Dead Man Talking
By Brian N. Walin
Today we explore a world that is most often off limits. A topic that is taboo, or gently whispered in some homes: What it’s like to die. But when you get veteran cancer patients together from around the world and from all walks of life, nothing is out of bounds when it comes to this topic. For seasoned cancer patients, it’s a reality ever-circling overhead like a vulture.
I think we as cancer patients have so much time to think about dying, that often we become desensitized to it. We tend to see life from a different perspective, and begin to appreciate more. Cancer clarifies the honest realities of life and that we all have an end, often sooner rather than later for some cancer patients. The new convertible BMW and the million-dollar home are no longer life’s goal. You simply want to survive.
As you approach what could be your final days, you want to make sure your loved ones are secure. As I was preparing to write this, Bob Pemberton was planning every detail of his own funeral with his wife Joyce and tearfully reviewed insurance policies with their agent. Bob has volunteered to be a participant in an “End of Life” study at The Moffett Cancer Center so others may learn. In the midst of all this, he generously took the time to answer questions from fellow cancer patients wanting to glean something from his experiences.
At a time like this, there are so many questions. Darkness is knocking as you reevaluate your life. Religion often becomes a deeper part of the equation as you view your own mortality at hand. There is so much to do if you have been a procrastinator. Do you have a will, a trust, or a clear understanding of how your loved ones will be provided for? How will the bills left behind be paid? Are all your insurance options covered? There are plenty of options for insurance if you plan ahead, but few if you wait until it’s too late.
Most of this should have been attended to years ago, long before you ever get sick, allowing peace of mind if and when tragedy strikes. But, there are those that refuse to believe they will ever die or simply refuse to discuss it until life spins out of control.
Bob has been married to Joyce for over 32 years. Their union was blessed with beautifully healthy children. The Pembertons are the epitome of the successful American family.
Bob served our country in the Army as a First Sergeant Sapper, an elite combat engineer, at Fort Bragg. He became a successful real estate agent and worked with a computer team in Chicago on the side. He is a well-educated man with the emotional strength of an ox, and with his Army attitude, nothing was going to bring this man down.
His strength is innate, as a close friend once recalled how tough Bob has always been, “When we were in ninth grade, Bob was a star on the basketball team. One day at practice he missed a shot or a rebound, and punched the wall in frustration. Bob broke something in his hand. He was mad at himself -- but the pain never bothered him.”
His wife Joyce works for the American Cancer Society. They are active with church and own a well-appointed home in a quiet suburb equipped with a pool, a yard full of critters, and a loving dog that lounges around the house. They are the American dream personified.
Life was blissful until the day Bob felt his first lump. Dreams do come to an end. Life would never be the same from that day forward. His war with cancer began, and life took on new meaning. Bob found himself on the front lines of a whole new Army and waged a personal war to survive. First Sergeant Pemberton would battle cancer for the rest of his life. All other life goals would take a back seat to the vicious enemy within.
With his fifth recurrence, he was recently sent home to die after a failed operation that would have removed a tumor, as well as the remainder of his tongue, esophagus, and larynx. The plan was to pull his stomach up to the back of the throat, leaving him permanently speechless.
It seems the tumor had attached itself to his esophagus and grown dangerously against his carotid artery with major veins wrapped around. Any attempt to remove it, could be catastrophic. The severity was discovered 90 minutes into surgery. They stapled him back up and delivered the unimaginable news to Joyce. There was nothing more they could do for Bob. If the tumor continues to grow as predicted, it will cut off the blood supply to Bob’s brain and the curtain will fall.
Bob has said that getting cancer has been the worst and best experience he's ever had. I have said those very words myself. So much more of the world becomes exposed to you. You become more conscious of what’s really important as you watch others shuffle through life thinking they have all the answers. I just smile and say to myself, “They just don’t get it.” And because I was once one of them, I understand why. You need a life-altering equation to discover a life-clarifying answer.
|Bob and Joyce - Relay for Life|
Bob and Joyce are in this together. Joyce, the ever-loving wife, tries to understand every procedure and chemotherapy Bob encounters, so she can provide him with the best possible care. It’s the minefield side of the equation that leaves most minds boggled. Joyce shows the outward signs of stress with every breath, while trying to keep herself together so she won’t fall apart in front of others, especially Bob.
Joyce plays caregiver while still working for the American Cancer Society. She’s not new to the cancer equation, yet she finds it difficult at times. Joyce says, “As a caregiver, here's the deal....you are in a constant state of helplessness. I can't count the number of times I've said, "Can I do anything?" She maintains her own blog, THE LATEST FROM BRANDON, recounting their struggles with this deadly disease.
