My last column dwelt on both self-care and self solve. Unfortunately, February was one heck of a month with too many doctor appointments. Both my wife and I suffered from continual drive to and from to London – one hour each way. We just never took the time for loving. It was especially hard on me because I had professed my desire to be more loving every month. February was too, too busy.
My first appointment was for an ultra sound. This was ordered by my oncologist, along with a CT scan which hasn’t been done as of yet. He had found a concerning lump near the site where my previous melanoma was taken out in December. Next were chest X-ray and pulmonary function tests to check out how my lungs were doing. This was interesting because they asked me to suck in and blow out more than I thought I could do. No results yet since my appointment with the respiratory specialist is not until March 2 when the results will be discussed. I then went for two IVIG infusions in St. Joseph’s hospital plus a consult with my rheumatologist. I do two, three-hour infusions each month. These infusions suppress my overactive immune system from attacking my muscles, one of the systems of dermatomysitis (DM), my autoimmune disease (The reason I am unable to swallow and require a GI feeding tube).
My rheumatologist who was accompanied by a student – a doctor – in his last six months until he became a rheumatologist. This is a teaching hospital and I am always interested in talking to the students. My rheumatologist is the head of my medical team and gave me a good going over. She said that, I am doing quite well with my recovery of a difficult disease – dermatomysitis. Nice to have a positive evaluation. We are happy that February is now behind us. March will be better
Still in February, we were then off to the plastic surgeon after the IVIG treatment. Alas, the lump showed another cancer. He drained the built up of fluid from my December surgery and proceeded to remove the new lump about two-inch away from the previously removed melanoma. This was not good. He removed it in his office since it was not too large – about 1-1/2 inches in diameter – half the size of the previous melanoma. He showed it to me and it was ugly. I asked “was it another melanoma?” He answered, “Could be.” It meant that it had grown from scratch in about two months. The next step is to send this ugly melanoma to the lab and then meet with the oncologist and melanoma specialist. The labs are very busy these days and slow. My next appointment is scheduled for March 18. It was especially hard on me because I had not expected more cancer. This, if cancer, would be my fourth cancer in the last eight years.
Now in March, we are happy to visit our plastic surgeon just to check the last surgery and drain some of the liquid from the wound. Next will be a visit with our speech pathologist for a swallow test. I have been swallowing smooth puddings, applesauce, soups, etc. for the last few weeks. My swallowing has been improving and swallow test will confirm this and I hope to be able to eat some solid foods in March. The last appointment in March will be to our oncologist to find out my treatment for cancer – radiation or drugs or whatever. I also hope to have a full body CT scan to ensure that there is no more cancer. Almost forgot, March 16 and 17 another three-hour IVIG infusion each day.
I am going through a lot. A dementia, an autoimmune disease and cancer. It is hard to keep a positive attitude and I do work at it. Part of that “working at it” is self-care. I want to keep on top of all of my ills and to keep in touch with all members of my health team. Actually, I feel pretty good! “Knowledge is power” – this helps me to retain power in my health care. Now I need to get back to my brain health (dementia) issues.
I was first diagnosed with a disease without a cure 2013 – abnormal perfusion of the right basil ganglia and the right temporal lobe. No one has ever explained to me exactly what this is but in 2021 found out that I had mild cognitive impairment (MCI) due to Alzheimer’s Disease. Actually, there is no disease called dementia. It is just covers a number of brain health disorders that are lumped together under the heading of dementia. My self-care activities include understanding all brain health. I am convinced that there are only three brain health stages:
– Preclinical – the brain is healthy. Crossing the line out of Stage 1 to Stage 2 is serious and non-reversible.
– MCI where the brain has some unhealthy issues i.e. senior moments.
– The third stage is all the disorders under the heading of dementia. The worst of the dementias is Alzheimer’s disease named after the doctor of that name Adolf Alzheimer.
I have been researching the brain health issues for the past eight years. My ‘7 Pillars for a Good Life’ have kept my brain healthy and in control until I was diagnosed with DM. This disease took away my ability to exercise regularly, which has caused me difficulty with focus and short term memory recall. More on brain health issues in future columns. It is a difficult issue but very important because the brain runs the body and the body feeds the brain.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease to AD. He shares his experiences in his column entitled “My Voyage with Dementia.” Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
