Life Changes

How has cancer affected my daily life? That’s a big question.

I’d moved to Sedona from Scottsdale (100 miles away) only a few weeks before I was hospitalized for the first time. Having sustained vertebral, rib, and sternum fractures, I couldn’t move, and had no friends around to look in on me. I was effectively paralyzed.

Fortunately, a dear friend from Scottsdale came to visit once a week for about six months. She drove 300 miles to take me to treatment, and stayed for a couple of days to care for me. Eventually I was able to open the car door on my own and tackle the 9 hour round trip myself. The trip meant losing a day per week, and the companionship. The impact cancer has on the routine and mental health of caregivers and loved ones is easily overlooked. This woman gave up her life for me.

I had an active lifestyle before hospitalization and was in good shape, but after months of lying in bed in pain and with little appetite, I’d lost all my muscle mass and was down to 100 lbs. I couldn’t raise a glass of water to my mouth for weeks, and would often have to urinate in the bed if I couldn’t reach the bedpan in time. All of the basic motor skills that are second nature to us all, had become Herculean tasks, overnight.

My ribs would occasionally fracture, and even breathing was hard. I’d moved from 1,000ft elevation to 4,400ft, and suffered from pneumonia twice. One night I suddenly awoke drowning in the fluid in my lungs. That was a very scary moment and I didn’t think I’d make it. I had to learn how to live by taking half breaths for a long time, and work out how best brace myself for a sneeze or a cough until my ribs and spine had fully healed.

Learning how to walk, use my hands, wash my hair, breathe, etc, are things we take for granted. When all of these skills disappear at once, and the pain in re-learning them unbearable, the impact on your daily life is enormous, both mentally and physically.

After my friend returned to her own life, I found a nurse to visit me five days a week. She’d cook, launder the sheets, hose me down in the shower, and give me my medications. It was a very humiliating experience. I was also paying out-of-pocket, and eventually had to cut it back to three days a week as the money started to run low. The days she didn’t visit were hell. I’d lie in bed with nobody to talk to, and nothing to look at other than a fence outside the patio door, and an array of medications.

At my first Physical Therapy appointment, the practitioner told me I may not be able to lift my arms again, and the following day the Covid lockdowns began, leaving me to work out rehab on my own. I referred to YouTube videos for patients with spinal injuries, and followed an exercise regimen prescribed by the physical therapist. I had to learn how to get out of bed on my own, walk and use my arms without moving my spine.

The weekly drive down to Scottsdale for chemo was exhausting. Every bump in the road vibrated through my spine, and I’d often need to pull over due to hand and leg cramps that made it Impossible to drive. Tiger Balm and Gatorade were always on hand, but it could take half an hour for the cramps to settle. I made good use of the journey, though. On the way home I’d pull off the Interstate, drive a couple of miles off road, explore a little and take in a short meditation. I’d shake off a full day of sitting down and completely clear my head of any stress brought on by the drive. After about a year of this, I managed to get treatment moved closer to home, which gave me a new lease on life. Even though the new infusion center was only 20 minutes away, I would still stop on my way home for a hike and to decompress.

Coming down with Multiple Myeloma was the beginning of over four years of isolation. Isolation has been as punishing emotionally as the cancer has been physically. There’s been no social life, intimacy or much laughter all this time, and there’s always a feeling of being alone and lonely.

Shortly after I was diagnosed with MGUS, I’d found purpose. This is something most wish for but it eludes many. My purpose made me fight back when I saw the lights in hospital one day, and has kept me focussed and busy this whole time. Purpose gives me the drive to tackle any challenge that comes my way. Courage doesn’t play a role at all.

Part of my purpose is to influence others to connect with nature for it’s proven healing properties. My photography is a vehicle to promote those benefits, and I’m living proof of how getting out on the land has been a significant aid in my physical recovery, and mental health management.