Summer 2021, doing double duty was getting to be almost too much so we decided to go to a financial advisor to look at when I might be able to take early retirement from my full-time job. I thought I was anxious to concentrate on the convenience store/deli and grow my catering business. We were thrilled to hear that we were actually already in a position financially for me to retire. Great news but yikes! I wasn’t mentally ready to pull the trigger. I was really questioning walking away from the insurance benefits and my customers at that time. We decided I would finish out 2021 then give my boss notice after the first of the year. For so many years my job was who I was and I needed time to work my way out of that.
Scott and his brother operate the farm together and always took turns going on vacation in July. While managing the farm single handedly for a week, Scott found himself handling a series of unfortunate events that caused higher than normal levels of stress. Fall on the farm always meant a very busy silage season and 2021 was no different. Day after day of feed being delivered into the late-night hours and being processed to ensure it would remain a safe feed store for the animals in the coming year. After the normal month or so of that, Scott found himself suffering severe back pain from what we believe stemmed from the long hours in the equipment and likely lingering effects of the stress he experienced in July.
Eventually back pain turned to hip and groin pain, moving to his chest around Christmas time. He passed his stress tests with no problems and tests showed his heart was in great shape. It was when his pain morphed into severe headaches while we were trying to enjoy our annual sun-cation in Cozumel in February of 2022 that I started to panic. I really feared he was going to not make it through the night a couple times; something was seriously wrong. Unfortunately, even though regular visits to his hematologist showed that his platelets were dropping despite taking him off his medication no one realized that all these problems were all related.
After our return from Cozumel, we immediately sought advice from our local family doctor followed by another appointment at his Hematologist/Oncologist (H/O) of ten years. While the specialist chose the wait and see in another month approach, thankfully our family doctor recognized that Scott was a very pain tolerate man and that if he was coming in there was something seriously wrong. The situation was not in his wheel house yet he continued to order a variety of tests to rule out possibilities.
It didn’t take long before news of his health issues started circulating through the family. Still wrestling with memories of losing Gordon (Scott’s father) to Multiple Myeloma in 2018, there was chatter pretty much immediately about our need to go to Mayo Clinic. Everyone felt that we needed to leave our local health care network that hadn’t been able to save dad and pursue answers from the experts. The H/O’s failure to realize the severity of the situation led me to push Scott and pursue the recommendation to get an appointment at Mayo.
Today I whole-heartedly believe that if we had stayed with his local specialist that I would be reflecting only on a life that had been and not a future. Weight was falling off him, his pain was unbearable and now traveling; resonating in different parts of his body all in the same day. After years with his blood platelets nearing levels of eight to nine hundred, they were dropping without the aid of hydroxyurea and now heading into dangerously low levels. His hemoglobin was also dropping rapidly. These were also key indicators of Myelofibrosis. Finding the enlarged spleen was eventually the final clue that led to a diagnosis.
It’s true that at the time we were frustrated with the insurance company as they were seemingly holding up the process. In hind-site I think they were looking for our specialist to work through some basic groundwork before ordering expensive tests such as the PET scan and that was not happening.
Before going to Mayo; early in the process of elimination, potential causes were uncovered and systematically ruled out. I’m sure that is pretty common. You will likely receive findings that are inconclusive or lead you down the wrong rabbit hole. For Scott, early tests showed findings of metastatic bone cancer; thankfully, ultimately they determined that was not true. It’s best to keep an open mind and not get too wrapped up in any single test result as one result can be from many possible causes. While waiting for answers, I did a lot of my own research as a coping method. I realize that could work out badly for some but for me it was helpful. I have pages of research information and it has paid off several times over the months. Knowing what the blood numbers meant and being familiar with a lot of the terminology allowed me to add input and know what to tell doctors about his symptoms as things changed throughout the process. I also read that if you find “bad” or scary information that you shouldn’t share it with your patient. The less they have to worry about the better. I found that to be very true. Only a fraction of what I read or worried about actually happened so I’m glad I never shared it.
I think it took about a month for us to get into Mayo Clinic but it felt like forever. Once we got to Mayo Clinic, our insurance was no longer an excuse and tests started happening on day one. You aren’t required to have a referral to get in. Prior testing is reviewed and not wasted time. When we decided to have his transplant done at University of Michigan, all the information from both Bronson and Mayo Clinic was all able to be shared through MyChart and available for doctors at U of M.
As I reflect on the past year and most importantly the eight months, I think the most critical things I can pass on is to be open to searching out the experts, don’t feel trapped by your local health care system. Stay positive no matter the situation. If family hadn’t pushed us to look outside of our normal boundaries the outcome may have been much different. A person can’t do this alone either; having someone to help give doctors an honest account of the symptoms and situation is critical. When in pain, you can’t possibly remember all that is happening to your body; you’re trying to get through the pain and not memorize what it was like. Finally, we have heard numerous times that Scott’s continued positive attitude and drive to recover from this will take him just as far as all the procedures and treatments. Mind over matter.
I am also amazed at how things have a way of working out. What if I had retired and no longer had the premium insurance coverage that we so thankfully have today. Ultimately, delaying my retirement will allow us to keep this proven coverage through the end of next year. What a Godsend. The series of life’s unfortunate events unknowingly leading you to a brighter future.