A finance executive and avid kayaker who was used to dealing with the unexpected in her work and on the water, Jane was tossed in the rapids when she was diagnosed with a rare and aggressive form of uterine cancer at age 56.
In 2009, after a hysterectomy for excessive bleeding—which had been attributed to fibroids and peri-menopause—I was diagnosed with leiomyosarcoma of the uterus. There were no other warning signs, no family history, so my experience was a little bit unusual. Most uterine cancer has a 90% cure rate, but mine is different. This cancer is highly unpredictable and highly aggressive, and my chances are 50/50. When the truth sank in, it was not particularly pleasant
The shock of the news emptied my brain and robbed me of the ability to think, process, and query the way I previously would have. I don’t think I would have believed that was possible if you had told me before I experienced it. That’s why it is so important that you bring somebody with you for all of the doctor appointments. Whatever level you were used to functioning at, you don’t function at that same level during cancer consults.
Tough Decisions
The first several months were most stressful; it took a week for the lab results to come back, then another week for a doctor to return from vacation. I’m not very good at waiting, especially once I know I had to do something. Because I’d already had breast cancer and had a relationship with an oncologist, I checked with him. But he knew nothing about my kind of cancer and referred me to a physician who specializes in sarcoma. There was also an expert at Sloan Kettering, whom my gynecologist recommended, but they had different ideas about how I should be treated, and different personalities. Because this cancer is so rare, there really was no data to prove either one right or wrong. It was hard to make a decision.
When I finally chose a direction, I had intravenous chemo and major abdominal surgery to remove some stuff that he recommended. Then I had intraperitoneal (IP) chemo, an ultra-high-dose of chemo delivered right to my abdomen. Then I developed appendicitis and had to have an appendectomy, then they found a spot on my lungs, so I had a thoracotomy.
After that initial surgery in 2009, I had additional surgery in 2011, with more IV and IP chemo, and again in 2013, followed by radiation and more IV chemo. Until 2013, I did my treatment and then went back to normal life. I even kayaked the Grand Canyon. But 2013 was more major, and I was in the hospital for three weeks. Between the radiation and assorted recurrences that triggered these surgeries, doctors had removed bits and piece of my small bowel, colon, pancreas, spleen and gall bladder and my digestive tract started really not liking food. That has been a much more limiting factor because I wasn’t able to eat much or digest what I did eat and was losing weight. That’s been a more significant piece of the equation and gets in the way of work and travel.
Shift in Thinking
I never really felt isolated, although it’s very difficult for anyone who isn’t going through it to fully absorb what it’s like; in some ways, I think it’s worse for the people who love an individual to watch a person go through this because they feel so helpless, while you are occupied with coping and dealing, which can be a distraction of sorts.
I can’t imagine what it would have been like going through this alone. I had a very close support network of family and all sorts of friends that I could talk to. Some provided emotional support, others I turned to for analytical advice, and one close friend, a physician, offered interesting insights that helped me make the tough decisions. On good days, it was like nothing happened, and on bad days, I just coped the best I could.
One of the more significant changes in life, from pre-diagnosis to post-diagnosis is the complete shift in thinking that there is no such thing as long term; I basically lived scan-to-scan for a good six to seven years. My time horizon did not extend beyond three months until the time between scans lengthened to every six months in 2016. I’ve had nothing but clean scans since 2014 and to a certain extent I give myself permission to think beyond the next scan, but it’s definitely not the status quo.
Limited Horizon
The hardest part is dealing with mortality, which was really front and center for those first six years. At one point they weren’t even sure that I was going to pull through. No one likes to face mortality, so it wasn’t something I talked about a lot, although it was something that I mentioned with selected people a few times, but there really wasn’t much to say about it. You do what you do and it will happen or it won’t happen. Some days, before my scans, I would take a sleeping pill because I wasn’t going to be able to sleep otherwise.
I still have something of a limited time horizon. I was extremely healthy, and if I look at my family tree in a pre-medical intervention world, they lived to be 80+ across the board, and capable of taking care of themselves until almost the bitter end. My mother is 92. Do I think that is in the cards? I don’t. Perhaps I always had a false sense that I would follow in their footsteps. But I can’t believe that the roadwork that I have had done over the last 8 years, even if I stay clean, has not impacted that trajectory in terms of just wear and tear on me.
While I was interested in a greater work-life balance when I began working at my last job (from which I retired in 2015) once I was diagnosed, it became a job with medical benefits. I never did less than a thorough or complete job, but when my boss wanted to get me more recognition, I said it’s not worth it if I really have to put myself out to get it. And, in terms of making decisions about certain retirement things, I opted for maximizing sooner rather than later. Maybe I will make it to my mid 70s, maybe not.
Uncertainty of Life
You can only cope with the cards you are given and make the best of things. Switching my thinking to rolling with things has been hard after being in control for so long. But there are certain things I need to be mellow about. If you have a biopsy, you have to wait a week to learn the results. There’s nothing you can do about that. However, if I call someone to make an appointment and they don’t return my call, I can do something about that. I am still Type A in those situations. There’s an old nursery rhyme that I have always kept over my mantle:
For every trouble under the sun,
there either be a remedy or there be none.
If there be one try and find it.
If there be none, never mind it.
Life is more uncertain than you realize. While the proverbial truck could come out of nowhere and plow into you, you manage to assume you have a degree of control. But you don’t. You build an entire structure around things that you think are certainties when they really are not. And cancer blows that all up. Suddenly you deal with uncertainty on a regular basis. Did the chemo work? We have no clue. I got a clean scan the last time, will I get a clean scan the next time? No clue. It is what it is. It’s wasted energy to try to build on quicksand; and you don’t have that energy to waste.
Jane passed away in October 2020 at age 67 from the leiomyosarcoma she had lived with for eleven years.