Before Nov. 2, the only ailment that was persistently bothersome to Dr. Bruce May, 93, was his arthritis. But the pain in his joints didn’t keep him from driving to the gym to work out three days a week doing cardio and strength training.
After getting a hip replacement in the 1980s, he figured out a way to manage the lingering discomfort with applications of pain gel when needed, a daily dose of ibuprofen before bedtime and a morning stretch regimen.
May, who lives in Exeter Township, Berks County, found himself a little more winded going up stairs or walking uphill in the past year. He chalked it up to being in his 90s, so didn’t feel it was in need of any special attention at his regular doctor visits. It was on Nov. 2 when he realized he didn’t have a choice but to get some medical attention.
“I was on the treadmill walking at my normal speed at the gym when I noticed I was having a lot of trouble breathing,” May said. “I realized I had to get to urgent care.”
His wife, Kathy, picked him up because he felt too faint and unsteady on his feet to get behind the wheel of his car. That visit to urgent care led to a trip to Reading Hospital to undergo further testing. Fluid was found in his lungs, so he underwent a thoracentesis for them to remove it. But more testing was needed to make a definitive diagnosis.
Next up was a biopsy. The test caused a shift in focus from his arthritis pain to an internal tenderness and extreme soreness related to the procedure.
“The discomfort was strong initially, so the pain in my hips was something I became less aware of,” he said.
Awaiting the test result brought up feelings of anxiety that were new to May, a retired optometrist who practiced in Berks for 40 years. The results came in.
“I had no sense of where I was headed or where I was going,” he said. “Then the test came back as lung cancer with metastasis, so it’s not limited specifically to the lung.”
Given a prognosis of four months to live without treatment, May has done everything but sit around and accept his fate. While he feels prepared to face dying, he has decided to try prolonging or extending the quality of his life with immunotherapy. He received his first transfusion last month and will go back every three weeks as long as he continues to see value in it.
“Given my age and the stage of the cancer, I wasn’t a candidate for chemotherapy or radiation therapy,” he said.
May was pleasantly surprised by how good he felt following his first immunotherapy treatment. He shared some of the most noteworthy physical improvements he has experienced since his diagnosis just over two months ago.
“The biggest change was appetite,” he said. “Early on I had almost no appetite and had to force food and had no interest in eating. In the first several days after immunotherapy, there was a return of appetite and a willingness to eat. Other elements I found I was having were a lot of bowel issues and that was noticeably improved. The same is true of my ability to advance hydration.”
He created a chart system he titled “Subjective Assessment of Status Areas” to assess himself twice a week. He checks in with himself on 21 different areas ranging from breath, cough and sleep to creativity, reading and writing.
“I’m using it to gauge whether or not the process is of real value to me,” he said, referring to immunotherapy.
On the scorecard, a number one represents low or poor performance, up to a number 10, which represents good or high performance.
“Each day I have done the assessment since my transfusion there is a plus, so I don’t seem to be losing ground,” he said. “Over time I seem to be making a lot of progress.”
May said he feels a sense of security with an oxygen tank on hand at home in case he needs it. He feels he has support to turn to at the McGlinn Cancer Center if pain becomes an issue at any stage of his illness.
“Right now I have minor level aches, but pain is simmering,” he said. “If my pain level came up very high, I think my wife would reach out to the nurse manager of my case quite quickly.”
Given his terminal illness, May decided to take matters into his own hands on how he’d like his life to be celebrated. He would like to be present for the occasion, which is why he is planning a FUNeral to take place this month while he’s still feeling optimal.
Billed as a brunch and roast, family and friends who are invited will be instructed to “pay their disrespects.” His daughters and one grandson are working on the planning of what might be guests’ “last chance to eat with and cast public aspersions on Doc May.”
He’s still in the process of fine tuning the FuneRULES, which consists of a comical list of do’s and don’ts for guests, such as one Do: “Loud and boisterous laughter should be expected the whole time,” and one Don’t: “If you wish to arrange a flyover, do so at your own expense.”
“I’m looking forward to seeing who can do the best roast and who can really hit me with zingers that might make me laugh,” he said. “I’m also looking at how people react to things other people say about me.”
Another thing that May, a grandfather of seven and great-grandfather of eight, was busy planning earlier this month was a presentation he recently made at the Exeter Community Library, where he was a guest speaker for their Death Cafe program.
“I learned about Death Cafe far before my current state,” he said of the program that’s designed for people who are interested in discussing the topics of dying and death openly. “My status changed so dramatically when I moved from an observer to an experiencer.”
During his presentation, he discussed mortality and making the most of life based on his personal experience of living with terminal cancer. His story is one of optimism where he has decided to take death head on with his chin up.
“In keeping with my disdain for more common practices, I have rejected most of the ways life’s ending moments are typically managed,” he said, adding that refers to his desire for his body to be used for medical research upon his death, in addition to his desire to attend his own celebration of life.
He encouraged others to take the reins of death by providing copies of the Five Wishes advance directive form available for participants to take home to fill out.
“I highly encourage it,” he said “It enables people to take death into their own hands and have more control.”
When not planning for his FUNeral, May gets the most enjoyment out of reading and writing on his comfortable recliner located by the window in his bedroom. His writings, which he refers to as his denouement, convey a deeply personal exploration of his experiences with a terminal illness. It is intended to be the last chapter of his memoir that has been in the works for six years.
“It’s basic journaling about what’s happening to me and then sharing that information with friends, confidants and family who find it has value,” he said.
With his second immunotherapy transfusion coming up, he will continue to monitor his response with the help of his assessment scorecard.
“I’ll have to see if it only extends my life, but not the quality of it,” he said. “If that’s the case, I’ll probably elect to move out of it and get on with the dying process.”
For now, given all he has to plan and look forward to that has been keeping him distracted, he is feeling hopeful about whatever his future has in store for him.
“I’m feeling ‘upspirited’ by so many things going on,” he said.
What May hopes to accomplish during his remaining time is to inspire and contribute value to others through his insights on the dying process.
“I’m hoping to help prepare people to deal with the inevitable loss that will eventually take place in their lives or in the lives of those closest to them,” he said. “This would make my life even more worthwhile by far.”