Guest Post: Linda’s Husband
Linda and I have been together for over 50 years, and during that time, we’ve shared many challenges, successes, obstacles, and disappointments. Through it all, we’ve supported each other as best we could.
After several years of “snowbirding” to Arizona from Washington State in the wintertimes, we moved permanently to the desert in 2016 or so. Establishing medical care in our new home meant complete physical exams. While Linda got good marks, I was found to have elevated prostate-specific antigen (PSA) levels and received a diagnosis of prostate cancer. Fortunately, it was not an aggressive type, so under the care of my urologist, I went through several years of watchful waiting before I would need to undergo surgery or radiation therapy. Throughout this worrisome time, Linda was unconditionally supportive. In late 2022, the time had come to decide on a procedure to stop the cancer. My urologist suggested radiation therapy or a relatively new procedure called HIFU, or High-Intensity Focused Ultrasound.
The radiation therapy was 9 weeks of 5 days a week, or HIFU, a one-time outpatient procedure. I opted for the one-time procedure, even though our insurance did not cover the $25,000 cost. Sadly, a couple of months after the procedure, we learned that my PSA was on the rise and that the cancer was back. This meant that my only option going forward was radiation therapy, which I started in the spring of 2023.
lI mention all of this because it was in early 2023 that Linda’s trouble swallowing started in earnest, and the weakness in her hands began to become troublesome. She had consulted with several doctors, and they referred her to speech therapy for her dysphasia and dismissed her weakened hands as a symptom of old age. Unfortunately, the speech therapy did not provide much relief for the dysphasia. However, she decided to visit a hand clinic about her weak grip. It was challenging to get an appointment with the doctor, so she scheduled with a Physician Assistant (PA). To this PA’s everlasting credit, she recognized the signs of a bigger problem and referred Linda to a neurology diagnostic Lab. She got her preliminary diagnosis of IBM in early 2023, so we were dealing with two major and frightening medical issues at the same time.
We’d never heard of this disease, and as it turned out, neither had most of the medical community. We have made it our mission to inform everyone we meet who has any possible connection to the medical community about this disease.
Meanwhile, Linda, as she has always done, decided not to treat her situation passively. She set about to do her best to find ways to arrest the development of her symptoms as much as possible. This included researching the available information about IBM, which turned out to be minimal. During this research, we came across an article discussing hyperbaric oxygen therapy (HBOT). A quick Internet search helped us find a local source for this therapy, one run by a physician, so we scheduled an interview. A physician must approve this therapy, and he agreed that it could be helpful. After several weeks of daily treatment, Linda’s dysphasia had measurably improved. She continues to do two treatments a week.
Over the last couple of years, there have been multiple incidents, some positive and some not so positive. Linda has suffered two TIA’s, both requiring hospitalization. She’s had two falls, one causing a broken elbow that involved extensive surgery and a 5-day hospital stay. And not surprisingly, given her stress and various rough-on-the-stomach medications, she ended up with bleeding ulcers and was in the hospital for almost a week due to severe anemia.
Despite all of this, Linda has remained steadfast in trying to maintain what strength and ability she still has. This is one of the things that has always amazed me about her - her indefatigability.
I could see that Linda’s initial reaction to hearing her diagnosis was near total devastation. Then, subtle forms of anxiety, anger, and frustration at being told she had a disease for which there was no treatment or cure. The diagnosing doctor said, “It won’t kill you, but it will be inconvenient”. He obviously won’t be nominated for having a good bedside manner and is no longer Linda’s physician.
I, too, have had an emotional rollercoaster over her diagnosis. I’ve been angry that this unfair condition happened to the woman that I love, not to mention that the best the medical community can offer is to measure the progress without offering any promise of a treatment, now or in the near future. I’ve felt the fear of not knowing what the future will bring, including whether or not I will predecease Linda and be unable to care for her. I have profound disappointment in the lack of knowledge about the disease in the medical community.
But I also feel immense pride in how bravely Linda has faced this daunting diagnosis and how she has volunteered to help others dealing with this and other degenerative diseases.
The good news is that at present, my cancer seems to be in remission. That has eased my worries about being alive and well enough to care for Linda. I’m determined to be the best support for her, my partner in life, that I can be.
I know she loves writing this blog, and I appreciate you taking the time to read it.
—Fred
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
We have an “affiliate” bookshop store HERE where you can find books Linda has read or that look helpful for folks dealing with chronic diseases of various kinds. We get a small financial reward if you purchase
a book through the shop. It also helps support independent booksellers. Thanks!