was diagnosed with endometrial cancer. My primary doctor (who is an angel in jeans) did the biopsy when I came to her with bleeding, and even though she kept on the lookout for the results, due to the way MyChart posts lab results the second they are ready, I beat her to the draw and learned I had cancer a few evenings later through the lab results on MyChart. Not the best way to get that information! But she called me the next day, gave me her cell phone number and said to use it any time, and to call her that day, as she was not in the office. And she set me up with the proper people in Madison, (which is an hour away from me, and more depending on where in the city I go) from my insurance plan (SSM/Dean) to get started on treatment.
I had begun a journey of nearly a year, and many weeks involved not just one appointment, or even two, but sometimes three. As I described in my last blog post, I spent much of the year “on the ride,” often unable to have time to do my regular tasks, let alone the activities that feed my soul.
One thing I did do, and I recommend it to other cancer sufferers or others dealing with rough times in life, was that, after carefully informing the people close to me, I opened up on Facebook and shared my journey as it went on with my friends there, which led to amazing support, prayers, and sharing of caring energy.
My insurance plan uses St. Mary’s hospital in Madison but also cooperates with the University of Wisconsin hospital. So early in December I went for a consult with a doctor from St. Mary’s who explained how the surgery, then scheduled for Dec. 9, would go. Then I had the fun experience of a PET scan. I had to do all this alone of course, because of COVID, which required the person being treated to come into the hospital alone, and the support person to communicate in the appointment via their cell phone, so this left my husband in a cold car while I had appointments. This was the case until literally the day before my actual surgery in March (more on that later). Based on the PET scan, when I met with the UW doctor who was to assist, he said there was one lymph node that had lit up, and so the whole procedure had to be moved to UW Hospital (apparently St. Mary’s was unable to deal with this thing? I doubt it). I have referred to this moment as a highjacking of my cancer treatment. Fortunately in the end it was only the surgery that was highjacked, and especially because of later events, the rest of my treatment was through St. Mary’s and SSM/Dean. More on that later.
So now, because the situation was so serious, um, they put the surgery off for three weeks, until the day before Christmas Eve. I had a less-than-positive experience meeting the doctor who was to do the surgery—when I asked her if I was going to die, her response drove me to tears: “I’m glad you asked, yes, probably.” She later explained that was because I had a virulent type of cancer (serous) that tends to keep coming back, but the damage was done. (In my later encounters with her, the actual pre-op appointment and the rounds after the surgery, she had other people who did most of the talking, as I think the word got out what she had said to me, via the nurse maybe, who found me in tears after the consult.) I spent much of the day before the surgery date on the phone with the nurse preparing for the surgery. But the Saturday before, I had had the required COVID test, in yet another location, and it came back positive. I was, in fact, positive that this was an error, and had another test the next day that came back negative. And everyone, then or since to this day, including the contact tracer on the phone, all my doctors except for the surgeon and UW Hospital radiation department, agrees that the negative test outweighs the previous one. Everyone, that is, but, apparently, the anesthetists who were to be part of the surgery. So the night before, after all the preparations, the surgery was canceled.
The surgeon called me the next day (Christmas Eve) and said the hospital’s policy was to wait three weeks after a positive COVID test. I reminded her that the next day I had had a negative one, and her response: “How do you know the negative test wasn’t the false one?” But, she said, we would start with chemotherapy and do the surgery after three treatments. (I later learned that the surgeon had then left on three weeks’ vacation, so was unavailable for any further consultation.) So that was the background to our Christmas celebration, which was of course just my husband and me, because of COVID. Anxiety through the roof. Christmas Eve about 4:30 PM I apologetically took my primary doctor up on her offer and called her at home, in tears about all that had transpired. She comforted me and made some suggestions.
Oh my goodness, I didn’t plan to go into all this, but here we are, deep in the story. On Monday I started calling both the UW Health and SSM/Dean cancer contacts, asking about when the chemo would be set up. Each clinic blamed the other for not acting on this, and I went round and round, until finally the lead endometrial cancer nurse at SSM/Dean took over and made me an appointment with the “gyn/onc” (gynecological oncologist) there, for 1:30 on New Year’s Eve. Finally something happening. As it turned out she was a wonderful person/doctor and met with me after the clinic had officially closed for New Year’s Eve. Her first words to me were: “I’m so sorry for what you’ve been through so far.” And set up my first chemo for the next day, New Year’s Day—and because it was a holiday it was done at St. Mary’s hospital, and I had a whole room to myself—but as usual, my husband had to sit freezing in his car in the parking garage, for most of the day, as the chemo time was lengthened due to emergency delays at the hospital and procedures for the first chemo.
Two weeks later my hair started to fall out, and it’s just growing back now.
Thereafter my treatment went well. My next chemo was at the doctor’s office, then the third was at a hospital nearer my home, supervised by another type of oncologist that did this kind of trade with the “gyn/onc” to keep patients closer to home. Then the surgery, finally, on March 10. The doctor with such a poor “bedside manner” was an excellent surgeon, and the results were that outside my uterus, which was done away with (I’m 74, so no need for it anyway), there was no cancer in any lymph nodes. The three chemos had apparently done away with anything suspicious.
The one advantage of treatment at UW Hospital was that I was eligible for a free wig and fitting of said wig by an actual hairdresser. I also bought another one I liked, and had already ordered two others before I found out about the hospital wig salon. But as it turned out, I didn’t wear them much, as they always felt kind of fake to me, like I was in disguise or something. I preferred the pretty pre-tied scarves I found online.
Then, after healing from surgery, three more chemos, these again in a different place, the more local doctor’s other office in nearby Fort Atkinson. Pretty much wiped me out, especially by the last one, but it was worth it. What’s weird about cancer, caught early enough to treat, is that you don’t yet feel any effects of the cancer, but wow, the treatments/cure are rough! It took me four months to recover from the longest side effects of poisoning my body to cure my cancer, which was bone pain in my hips and issues with balance.
But meanwhile, I was asked to take four sessions of brachytherapy. It is a less burdensome form of radiation, which I won’t describe in detail, but provides local radiation where it is needed.
The same week I ended that I began special PT for cancer patients. That was totally worth my while, as it helped me with my strength and balance issues and also a shoulder that has turned inward and a leg that has turned outward, due to the position they put me in for the surgery.
And that was the final end of my cancer treatment. A CT scan in July had found no evidence of cancer remaining, though I must always be wary, because of the nature of the type of cancer and its tendency to come back, maybe this time in an organ that can’t just be dispensed with, and I have regular check-ups into the future. But for now I’m healthy.
I have still been moving so slowly, and taking naps every day with my “nurse cat,” who insists, as does my body, but I get ever-so-frustrated at the tasks that pile up and I don’t get done. But finally I decided to take the couple days a week I used to take to devote to writing, including this blog project and the latest book I had started on, and see how it goes. So here I am again, on my blog, whether anyone reads it or not (I know a few do). Hoping to keep it up.