My life journey was diverted 25 months ago when my cancer journey began. That’s when thoughts started percolating in my head, and I only just barely came to terms with what a “cancer journey” really was.
No one knows what has been going on in my head. Dealing with cancer has affected my physical and emotional state. I’ve had to deal with “lows” and “highs” over the last two years. Thoughts of cancer are constantly on my mind. The diagnosis of incurable bone marrow cancer stopped me dead in my tracks.
I was given the dire prognosis of three to six months to live. My oncologist thought I might be dead by the end of 2018. When I was diagnosed, I was forced to consider my mortality for the first time in my life. My mind was abuzz with all kinds of stuff.
Deep thoughts turned into intense fears. All within a few days. I had to make some quick decisions:
- How to proceed with treatment
- What should I say to loved ones
- How to continue with my life
And then there were financial questions. I was overwhelmed, but I had to stay in control. Fortunately, I never entered a state of denial or blame. But my mind has been playing games with me from the start of my journey until today.
The cancer journey so far has been filled with ups and downs. I’ve done extremely well. First, I rejected chemotherapy because my type of multiple myeloma could not be cured by conventional medicine.
And my oncologist agreed that chemo most likely would decrease the quality of my life. Personally, quality of life was (and still is) more important than longevity.
Rejecting chemo didn’t mean I had a death wish. On the contrary, I had a healing wish. I immediately began to research my options to heal my body by improving my immune system as best as I could. Destroying my immune system with corrosive chemicals did not make sense to me.
My wife and kids agreed with me but many of my friends and some of my relatives felt I made the wrong decision. I knew that I was engaging in a self-declared experiment where I was trailblazing a new path. Although I was stoked to take control of my body, I felt abandoned by many while pursuing this path alone.
When I had several setbacks, I kept thoughts of these failures inside my head. They fed my moments of depression. My severe setbacks were results of my weakened skeleton. Because I had severe demineralization in my skeleton from multiple myeloma, I experienced many pathological fractures.
I had to go to the emergency room far too many times. The constant fear of breaking another bone often affected my sleep. At times, I woke in the middle of the night with panic and sweat.
In late August 2019, my most severe setback occurred. While in my bathroom, I twisted my body, instantly snapping my right femur in half. Crashing to the floor, I also broke several ribs and split my right humerus in two.
I lay on my bathroom floor in excruciating pain. I couldn’t move. Screaming for my wife, I felt the end was near. I was prepared to die. I wanted to die. After being transported to the emergency room, my femur was repaired to prevent my femoral artery from bleeding out. Totally dejected, I rejected further treatment and was transferred to a hospice hospital to die.
My memories of crushing the right side of my body are vivid, and I relive them frequently. While in my hospice bed, I was heavily drugged, catheterized, and demoralized. But then something miraculous happened.
After a couple of few weeks in hospice, I began to rally. My success allowed me to revoke hospice and return to my Unconventional Cancer Protocols. In October 2019, I saw my oncologist in his office. He was visibly surprised that I was still alive. My mind was clear and motivated. I was ready to live again!
In May 2020, my oncologist wanted to see how my cancer cells were progressing and ordered a new PET Scan. On May 8, 2020, my new PET Scan did not show any active cancer cells in my entire body!
I was euphoric knowing I’d progressed to that point from the edge of death. All this without infusing my body with chemotherapy drugs. Everyone was surprised, but the reality is the cancer wasn’t in remission.
I haven’t cured this malignancy. I’m not in remission today. I’m an experiment in progress with a vision of future healing. Today, I feel amazing. But all along, lingering in the back of my mind, I continued to have infrequent fears associated with bad dreams. No one knew if I would or if I could survive.
I was counting my remaining time on Earth in months — not years. And I’m still counting my life expectancy in months, even though I have come a long way in healing my body.
I have limitations today that are the direct result of my cancer journey. Because of my many pathological fractures, I know my bones are fragile. I have to be careful not to fall or trip or twist abruptly.
After breaking my femur in August 2019, I developed complications. Following the repair of my right femur, I lost 1.5 inches in the length of that leg. To compensate and to be able to walk comfortably, I had to customize all my right shoes to include a 1.5-inch lift.
In addition, my past vertebral compression fractures left me with continuous back pain. Also, my previous leg fractures continue to cause leg discomfort. And my right humerus fracture has compromised the movement in my right arm.
These physical limitations have reduced my ability to function as I had before my diagnosis. Unfortunately, I think about my impairments from time to time.
I am only human. Moments of depression are a reality since my diagnosis. Although I don’t engage in these thoughts frequently, they happen.
When they occur, I can fall deeply into the “victim” status. I know I have come a long way and that I am a survivor. But sometimes, thoughts of my mortality and a feeling of loneliness turn into fears of weakness and the unknown.
I believe I’m here for a reason. My beliefs along with the strength of my wife help me climb out of the depths of depression. In 2020, Dr. Christopher Kerr published his book, Death Is But a Dream: Finding Hope and Meaning at Life’s End. Dr. Kerr is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo.
In his book, Dr. Kerr interviewed over 1,400 patients who were in hospice. All of his patients have two things in common: They are dying, and they know it. These extraordinary people described their dreams to be “more real than real.”
When I was in hospice during August through September 2019, I remember some dreams were about dying. These dreams were not all the same. I had good dreams some nights, and then I would have extremely disturbing ones on other nights.
My good dreams were vivid, colorful, and reassuring. They were not scary, horrifying, or upsetting. Many of my dreams at that time were about my spirit moving out of my body. They felt real. They gave me peace.
On other nights at the hospital, my dreams were dark and unsettling. After rallying and revoking hospice, my dreams changed. They still were numerous, but more adventure-driven and less spiritual-driven.
However, during my moments of depression, my dreams were filled with hopelessness and fear.
Since I’m not as mobile as I was before my diagnosis, I get antsy if I’m not doing things I perceive as productive. I make every effort to stay busy by walking outside daily, exercising in my home a few days a week, and staying mentally active.
My weeks are peppered with virtual Zoom consultations, constant writing and reading, and independent research to learn and connect-the-dots of medical science. If I’m not staying busy, I feel hollow and weak.
One of my biggest fears that floats in and out of my head is the way I will die. I fear dying in a hospital bed with no other loved ones by my side. I fear dying from not being able to breathe or struggling to breathe. Death does not scare me. But being alone, suffocating, and then dying panics me.
I’m in a great place today, and I have so much to be thankful for. I’m grateful for my family, supportive friends, and well-wishers from all over the world. This cancer journey has given me strength and purpose.
My energy level is high; my wife is by my side, and I stay busy with productive projects. My oncologist sees me as an amazing personal result. And my story is going to be written up as a case report for a major medical journal.
All this good stuff is going on around me and inside of me. In my head, I know that my cancer journey has given me an opportunity to share my experiences and help motivate those looking for difficult answers.
I have frailties and vulnerabilities. But I have a desire to move my body forward to heal.
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