Marking Off My Cancer Milestones

Article

Mixed in the boxes of appointments and cancer treatments are milestones that uplift my spirits and are unique to my healing journey.

cartoon drawing of blogger and myeloma survivor, Ronald Chin

Most people live life in a linear way, but when you have cancer you live your life in boxes, laid out in weeks that become months, then years. In each box, MRIs, radiation sessions, infusions, doctor appointments and the never-ending to-do lists that are meant to keep cancer in check.

My first calendar of life-changing importance begins in January 2017, a month of pure shock. It starts on large 12- by 12-inch paper with pictures of Tropical Islands. The days are large enough to write my consultations, hospital stays, visits from family and friends, nurses, home health aides, infusion cycles, etc.

I will always be grateful for Atlanta Mama (my mother-in-law) who recommended I get a large calendar to write down all my meetings. I am so happy to have followed her suggestions; I now can see my progress over the last six years.

I can also see the confusion of my first month. I recall the parade of specialists, the bone marrow biopsy, the onslaught of tests, the initial diagnosis and decisions of what to do. It was excruciating to get into taxis, going over Manhattan potholes to the hospital for out-patient radiation and infusion appointments.

Who would have thought that I would be in a situation where I was incapacitated? I couldn’t go to the bathroom without assistance, take my own shower or get my own food. I needed a nurse or my wife to give me shots, a multitude of pills, take my temperature and change the bandages on my back wound. I was frustrated and disconsolate.

I had to ring a bell to call for someone to wash and wipe my butt after each poo. I had to use a commode next to my bed which had to be cleaned after each use. With each excrement my dignity got a flush too.

But mixed in the boxes that unfold as cancer does are milestones that uplift my spirits and are unique to my healing journey.

Recorded between first chemo treatments is also the first time I took a shower by myself – on Oct. 18, 2018 – over a year and a half of my behind being wiped by my wife and strangers.

I remember vividly when the superintendent came to our apartment and installed stainless steel grab bars on the white tile wall of my shower/bathtub. After he left, I slowly peeled off my clothes and stepped over the cast iron tub surround. I felt like I was floating on a cloud lifting me over a mountain. As soon as I had landed on the other side, my feet grounded on the blue bath mat — it was like the tentacles of a flattened starfish hanging on for dear life at the base of the smooth porcelain-enameled tub.

I turned on the faucet and felt the water gush from the spout. I made sure the temperature was just right for me: hot and steamy. Then I turned the setting for the hand-held shower. Oh my gosh! I immediately pointed the snake-like hose with the shower head toward my body and then over my head. I started sobbing! I finally felt free from the eyes of home health aides. I was now in my private world under a waterfall of warmth and freshness.

Ahhhh….

And here’s another joyful box— October 2019 — over two and a half years since my life-changing diagnosis I took my first plane trip from JFK Airport to Raleigh-Durham, North Carolina to visit friends. It felt thrilling, yet daunting, to make this trip, I finally felt strong enough to navigate all the different portals with my physical restrictions. Though I required a wheelchair to go through the airport, I felt like a VIP bypassing all the lines to go directly to the gate.

We arrived at the home of my wife’s long-time school friend, Adria, and the view of the lake was magnificent. Calm blue waters mirrored the skies and the clouds with green trees lining the shores on the other side. We made handcrafted projects, delicious meals and drinks on the porch. I settled into a calm trance, watching moths circle aimlessly around the fire pit.

But that same week, a fellow multiple myeloma is now flying with the angels. As soon as I learned of the news, I sat outside on the sunlit deck to be by myself. A red cardinal flew next to me to munch on the bird feeder hanging a couple feet away – a sign that those we lose will live forever, so long as we keep their memory alive in our hearts. A milestone which I will never forget.

As I move on through more boxes, it’s my absolute joy to watch them unfold, both the good and the bad.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.

Related Videos
Dr. Mikhael in an interview with CURE
Dr. Ajai Chari in an in interview with CURE
An image of Dr. Patel in an interview with CURE discussing healthy lifestyles in myeloma
Dr. Munshi in an interview with CURE
Dr. Dikran Kazandjian during an interview with CURE
Looking Ahead Panel