If anyone is still subscribed, I am going to make another attempt at blogging.
To catch things up since 2020 (I think), all regularly scheduled bi-monthly MRIs have been clear and stable meaning there is no sign of tumor recurrence. I have been surviving with GBM for 4 1/2 years. I remain positive, active, control my diet, sleep and to the extent possible stress. I share the story of my journey at every opportunity. I continue to wear a medical device that slows down, and in some cases stops and kills cancer cells during, division. With GBM, remisson, no evidence of disease, and cure are not in our lexicon. Instead we talk about PFS (Progression Free Survival) and OS (Overall Survival). I am increasing both. If I had another cancer, I might be considered in to be in the no evidence of disease class, but because the tendrils of cancer cells that GBM grows into healthy brain tissue cannot be completely removed through today’s surgery techniques, radiation delivery, and chemotherapy, there is still known evidence of the disease.
In April of 2021, for a variety of reasons, I added a journey with sobriety, the undeniable reason being that my drinking had increased to a level that finally reflected an alcoholic who was not controlling what I could to be ready for any new treatment protocol should one be necessary. I just reached 18 month sober and my motivation and clarity is greatly improved. I no longer wake up making excuses to skip things like working out. I no longer lie to my doctor about my drinking habits. I assume he was doubling or tripling what I said anyway given the occasional sub-par levels of my liver enzymes and elevated triglycerides.
I remain retired and have no plans to return to work. While I am blessed to have no anxiety about my condition or my mortality, there is the real possibility that any MRI could send me down the path to new treatments and recovery time. Returning to a job with a similar level of responsibility I had in the 10 years prior to my diagnosis (leading teams designing, building, optimizing, and maintaining the Verizon Wireless network) is problematic for a variety of reasons:
-Stress creates a sort of chaos in the body and cancer thrives in chaotic micro environments. I read a paper stating there is likely a correlation between stress levels and the return of cancer. With my variety already being a highly recurrent nature, the stress would stress me out.
-While I believe most of my cognitive ability is in tact, there are times when: I need extra time to recall words; forget what I was saying in mid-sentence; and struggle with my short term memory. (Oddly enough, my long term memory may be a little better than expected, for example, I can draw the floor plan of every hours I have lived in in my life.
-I can become uncoordinated on my left side
-I lose focus after a few hours and, depending on the subject, focusing for even a couple exhausts me to the point of fighting off the urge to take a nap. This blog entry is taking me about twice as long to write as it would have pre-diagnosis.
-Loud environments and group settings with multiple people speaking, sometimes over each other, or the need to keep track of multiple threads, make me anxious and exhaust me.
To conclude this novel of a post, my new job is to be of service to cancer patients and caregivers, to coach and counsel as the opportunities arise, and to share my experience with others who have started on their own path to sobriety.
Stay tuned for my upcoming posts:
-Finding true purpose and passion.
-Navigating disability benefits.
-The mind, body, soul connection.
-One model for approaching and appreciating adversity.
-The introduction to my memoir, Note Why Me, Why Not Me? One man’s journey with adversity, currently incurable cancer, and addiction. I am slowly but steadily making progress and will share new material periodically here.
All my best to you and all those you hold dear! Take good care!
