Fortunately, with the appropriate treatment, here I am, living life to the fullest 11 years after being diagnosed with a cancer that my Doctors thought would be the cause of my death in three to four years.
There were those fleeting moments of wondering, is this payback for having a good life? Despite imperfect behaviour and decisions from time to time? Retribution from whoever or whatever has the power? And that power comes from God!
My Oncologist. Dr. Jose Lutzky from the Mt Sanai. Cancer Centre, then put me on a high dose chemotherapy called “Revlimid” @ a cost then, of $8634.00 for a 21 days’ supply that I stayed on for 3 years, it is very exorbitant. One “1” “Revlimid” pill alone is more than $500.00. And they are not easy to acquire, only seven Pharmacies throughout the United States, ship the powerful drug, and to become a customer requires a detailed background check and Hospital authorization. Today the cost is $15.800 for a 21 day supply at a daily cost of $752.38.
Developed from Thalidomide, the drug banned in the sixties when it was found to cause birth defects in women being treated for morning sickness. For someone who had been taking only a regular aspirin, daily Vitamins, and Enalapril for blood pressure, within a few weeks I was taking seventeen pills a day. Drug therapy for M/M is advancing rapidly M/M is a complex cancer, as all are, but this one has a daunting entry in any medical reference book.
Myeloma as a description has its origin with the Greek medical genius “Hippocrates” who did the earliest known work on cancer, which he called Karkinoma “carciunoma” in ancient Greek. My doctors tell me “yes” said I’m going to beat this-and I know it’s true. But that’s the current estimate for your condition, there’s been great progress in treating this. And we’ve learned 50% more than we knew before. People are living with this well beyond the estimates. 3-4 years.
Multiple myeloma, may be a small-population cancer representing only 1% of the cancers recorded and affecting twenty thousand people a year, but Angela, my wife and I keep encountering others who have the disease or who are related to myeloma patients.
Being told that you have cancer; cancer has its own calendar and insidious rhythm, the very word cancer-has no redeeming qualities, when given the diagnosis it felt like a death sentence was passed on you. It is a dangerous and mysterious condition, it is not a “mind over matter” disease, nor is it a disease that has succumbed to the declaration of war against it. “The truth, uncomfortable and inconvenient as it may be, is that medical science has never faced a more inscrutable, more mutable, or more ruthless adversary. It is a unique disease, cancer is, in a way, the body’s war on itself” On leaving Mt Sinai, back to Ft Lauderdale Airport after getting my results after an exploration of tests over a 6-month period, was the darkest moments of my life, my thoughts were on dying, I called my wife and children with the news, I kept checking my emotions, I was approaching 151st Street on I-95 around Miami Gardens area. I then pulled over to the embankment to collect my thoughts. Washed away in tears.
Asking the question? “Why me God?”, when this silent voice answered?” “If not you, why not you?” From that moment, I came to grips with my condition. Once you get over the fear, you must face the facts of your life and deal with them. In my case, what I was facing wasn’t pretty. I’ve always been a fighter, and with all the prayers and support, a winner and told God, right then and there, whatever is your will, let your will be done. God only gives us what we can handle and that it helps to have a good sense of humour when we run smack into the absurdity of life. And to this day, that’s where I left it, it was no longer my problem; I put it in God hands and left it there.
These are the dilemmas for cancer patients, who and what to believe? A particular treatment is not fool proof, or, as many medical experts reminds us, it is not math, with a fixed and certain outcome. I quickly learned multiple myeloma would dictate the terms of my life, from physical fitness, to summer schedules, to appetite, to energy, to appreciation of my surrounding. Patients with complicated conditions would do well to adapt the “trust, but verify” reminder.
I hoped that as time passes I would be able to raise the cancer shade and allow more light into my daily life, until then it is cancer every waking moment and the realization that it will be with me until the end, by whatever means , and a reminder of the mortality zone I now occupy. We had the glory years, and then were ambushed by the cancer years.
This cancer ordeal has reminded me of the mental and physical dividends of good health, every morning I awake longing for the days not so long ago, when I would go for my 5 mile run. I am seldom at a loss for words, but no comments in passing would be worthy. Cancer is such a vicious disease that it can rob us of even small moments of humanity, for my part, with the exceptional support of my family, medical team and friends. I am very optimistic about the future and look forward to continuing my life. Day after day, friends are asking. “How you’re doing” by the way, “you look great” Really? I look better with cancer than I did without?
When I read that someone has been diagnosed with cancer or died of it. I will know there was nothing routine about his or her experience. The charts showing the improved survival rates for various forms of cancer are instructive, if not always comforting, until the day your physician declares you’re healed, and then it is not money-back guaranteed.
The stem cell journey started with 9 of us, unfortunately 6 have since departed, due to, or from their advanced stage, their immune system being knocked out, old age, lack of good physical conditioning on whit-standing the rigorous tremor of chemotherapy!!!
