Cancer

Have you been wondering where I’ve been?

If you are a reader of my blog posts and newsletters, you know that in 2012 when I turned 60, I threw myself a party, stopped dying my hair, and got sassy. That’s my true story. I spent some time contemplating being 60 and decided that since my mother was 90 that same year, I should expect and prepare to live for another 30 years. 30 years of 90 would be a third of my life so I launched YourBestThirdThird.com to document my own way of living my best thirdthird and to inspire others to design their thirdthird. I firmly believe that the thirdthird of our lives (ages 60-90) can be the BEST third of all.

Almost 10 years later, October 2021 brought an unexpected glitch in my plans.

Cancer.

In fact, a relatively rare form of bladder cancer that is considered terminal. A cancer that brought intensifying pain, hospital stays, scans, chemotherapy, blood transfusions, and an array of doctors appointments to keep and prescriptions to manage. Maybe my plans to live to 90 would not go as I had planned.

With no remembrance of when or where I read it, I had a thought stuck in my head, “Rarely is a diagnosis of cancer a medical emergency but it is often made into an emotional emergency.” I had read that long ago and determined to remember it if I was ever in the situation of receiving a cancer diagnosis myself. My pragmatic nature pulled that out of my brain immediately when the doctor came into my hospital room with a CT scan report. “Okay, so what do we do now?” I asked him. “I am fine with this, I just need to figure out how to approach it.”

As my team of doctors grew, no one was as laidback about my need to forge ahead as I was. I was encouraged to schedule a biopsy in 3 days. After that, oncology appointments were set and pretty soon (though with a few glitches) I was scheduled for more tests and then chemotherapy.

To say that a diagnosis of cancer changes your life is an understatement.

Now, I am eight months post-diagnosis and I am finally feeling up to writing again. For 5 months, I just did not have the energy to string words together. I had constant pain and could not get comfortable unless I was laying on a heating pad and taking pain meds. But now, I can share some of what it has been like to have my plans for living another 20 years, until I am 90, abruptly altered.

Patience is required.

There is a lot that I didn’t know about my new life. I asked questions, but I let the details sort themselves out as the days and weeks went by. The professionals (doctors, nurses, pharmacists, radiologists, and technicians) knew more about my medical condition. I, however, was the one living with my body and my mind. I was the one who had to sort through and make sense of all the knowledge and opinions of the others. I kept notes and had others listen in to conversations and attend appointments with me. I learned that I didn’t need to feel like I had to have an immediate opinion or decision when a new topic was broached. I gave myself time to process a LOT of new information.

Who provides my care is my choice.

When I was first diagnosed, my husband and I agreed that we would go anywhere we needed for great care. We live in a smallish town in east-central Illinois and while there is a large clinic here, we know others who have traveled to St. Louis or Chicago for specialized care. We have family in Phoenix where Mayo has a clinic. We knew we could go there out there. Convenience was not our first consideration.

As it turns out in my case, there was a urologist as a temporary hire at the hospital I was in who was quite experienced internationally. After a quick google search and reassurance from other professionals at the hospital I was in, I became comfortable with him doing the biopsy and diagnostic surgery. I actually grew to trust his experience a lot over the next months and was disappointed when he moved away.

Settling in with an oncologist was a longer process. In an unfortunate scheduling glitch, I was delayed more than two weeks in talking with an oncologist, even though I had received the results of my biopsy in my patient portal right away. Because of vacation schedules, I actually saw three different oncologists in the first six weeks. One, in particular, had a very different approach than the other two, more aggressive and with some immediate (though fleeting, as it turned out) results.

After two appointments in Chicago, many phone calls with family members who had applicable experience, and sticking with the local doctors, I was able to finally get comfortable with the oncologist I had started with, right in our town. He is the one locally who has the most experience with my type of cancer. In the end, his experience was most important to me.

Ask for what you need.

One reason I hesitated in settling in with a doctor was that I had some pressure from family members to switch. Initially, I just wasn’t getting the information I needed to be comfortable with my treatment. I had complications with chemotherapy. Treatments were delayed. I was scheduled for blood infusions I didn’t really understand. I needed better communication.

