1. We need a “Cancer World” primer for newcomers
November 20, 2024
Most people entering the world of cancer care for themselves, a loved one or a dear colleague do not have a physician for a wife. And they themselves might not be a medical professional.
Most people entering the world of cancer care have no professional clinical training in herbal medicine, psychotherapy, homeopathy, meditation, yogic sciences, as well as the medical therapeutics found in ayurvedic medicine. I probably left out a few resources.
Most people entering the world of cancer care do not have a support community of philosophy, theology, and spirituality in the beginning days of cancer. Fortunately, this is rapidly created by many.
I was a physician assistant for several decades and fortunately had all these trainings, resources, and communities for many years before cancer knocked down my door and turned my life upside down.
Wouldn’t it be wonderful to know…
- How to navigate this new world?
- How to access a sincere loving guide gently saying, “Here is what you need to do: step 1, step 2. Here is how to change your diet, your exercise, etc. Here are the best ways to tell your family and friends about your condition and how to deal with their reactions.”
- How to cope with a family that is as frightened as we are. While our doctors are doing their best, a lot of this is up to us to direct our own care. Telling others how to do it is challenging especially when our own answers and needs are in constant flux.
- How to tell your health care team what you need them to teach you.
Maybe someday this journal could serve as such a primer.
We are doing our best to share with you everything that we discovered and changed our life for the better as we learned to live, heal, and recover from cancer. Along with cancer comes tremendous stress at every level and relationship. We hope these notes can inspire and calm your gentle hearts.
Cancer makes us feel very small, like we have no control, we don’t know what to do. However, there is a fortuosity that we keep bumping into [attracting] that brings helpful people, places, and therapies into our lives. Keep looking for it. It is there. Nothing here is meant to provide medical advice but rather just a sharing of our journey of what helped and what did not help that much. All done from my perspective of a person discovering how to live and recover from stage 4 lung cancer at the age of 68.
2. Who is your buddy?
I want to share with you recent examples that break my heart. I heard new stories of dear ones entering the healthcare system without any skill sets on how to stay centered, hopeful, and confident when being tested and evaluated for potentially difficult and life-threatening new illnesses. Such dire times in everyone’s life should employ the ‘buddy system.’
What is the buddy system?
At camp when I went swimming at a new lake, I teamed up with a buddy to keep each other safe. Someone that I would stay in constant touch with both physically and verbally as I explored literally uncharted waters.
At 11 years old, that was the deal. Nearby there were leaders, coaches, and parents who would further be available to support me/us as we ventured out into those waters.
The stories I have recently heard from other families in the last 10 days were filled with fear and confusion as these folks entered the uncharted waters of the healthcare system and felt ambushed emotionally and intellectually. Their buddy system did obviously not include a medical translator, a psychotherapist, and family members skilled and prepared for such events so that they could diminish and even prevent the very bad day they had.
I wish I knew how to make my website a safe house and a touchstone to prevent such tragedies, be they mild or massive.
Last week, my wife and I spent 12 hours or more overnight in the emergency room and I was sent home wearing new medical equipment with absolutely no training in how to manage and sanitize such equipment. My wife being a physician was certainly great help however neither of us had detailed training in this new medical specialty and thus we were left to intuition and YouTube videos for guidance as we waited the next five days to meet with the new medical specialty team.
I would not wish our situation on anyone. We are managing things fairly well overall, but when Terri pointed out to me the next day how the hospital discharge plan did not include any training and resources for this new equipment, I just can’t imagine what other non-medical families would do.
3. The day I refused to finish my peanut butter and jelly sandwich
November 27, 2024
It should’ve been a warning the other day at chemotherapy when I could not finish my peanut butter and jelly sandwich. Something that never happened in my childhood.
When I got home and began my resting cycle in the living room, I had my next unusual event after chemo. Every week of every chemo something new has been discovered that is usually medically problematic.
Yesterday was no exception.
After a long nap, I got up and went towards the bathroom and just entered the bathroom without pain, and without warning, my entire bladder emptied itself through my clothing and partially into the toilet.
Totally embarrassed and humiliated, I cleaned myself up and became very exhausted.
Had I been thinking properly, I would’ve realized that my total exhaustion from minor activity was always due to the fact that I was in A-Fibrillation. Not having made that connection and then being stressed about my loss of bladder control I forgot to take my evening dose of my heart medication for A-Fib. [big mistake]
Because fever and chills were also present, we decided that it was best for me to go to the emergency room for the other reasons of feeling unwell. While at the emergency room, my heart A-Fib was very high and out of control because I had forgotten to take the medication and because my heart is always worse on the day of chemotherapy. Due to my mistake and forgetfulness we had to spend hours taking medicines to correct my heart rate as a goal of being discharged from the hospital.
At 6 o’clock the next morning, we were discharged from the emergency room after a sleepless night of multiple tests, CAT scans, and many long, heartfelt discussions — we discovered very uncomfortable things.
The first uncomfortable thing is that I was Covid positive. Shocking news for a man and a family who has gone to extensive measures of protection and prevention from exposure to Covid for the past two years. Extreme measures for sure.
Then came the bad news that my loss of bladder control was due to the fact that my bladder was so overly full of urine and being unable to empty itself that it was just the fact that I had relaxed when I was asleep that the gallons of urine finally came out.
They may not have said gallons
By 10 o’clock in the morning on Wednesday, the day after chemo, I had a bag strapped to my leg, and I was overall feeling much better with that system of my body. Previous pain and discomfort diminished with my adjustment to the new equipment on the inside and outside of my body.
In the meanwhile, Terri, who had not slept in over 30 hours had made lots of phone calls to doctors’ offices and pharmacies and made urgent changes for family member schedules. I got in a nap of a few hours and learned how to work with the mechanics attached to my leg.
In regard to Covid and everything else, I had no symptoms of this illness. My new post-ER life plan disrupted plans for a special holiday trip that would have started that night as well as other weekend plans.
We were very shocked and sad about all of these medical and social changes that were happening. Our grieving was real and very deep, but we slowly started to get our act together and gently felt more love than anger and disappointment about life and my health situation. I am definitely learning that grief is a big part of coping with these situations. A very new insight for me!
This week began with a new team of specialists (urology) to join our medical family, and as our life arrived at a new level of normal. The greatest damage has been purely emotional and reactionary to these life changes. Otherwise, I had no physical suffering, except for the urinary system which normalized over time. And of course, the next few days I will ponder what other interesting reactions to chemotherapy I will ride out with the best charm and grace I possibly can.
If only I would’ve remembered that the day I refused to finish my peanut butter and jelly sandwich was a day that treachery was lurking about.
4. Disappearing Memory Syndrome
In family therapy when family members, parents, children, relatives, etc. are arguing or dealing with very tender topics. This is when the “disappearing memory” will commonly arise and then lead to further frustration when one of the two parties says “don’t you remember I told you how I felt about this yesterday?”
The truth is they don’t remember. They actually have no memory of it at all. The buddy system at medical appointments is the prevention and cure of the disappearing memory syndrome.
The disappearing memory explained several things of how during stressful conversations we can’t remember what we’re being told and this is why the buddy system is so important when you go in to see your doctor or therapist about a very difficult topic. Bring a buddy along with you to be a second set of ears to hear what you’re being told because you have great potential to suffer from a disappearing memory during parts or all of that conversation.
With Love and Gratitude.
Terri and Blair
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Fear is selfish.
Courage is selfless.