Caregiving is not an easy task. I have been on both sides of that coin, and, at times, I too have felt helpless and overwhelmed. After all, you’re responsible for someone else’s life.
Even though loved ones and caregivers are directly involved with treatments and the daily routine, no one will ever understand the philosophical side of life better than a cancer patient. But even when giving clarity, cancer does not reveal all of life's secrets. We still need to learn from others. With this in mind, I asked Bob if he would answer a few questions in his darkest hour. He graciously agreed in the hopes that others may learn.
The following participants have been carefully chosen from around the globe to ask Bob, a miraculously strong man staring death in the eye, some hard-hitting, direct, personal questions. These are people who have successfully mastered the art of living with cancer and have the insight to ask real questions, based on personal experiences. Though Bob is unable to speak at the moment, it did not stop him from communicating. From Bob’s bed, with hospice hovering nearby, he answers questions from others who also have had their lives altered by this voracious disease.
Jeanne Sather, from Seattle, Washington, is a world-traveled, professional writer and jewelry designer who has been living with metastatic breast cancer for 11 years, and has tangled with a deadly melanoma. She has had more radiation and chemotherapy then she cares to recall. At this point she jokes that there must be a pale green glow emanating from her body! Her cancer is considered incurable, but she continues to fight with a vengeance. She also maintains a no-holds-barred blog: The Assertive Cancer Patient
Jeanne would like to ask Bob:
Jeanne: What do you know now, that you wish you’d known when you were first diagnosed? Do you have any regrets?
Bob: As Joyce and I look back over the several things that were revealed to us about what was being visited upon us, we both agree that knowing more would not have been helpful. The information was given out or dispensed in the right portion so that we were not too overwhelmed by the totality of it all. I think at each turn we were hopeful that this was the last episode as opposed to knowing there were five such episodes to come. We were given several courses of action to choose from, radiation, surgery, and if we wanted to go outside the standard medical treatment scenario, we could have selected a holistic approach. Traditionally, this has not been a direction we would take and did not want to take this type of treatment at such a dire moment within our life.
We have continually placed this within the lens of how we view all things and that is one of the Biblical World View. How is our experience consistent within the context of historic characters of faith, and how is our behavior consistent with those of the same characters.
Sharifah Rashida bt. Syed Ahmad, has been teaching English Language, Commerce, and Mathematics for 17 years and resides in Kedah, Malaysia. She lost her tongue to cancer (total glossectomy) in April 2008, being led down the same ugly path as Bob and I. Her country provides government managed health services and Sharifah’s care seems to be remarkably on par with the U.S. While still on a feeding tube, she’s lovingly named “Miss Peggy,” she longs for the day a simple piece of bread with butter will pass her lips without a struggle. She maintains an insightful blog: THE TONGUELESS TALK - Battling Oral Cancer, recounting her fight through the oral cancer jungle.
Sharifah’s questions to Bob are:
Sharifah: I’m curious to know how you handle your emotions when you have run out of options and know your time is almost up? Are you trying alternative treatments or are you willing to?
Bob: As far as our emotions go, we have been at opposite sides of the spectrum at the same time and at different times. We remain faithful to the Biblical World View, meaning that those things (principles) we have held dear to as young people, then as young parents, we will continue to embrace them as we grow old and are threatened by the issue of cancer. At this stage of life we do not question “Why me,” but rather, “Lord, since it’s me, help me to manifest outwardly those attributes that most reflect Your Love, and Grace.”
Joyce and I have not embraced alternative treatments in the past and don’t judge or criticize those who do, but since we’ve no first-hand knowledge of “lemon grass” or other popular topics of the day, we decided to stay with those treatments that have more consistent documentation through the medical community. I have no doubt there are success stories to be heard, but I’m not certain that for my tumor type or cancer type I would want to expend the emotional calories.
Dawn, is a retired nurse practitioner living in Richmond, BC, Canada. She was apprehensive about posing a question to Bob because the subject hits too close to home. Her father died within three months of being diagnosed with a colon cancer that wasn’t caught until after it had metastasized, which was discovered during a routine chest X-ray. Both her aunt and uncle are currently in palliative care. Bob's blog brought her to tears, making it too difficult to ask a man in his position a question. After careful consideration and a little prodding, she finally relented with this question for Bob:
Dawn: Thirty-five years ago I was administering Demerol to a woman whose life signs were fading and with her last breath near, she asked, “Am I dead yet?” I still remember that day. Do patients ever realize how hard it is for health-care professionals to care for terminally ill patients, and not take the thought of them home with us every night?
Bob: Dawn, I must confess that medical personnel are not the first thought I’ve had considered when discussing my diagnosis, but I’m often reminded in conversation whether the nurse or doctor is in need of a good word when having to discuss bad news.
