Patrick Bean shares his story of cancer care with PALS.
RESCUED FROM THE DEAD: HOW PALS SAVED MY LIFE
“A true pal is someone who stands by you through thick and thin, offering unconditional love, support, and acceptance. It goes beyond just a simple friendship and involves mutual affection and support.”
I owe much of the last eight years of my life today to the soldiers at the Patients Assistance League and Service (PALS), who offered patient encouragement and care when hope had been lost. Mine is a miracle not merely of science, but of agape love.
I desire that others afflicted with cancer find hope more certain than wishful thinking in their battles to overcome this insidiously uncompromising disease.
*****
It was a warm Friday in May 2016, less than two months after the instance of my 50th birthday when I was diagnosed with acute myeloid leukaemia, a fast-growing cancer of the blood and bone marrow which had taken control of my body sapping most of my strength, stiffening each joint, fatiguing physically and mentally, eliminating the ability — and much of my will — to recover from the slightest moment of exertion.
I was a dead man and I knew it even before the diagnosis was returned. Finally, careless, carefree living based on poor choices and dangerous habits had borne fruit … ugly, sour, rotten to the core.
I’d well noticed increasing occasions of debilitating physical fatigue over two years. I’d had bloodwork performed on three occasions yet nothing had been identified by local, medical professionals despite what should have been obvious abnormalities in my blood cell counts.
Then came the fateful Friday of reckoning. I woke feeling fatigued, but this time there was something else happening. Red spots were all over my body, so I walked down the hill to Somerset Village to see Dr George Shaw, who suggested I visit the KEMH blood lab and this I did.
Fluid having been drawn I ventured home only to find my mother waiting outside the house with an urgent message, “Dr Shaw says there are serious abnormalities in your blood samples. You need to go to emergency right away.”
Yet, even as these words registered, careless whispers of a good time to be had before any return to the hospital held sway.
Eventually, good sense prevailed and east I returned to the place I’d not long left … it would be just shy of 18 months before I lived anywhere other than a medical facility, either home or abroad.
Following a painful bone marrow biopsy, where a needle the size of a small drill bit was driven into the bone in my lower back, the diagnosis was further confirmed … the end was nigh, the Grim Reaper had arrived.
I was told by my oncologist Dr Sein Aung that my disease was incurable locally and, even beyond the shorelines, chances of survival were one-in-five. Translated this meant that out of 6 possible outcomes five of those would result in my death, while only one kind of outcome could see me live, life as I once knew it was over.
Still, there was another hurdle. My being on the stop list and without a visa to travel to a leading medical institution in the United States could spell doom.
When it rains it pours and my life was amid a torrent, an unyielding flood and drowning in circumstances of my own making. This was the end.
God though had other plans for this disobedient iniquity worker, as angel arrived in the form of my social worker Colleen English — the same Colleen English now occupying a lead role as CEO of PALS. Where brethren I knew had died due to an inability to travel west across the Atlantic Colleen performed magic in convincing the US Consulate to grant me a humanitarian visa on compassionate grounds.
My prospects of at least being able to visit my American son and his four children had improved significantly with a few keyboard clicks and a rubber-stamped computer printout affixed to my passport.
In my mind, I was still going to die, but at least I’d be in the company of my bie and the grandchildren, along with my mother and father, both of whom would travel with me.
Lahey Medical Centre in Burlington, Massachusetts was the first stop and there Patrick Jr came to visit. I was initially accepted as an outpatient, so we had time to spend quality time at a nearby Sonesta Hotel.
PALS stepped in to fully fund my hotel stay at Sonesta and further footed the bill for my mother and father to attend once they arrived there.
Several Bermudians housed at the hotel received similar benefits, which offered comforting familiarity.
Pain shared is pain lessened and many of us would spend time eating, playing cards and conversing in the lobby, sharing daily experiences.
To my son, I spoke of impending doom. He angrily remonstrated saying there was, “no way his hero was about to surrender without a fight”.
My negativity persisted and my seed was angry with his father when he left town. Back in the hospital getting intensive chemotherapy that resulted in a mild heart attack and 20 percent less blood pumping function neither did my son call nor answer my calls for the rest of my time at Lahey.
At the time Lahey, which has the appearance of the old wing of KEMH but whose staff are remarkably attentive, did not perform stem cell — bone marrow — transplants.
I needed to be accepted at an institution that could perform the procedure. Just as importantly I needed a donor, fast.
