It was the week between Christmas and New Years. This time of year is usually calm for Hospice patients and staff. Family and friends keep vigil at bedside as they all seem to know this will be the last Holiday spent together. This is a time for huddling together as a community and “outsiders” are kept at arm’s length. This was not the case for Mel.
Mel was 22 and from the moment he was on our service he was a heart ache. He had relentless and excruciating pain, he was afraid to die and deteriorating quickly. Mel had two younger sisters, his mother and an aunt who kept constant watch. Mel was beautiful, even in his declining state he had a translucent glow. He had a crooked smile that lit up the room. All the women in his life cared for him 24/7 with full attention and devotion.
Mel was a champion surfer and travelled the world. Just six months earlier he was conquering the waves and hearts of young women on the other side of the planet. On one of his recent travels to Indonesia he was struck down with abdominal pain that left him doubled over for 36 hours until he made it back to the states. It was soon thereafter that Mel was diagnosed with Leiomyosarcoma. Leiomyosarcoma (LMS) is a rare cancer. It is a cancer of the muscle, particularly of soft tissue muscle. It can appear in many places in the body, but it typically occurs in the gastrointestinal tract, which includes the stomach, small intestines, colon, appendix, rectum and anus. Unfortunately for Mel the cancer was well travelled through all these areas in addition to the kidneys, liver and adrenal glands. Typically, LMS is not a highly aggressive form of cancer and usually not considered life threatening if treated early. This was not the case for Mel. In hind sight his mother said she noticed there were times that he was holding his side or appeared in discomfort but they both shrugged it off to muscle aches and pains from a rigorous schedule.
Just a little over five months since diagnosis and after extensive surgeries, chemotherapy and radiation treatments he was referred to Hospice. His disease was too wide spread and the tidal wave of tumors too strong. His oncologists and nurses tried valiantly to cure his disease. Experimental procedures were done and yet nothing could hold back the virulence. Mel had years of only knowing youth, success and admiration. Now he was left feeling old, filled with despair and defeat…and he was my patient.
Prior to meeting Mel for the first time I was greeted by his mother at the front door. We talked on the porch. She gave me a brief overview along with a list of what “to say” and what “not to say” to Mel. I couldn’t mention the words Hospice, dying or any end of life verbiage. I could tell him that I was a nurse and that his Doctor had sent me to check in on him.
“Does your son know that he is dying?” I asked. Mom was irritated by the question and retorted, “Well he is on Hospice isn’t he?” I held firm, “Yes,” I said “but given his age and what you have told me it sounds like he really hasn’t had a chance to talk this all out with you. Sometimes simply having the conversation is more important and soothing than any medication we can provide.” Of course, mom broke down and it took another five minutes to reach a point where she was composed enough to let me in and meet Mel.
Mel was in the front main room in a hospital bed dozing. I quietly walked up to his right side while his mom touched his chest and introduced me. He gave me that wry smile, said hello and sleepily asked if I came with a bag of tricks? “If I had a bag of tricks,” I started, “what would you like me to pull out?” Again that crooked smile and with closed eyes he said, “Escape.”
I let that word settle on mom while I started to assess Mel.
Me: Do you have any pain?
Mel: He looked to his mother who pointed from the upper region of his chest down to his groin.
Me: So this whole area in here? (Circling his torso)
Me: Can you describe the pain for me?
Mel: Like I’m slowly being cut in half with a dull knife.
Me: Wow. That’s pretty significant. If I told you we could greatly decrease your pain but you may be sleepier for a few days would you be willing to try?
Me: OK. So being more awake is more important to you than dulling the pain?
Mel: (Looking up with his smile) Yep.
Me: This will be a challenge.
I completed the clinical part of my initial assessment and conferred with his MD on the phone. A simple narcotic regimen was prescribed along with a stronger version if needed. My mind kept circling around the facts that were obvious. Mel was young, successful, worked hard for 10 years to achieve the level of accomplishment he had, is surrounded by women, has significant pain and wants to escape and oh yea, he’s dying. And where is dad? Was there a dad?