One day when I was delayed once again with chemotherapy, I had a mini-meltdown with a nurse in the infusion center. I felt like I had a ticking time bomb in me that we were not doing anything to defuse. She told me I could change doctors at any time and that I should feel comfortable with my care. After that, I had a talk with my oncologist and told him I needed better communication from him. I had sent a question that was not easily answered through the patient portal and I had waited 3 weeks for an answer. I didn’t know the answer was complicated. I didn’t know he was considering how to answer. I didn’t realize at the time that my cancer was relatively rare and that my response to accepted treatment was outside of the norm. At my next appointment, I told him that I needed to know he had received my communication… even if it was to say he was considering his reply and would respond later.

He assured me he would try to improve his communication. I assured him I was trusting in his knowledge and care. We have, happily, come to a comfortable relationship that includes mutual respect. I am glad I stuck with him.

Keep asking for what you need.

My local cancer clinic does not have a care coordinator for me. I kept wondering who would explain things to me or let me know what was next or tell me what to expect. Finally, I started asking the oncologist for referrals to Physical Therapy and Palliative Care. I made my own appointments with the urologist when I had questions. I set up a telehealth call with a noted Urologic surgeon in Chicago. When I met with the Radiation Oncologist and he mentioned that my kidney was enlarged and “we should do something about that,” I pushed for a nephrostomy tube after researching my options.

As it turned out, PT was not really helpful since my pain was the result of nerve pressure from the tumor. The nephrostomy tube is in and a bit of a pain in the rear (literally, it is in my back). The Palliative Care team is my best advocate. They care. They call me and ask how I am. They suggest new solutions. Right now, I give them huge credit for my improved condition by figuring out which non-narcotic drug would help me sleep.

If you are sick, you are sick.

The cancer I have is aggressive. I had a pretty quick decline in my health. I am used to being fit and active. I like to eat healthily. But early on, I was reduced to being in bed most of the day, no exercising or fitness efforts. I had little appetite and frequent nausea. I lived on mashed potatoes and ice cream for several months. And I allowed myself to stay in bed.

My husband and son have been tireless caregivers to me. No request was denied. No effort seemed too much for them. Dave drove me to every (many) appointment and took me to the ED several times. He stayed on top of my meds and all doctor discussions. Joel would fill my water bottle, just the way I like it, feed the dog, and check-in with me daily. They let me be sick, never once suggesting I should try to do more or that I could get my own water/meds/food/etc. Their care-full approach with me gave me permission to be sick and still lets me rest and accept my illness.

Decide who needs to know.

I have been quiet about my cancer. Looking back, I think two things contributed to me wanting to keep my news close to home. One is that I didn’t know what it meant and I needed to process my situation before discussing. I was learning as I went and didn’t really want to have a lot of people to keep up to date. The second is that my energy was very, very low. I just did not have the energy to talk with people beyond our kids and a few close friends. Now, word is out and more people know that I have a terminal illness. I am comfortable answering questions and talking about it. I haven’t been hiding… just waiting.

I am better now, thanks to a change in treatment. I am responding well to immunotherapy. I have no pain and no more need for opioids. I don’t have nausea and my appetite is better and way up. The side effects I have from immunotherapy are much more manageable than the ones from chemotherapy. I am able to drive myself to doctor appointments. I have even been to my office and have had lunch with friends a time or two.

Frankly, cancer is not a diagnosis any of us should be surprised to hear, especially if we are “older.” In the US, almost 2 million people will be diagnosed with cancer, and a quarter of those people will be between 65 and 74 years old. When a friend of mine told her nurse/daughter that she was surprised I had cancer since I have always been something of an “earth mother,” careful with diet and exercise and avoiding processed foods and chemical exposure, her daughter told her that aging is the number one risk factor for a cancer diagnosis.

I asked one of the doctors how someone with bladder cancer will die. He told me (organ failure, sepsis) and went on to tell me that I should not think in terms of years, but of months. “It could be 24 months or 36 months,” he told me. “Just not the 12 years you just referred to.” What a gift his transparency was. I am pragmatic if anything and I value honesty above all. Other doctors echoed this… months, not years.

When I asked the surgeon last week if this new and unexpected response to the new treatment means I might go back to thinking in terms of years not months now, he kindly said, “You should consider yourself as having bonus time.”

So now, I am writing again and working on some projects that were set aside eight months ago when I became too ill to write. I have helped to plan the garden and I’m looking forward to fresh veggies and flowers soon. I enjoy cooking with Joel and we are finding new gluten-free recipes to try. I am even beginning to think of a trip Dave and I might take. Or a ladies’ trip to a friend’s home in Michigan.