My cancer is manageable, after having 2 stem cell procedures the first on April 21st of 2009, with the transplant on June 11th 2009, with a scheduled discharged date for July 10th 2009 at the Regional Memorial Hospital Cancer Institute in Pembroke Pines, where I remained for 3 months, in a leased Apartment for both procedures, proximity had to be not more than 30 minutes from the Hospital, in case any problems arises, After completing my first pre-transplant work up on 2nd September 2009 the results showed a 37.5% of the cancer were still in the bone marrow, the Doctor and his t I went for my first check in mid-September, where 37.5 % of the cancer were still in the bone marrow, the Doctor and his team were not pleased with that, so I had to do a second scheduled autologous transplant process for the 15th September 2009, under the capable and professional care of Dr. Lyle Feinstein and his proficient team, followed by a high dose chemotherapy their goal was 20% or less. Where I remained for 9 weeks, however, many stories I hear of patients resuming normal lives while keeping multiple myeloma in remission. The numbers, not the anecdotes, tell the hard truths, it’s estimated that 24, 050. M/M cases were diagnosed in 2014, and in the same year 11,090, died of the cancer. The much more encouraging news is that the 3-4 year-survival rate has been improving steadily, from just over 26% of M/M patients in 1975, to approaching 65% now.
As the eternal optimist, I have beaten the odds & with Gods help, intend to hang around for longer than the 3-4 years, having been diagnosed from 2006. Has cancer changed me? Am I a better person? I leave that for others to judge! All I know that having a supportive family, access to excellent medical care, and the resources to pay for it. I remain a fortunate guy.
It is this uncompromising reality that should motivate every cancer patient, and patients afflicted with any kind of complicated condition, to constantly ask “Is this the right approach? Am I making the progress expected?” most important, are all the parts of my treatment team working together?
“Aging sucks” and it doesn’t come alone? It’s accompanied by all its alphabetical friends. Born in 1946, I am not a boomer, but the tailwinds of that generation swept through my age group as well, and we became part of the “always young” cohort. Aging was not in the game plan. I have learned that when friends and relatives have cancer you can be sympathetic, but you cannot be truly empathetic until you have it yourself. Cancer is an unwelcome companion to the so-called golden years of life.
“George Thompson, “a former reporter at the New York Times, wrote a widely praised book called the “Cancer Chronicles” and followed it in the “Sunday Times” with an article “Why everyone seems to have cancer?” He reminds us that age becomes the catalyst for cancer. “As people age their cells amass more potentially cancerous mutations, given a long life, cancer will eventually kill you-unless you die of something else”
Your concentration on the disease is the weapon that will do more harm than good, if you dwell on your condition, and not accept it for what it is, will do more damage than the cancer itself, these are the trials that test a family, and define the character of the individual members, my profound trust and faith in God. The support of my wife Angela, of “42” years. Now. I am endlessly intrigued by their distinctive strengths and instincts, my children in the weeks, months, and years ahead I would need the combined strength, they represented as each played a distinctive role.
Prayers of my family and friends, and good wishes sustained me. Personally. I never drifted from my prayer life, but I was deeply touched by friends, who kept the faith in a quiet way and offered their prayers as well, gave me hope and played a major role in my recovery, in facing this new challenge during this difficult period of my life. I ask humbly for your continued prayers and love.
Currently, my life is troubled free, of which I have earned that right to just relax, do as I please in moderation. I go out occasionally for a social outing to enjoy a few libations, just to get out, from what can easily become a dull life. I look forward and treasure the times I am able to spend with my children and grandchildren, and to still be around to see my third generation, 3 beautiful great grands. Life goes on.
I have always, and still enjoy the quality of the finer things of life, in its abundance. That I’ve become accustomed to, and all that life have to offer in all its fullness, and I intend with God’s help to enjoy every day, as though it’s my last. I subscribe to the Lord’s Prayer “Give us this day”
Nowadays, with God’s grace and mercy, after going through and experiencing 2 stem cell procedures. And the extraction of 10 million cells, over a 6 days period, that completely wiped out my immune system throughout the process, and is still compromised. I can appreciate stem cell, which is a very, very demanding serious and expensive procedure. To my dismay when the attendant from the blood bank came to collect my cells for harvesting, and returning it, she was accompanied by a Police officer on every occasion. Every so often the treatment for cancer can cause other serious problems, my test results over the last 8 years were negative, the latest being the 6th of March 2017 with no trace of the cancer. I can positively say that God is good. To him I give the glory. I am feeling and doing extremely well.
However, being on daily medication. Thalidomide, at a monthly cost of $585.00. I keep active by going to the gym 4 times a week, my lifestyle have been altered somewhat, but God have been good to me over these last 70 years, for which I am grateful. I have enjoyed a good life, with no regrets or complaints. I have done everything that my heart desires: traveling, cruising extensively, and continue to do so at every opportunity, knowing this too shall pass. So far the early reassurance about my condition is holding up. I will die someday, but it is not likely to be from the result of multiple myeloma.
I do think about my mortality in ways I did not before being diagnosed with M/M. It no longer seems a faint, distant reality, in part because I’ve experienced the ruthless nature of cancer, simultaneously at age “70” I’ve moved into the neighbourhood of life where there are a few longer leases. It is not enough to “rage” rage against the dying light?” it is also time to quietly savour every waking moment with emotional and intellectual pursuits worthy of the precious time we have.
Life, what’s Left?
Bring it on!
Kelly D. Burrows
Freeport. Grand Bahama
- Box. F 42977
Telephone 373 7126