While Mel lay sleeping I spoke with mom again and asked about his dad. I came to find out there was and is a dad. He was a surfer as well and actually taught Mel how to surf. Mel’s father had a love of the ocean along with a love for women and liquor. Mel’s father left 7 years earlier for a surfer’s reunion with some buddies to Thailand and never returned. His mother received a letter letting her know of his plans and simply wished them all well on their “adventures” as he was finally free to live out his. Wow.
“How did Mel take the news?” I asked. “Not well,” she said, “but he has never spoken about it since and decided to focus all of his energies and emotions into his surfing. He has done such a great job in making sure that his family is taken care of both personally and financially.” A quote came to my mind as she relayed the story, “Pain which is not transformed is always transmitted.” I suddenly felt that Mel’s significant pain was more heart related than physical. What to do?
As the next few days progressed so did Mel’s anguish and pain. Our spiritual counselors and social workers were forbidden to visit as Mel felt all they offered was “spiritual and psycho rubbish.” I wasn’t willing to take on that challenge and rebut. As he lay wretched in pain I begged him to let me give him more narcotic to help. He was adamant and defiant…”NO!” he yelled. “Then let me try another tactic Mel. You allow me to come into your home everyday to visit and bother you with checking your vital signs and haranguing you regarding your pain. Why?” “Because.” He grimaced. “Oh no, not that answer.” I blurted, “Let me tell you what I am going to do. I am going to turn you on your side because I want to check your skin. Then I am going to administer this suppository because you haven’t moved your bowels for a week and for good measure I’ll rub your back. While I am doing all that I want you to talk to me about your dad.” His sisters and mom went still as did Mel but he helped turn to his side just the same.
I instructed Mel to close his eyes and breathe deep as my intrusive hands began. I simply asked him to find his favorite beach and settle in. Once I was done with the “dirty work” I proceeded to rub his back and gently asked him to tell me what he remembered about his father. An out pouring of stories came forth. Stories of his first surfboard, first wave his father helped him navigate and his first beer he drank with dad to celebrate his first win down in Australia. That was his “special place” he would go to time and again to reflect and escape. I asked his mother to bring out the trophy or whatever he won from that competition in Australia. She did and set it on his side table for viewing.
“What else do you have to say about dad?” I asked. “Oh you know the rest. He’s an ass and left us.” His body tensed as he stated the obvious. I continued, “Yea, I know the facts but I’m interested in how you became who you are today because of your father.” He was thinking. “He gave me the love of the ocean and a chance to be better at something than he was.” He was soft spoken and reflective, “I was a natural at surfing. I started winning competitions at 12 and he never even placed. I showed him. I lived a life of adventure and I stayed. I stayed with my family and I hope he is miserable!” Tears were flowing by everyone at this point. I so wished there was a therapist in the room to help put the pieces back together. But as usual, there I was in the mess of it. Whether I am shoving a suppository in or asking the tough questions there I find myself.
We all gently repositioned Mel to his back and the effects of the suppository and/or the emotional release left us with 3 bed pans full. The mood lightened greatly as we relived our junior high years with bathroom humor. Mel was exhausted but not in pain. I would like to think it was the emotional breakthrough that caused his relief but my nursing friends attest that it was the major bowel movement that allowed for the comfort. I think it was both.
He was fast asleep by the time I was ready to depart. I whispered good bye in his right ear. He gave me his unforgettable half smile without opening his eyes. I was torn. I had that uneasy feeling that this would be the last time I would see him. I wanted to thank him for allowing me to care for him and to go to his “private beach” but it felt too odd. So I gave him a squeeze on his shoulder and simply said good bye and walked out.
One of the most important lessons I learned from Mel was to be able to dig deep to help pain find its voice so it could teach versus control. I hoped that Mel would soon be able to ride that final wave out to sea and finally be able to escape. He did the next morning.