Fortune again soon shined, as Massachusetts General Hospital — renamed Mass General Brigham — approved me as a patient and had me come for advance testing and placement on the matching donor list.
My son would have been, at minimum a 50 per cent match, however, a 100 per cent match was found in the form of an anonymous German soldier, to whom I can only cast thanks via the cosmos.
Moving from Burlington to Boston Mom, Dad and I entered an area with a name we knew well, Beacon Hill, spelled and pronounced the same as the road we live on in Somerset.
While my parents spent a great deal of time in a PALS-funded hotel room in said district, my view was from a well-appointed luxury room of the hospital.
On August 3, 2016, the initial procedure went as planned, with the most challenging aspect occurring when I received an injection to stimulate the white blood cells, producing pain that defied description.
Until the whites calmed after about a week even consistent combinations of opioid pain medications dilaudid, fentanyl and morphine mixed with two other non-opioid relievers failed to comfort, while crying and screaming only enhanced the pain.
A voice informed me that the pain was caused by spiritual –demonic — forces and so I called on the spirits of righteousness for comfort. Amazingly this worked and the pain diminished greatly after a few days.
I was soon released to the hotel where my mom now lived alone and was told to have no contact with any other humans for 100 days as my immune system was nonexistent.
Prone to self-sabotage I went grocery shopping and almost immediately picked up a virus, causing graft-versus-host disease to infect my system. My body began openly rejecting the transplant and I was again confined to inpatient status.
As a hermit and serious television sports watcher living exclusively inside with female nurses at beck and call being isolated with a remote and array of sports channels was heaven.
That is except for the fact that the latest round of chemo had completely eliminated the desire for food, leaving me as a 115-pound skeleton.
A half dozen specialists were making daily visits, overbilling and dramatically eating into the combination of insurance coverage and L.C.C.A. Regardless, the treatment was elite, but one must also understand that most US hospitals are for-profit entities, not a subsidised holding facility of limited expertise like KEMH.
Most patients on my floor were never going to see the light of day again other than through the portal of the all-glass siding.
We were the sickest of the sickest, illest of the ill prepared to meet our maker or simply become food for maggots and other creepy crawlies.
A daily diet included a combination of 48 pills and injections. My kidneys were failing under processing requirements of so many substances and my state was not changing.
Once the cash register reached $1 million I was informed that I would be placed on a flight back to Bermuda to continue my ‘recovery’.
This was a lie spoken in kind language. My body was still rejecting the transplant … I was being transported home to die.
As I’d just had surgery to drain a gallon of fluid from my legs my surgeon delayed my departure for three weeks, for which they billed me directly in the amount of $182,000. I suggested to the credit officer that I’d be able to submit $50 per month and I’ve not seen a bill since.
Back in Bermuda I initially went from bad to worse. At one point I was paralysed and had to have my body turned by nurses to prevent bed sores.
Eventually, I recovered limited movement from the waist. I could do nothing with my legs, but I was able to return home after another six months at KEMH, where staff attentiveness was drastically diminished and my manner was salty as a result.
Caregivers came and left, but constant were regular visits by the PALS nurse assigned to my district. She tolerated my abrasiveness, giving positive affirmation that, “we do recover”.
Dr Aung was still there for me as well, along with nephrologist Dr Raphael Loutoby and nurse Practitioner Myrian Balitian-Dill of Patient Centred Medical Home.
The combination of PALS, along with the senior professional of KEMH refused to give up on me.
The anti-rejection drug tacrolimus was the key element of my continued existence but I could not and did not take it forever.
It was a day in October of 2018 during a scheduled visit with Dr Aung that I was asked about my willingness to make a life-or-death move to eliminate my use of tacrolimus and see if my body would continue to function and enter proper remission.
Without thought nor care to inform even my offspring I agreed to the move. I trusted my team’s expertise. I trusted PALS to continue to assist. I trusted my community which had prayed and pleaded on my behalf. And I trusted God to be there if I stumbled.
After two-plus years of clinging to this existence by little more than a fingernail, my body finally began to act as a gracious host rather than a boorish despot.
From having to be pushed in a wheelchair I was able to ambulate via a walker and from there to a cane.
Today I have myriad complications, yet I remain and death continues its mental retreat.
Not as often as I should I’ve attended counselling at PALS, hoping my success might encourage those not in remission and facing uncertain outcomes.
Make no mistake PALS represents a bedrock to recovery. They are unremitting warriors to an unrelenting disease.
“God uses rescued people to rescue people.”
Christine Caine