Dr. Wendy Harpham is a doctor of internal medicine and 19-year survivor of multiple recurrences of lymphoma. When ongoing illness forced her to retire from clinical medicine, she turned to writing and speaking to help others. She's written award-winning books for patients and has a regular column --"View From the Other Side of the Stethocope" -- in a professional oncology publication. She also has an active blog, entitled: Dr. Wendy Harpham - On Healthy Survivorship. All her work revolves around the notion of Healthy Survivorship, a term she coined in 1992.
A "Healthy Survivor" is a survivor who (1) gets good care and (2) lives as fully as possible. I am assuming you are getting optimal care, which means your cancer has received the best treatments to control it, your pain is optimally controlled, your nutrition is optimally managed and so on.
Dr. Harpham: Your treatment options have run out, and you know that most people in your situation die from their disease. How are you calming your fear of the unknown, and how are you quieting the grief over losing everything you know and love, so that you can “live as fully as possible” until you die?
Bob: Pointing back to the answer of Q#2, I think it’s necessary to point out that we look to the writings that support our faith of purpose, direction, and motivation. I look first to Psalms 55:22 to help frame the situation for me and allow my limited mind to grasp the infinite. “Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken.” I have applied this to both sides of the grave and find comfort in it.
In a summarizing way, I would say applying the Biblical Worldview would also indicated a life time of Bible studies and discussions of practical application of these end of life scenarios have helped in “calming fears of the unknown.” We have learned to be absent from the body is to be in the presence of the Lord. There is some consolation in that as well.
Daria Maluta, is a breast cancer survivor from Edmonton, AB, Canada who was first diagnosed in 2000 with a recurrence in 2004. Four years later a lump showed up during her annual mammogram. Further investigation revealed her Stage IV cancer had spread to her bones, liver, and lungs. She has been on constant three-week cycles of Taxotere chemotherapy since August of 2008. Her father had bladder cancer and her father-in-law died of brain and liver cancer. She authors Living with Cancer, a very interesting and detailed blog surrounding her high and lows with this dreaded disease. Daria had a whole list of questions, so we picked her most important:
Daria: Spiritually speaking, how has this disease altered you…from the inside out? Speak to being more mindful…a greater awareness in the present moment.
Bob: The disease itself has allowed me to move from the intellectual knowledge about Christ to a full emotional buy-in to all the teachings he has instructed.
Carl Wilton has been a Presbyterian minister for 19 years at the Point Pleasant Presbyterian Church in Point Pleasant Beach, New Jersey. Diagnosed with non-Hodgkin lymphoma in December, 2005, he went into remission for eight months following chemotherapy, after which his cancer returned in an indolent form, one that's considered incurable, but treatable. He's been on a watch-and-wait protocol ever since. Carl continues to reflect on life, health, and faith on his blog, A Pastor's Cancer Diary.
With all Carl's experience surrounding spiritual life matters, he brings forth this question:
Carl: How has your awareness of God's presence in your life changed as you've come to contemplate the inevitability of your own death?
Bob: His presence in my life is only more evident with each passing moment.
I have so many questions for Bob. After all, this could be the one man who could save my life by my learning from his mistakes, but there is one burning question that haunts me every waking hour: When do I give up? So I had to ask Bob:
Brian: It appears you might have run out of options, are you contemplating giving up the fight?
Bob: I can’t tell the difference between “giving up” or resignation. My comments mentioned above might put proper understanding to it.
While some cancer patients and their families might choose to ignore the pink elephant in the room, these participants groom it, feed it, and ride it into the sunset, by blogging, writing books, and inspiring others with the spiritual aspects of the cancer realm.
We all are going to die, never knowing when. Are you prepared? Will your loved ones be provided for? Have you thought about putting a plan in motion before something happens? What will you do with the time you have left?
Live your life strong, no matter the length, and count your blessings, especially if it’s longer without cancer. But even if you find yourself in our shoes, it’s not over unless you stop fighting. Don’t waste it. Plan ahead for the darkest hours and do something life-changing today.
With Bob leading the way, we’ve managed to examine the beginning, middle, and end of the cancer life cycle. And in the end, that’s all you really have…The End
A final thought:
“I think those that do not encounter cancer are missing out on one of the most enriching times in life. People choose this time in life to share how much they care for you ... do yourself a favor, don't wait for your friends to have cancer to let them know how much you enjoy their company, or care for them. Find a reason to tell your non-cancer friends how much they mean to you. Your life will be enriched by it ... without the whole cancer thing.” –Bob Pemberton
©2009 Brian N. Walin (All rights reserved)
LINKS: PART 1 - PART 3