Co-authored by Karen Bloch Morse
There is nothing easy or natural about watching your 41-year-old friend (of 41 years) -- who, by all counts, looks healthy -- wither away and die from lack of nutrients. Human instinct is to beg her to please eat, please drink. To remind her of all she has to live for. But that would not have been fair in this case. Debbie Fink Green, my oldest friend in the world, was, in fact, dying, and she was, in fact, out of options. To deny her support for this most unfathomable of decisions would have been nothing short of selfish.
Debbie's fight against appendiceal cancer began in August of 2011, six days shy of her 38th birthday and three months after she got married. Debbie publicly chronicled her treacherous journey in detail on a Caringbridge site and later in a series of blog entries here on The Huffington Post, both of which were read by thousands of friends and complete strangers alike.
Debbie's journey came to an end on April 1, 2015, but not before we discussed some of her final thoughts (below). She was exhausted and on some heavy meds, but we agreed that both her dedicated community, and her story, deserved an ending. It is certainly not the one for which any of us had hoped.
One of the most disconcerting aspects of the last 3.5 years was the incongruity between Debbie's exterior and interior. Even through chemo and multiple surgeries, she somehow managed to maintain a healthy, strong exterior, a shockingly normal schedule, and a full head of hair. She organized Mah Jongg games (which she had learned during one of her hospital stays), and went to pilates regularly. Debbie had celebrated her stepdaughter's bat mitzvah in late February and looked better than ever. But, as she often said, her outsides did not match her insides.
As a result of my last surgery, I had recently been dealing with a bowel obstruction caused by scar tissue, making it nearly impossible for me to eat or drink without severe pain and vomiting. Despite my discomfort, on March 7, I surprised Dave with a night at a local resort, determined to celebrate his birthday in style. We had a wonderful day in the sun, followed by indulgent spa treatments, and then an unfortunate evening of me violently throwing up. The next day, I found myself back at USC Hospital on IV fluid and TPN (total parenteral nutrition), e.g., a feeding tube.
My team at MD Anderson had had enough. They decided to perform an exploratory surgery, which could potentially help remove the blockage and allow me to eat and drink normally once again. I remained on TPN for 10 days until surgery, an experience I did not want to prolong or repeat.
Prior to the surgery, my surgical oncologist, Dave and I discussed the procedure, and I again reiterated my position about not living the rest of my life on TPN. But it was all theoretical at that point. I still hoped for the best and couldn't imagine anything but a positive outcome.
Upon being opened up in Houston on March 19, however, the doctors found new tumors, which not only prevented them from reaching the blockage, but also meant the disease had returned with a vengeance -- now on my new bladder, my bowel, and all over my abdominal wall. Beyond the return of the cancer, most devastating was the fact that the bowel obstruction could not be removed.
The doctor, Dave, and I reconvened later in the day while I was still woozy from the anesthesia. I was again given an option to remain on TPN indefinitely, which the doctor felt would only buy me a few months. ("Maybe the summer?" he suggested.)
He told us chemo was not deemed an option, as the tumors did not appear on my most recent scans and couldn't accurately be tracked. TPN was the only option, and now that I was facing the reality of it, I was forced to rethink everything. I knew the TPN (which would be administered via IV for many hours overnight), was not for me. Outside of the potential complications from living on TPN, food is too integral to my happiness and well-being, and I am not willing to sacrifice any more quality of life: Imagine not being able to put a morsel of food into your mouth -- for the rest of your life.
Which leads me back to where I am today. Over the past 3.5 years, after 25 hours of surgery and 16 rounds of chemo, cancer has taken my ability to have a baby, my sex life, 14 of my organs, and now my ability to eat and drink. This is my breaking point.
Following my failed surgery last week in Houston, I was faced with an impossible, unimaginable decision. I chose, once and for all, to take control of something that's been controlling every aspect of my life for the past 3.5 years. I exercised my right to refuse TPN and withhold all food and liquid (not that I could digest it anyway). I chose the path that I feel will allow me to die with dignity and the least amount of suffering. Right now, I am on day eight without food or liquid (save the occasional popsicle and ice chips to combat the dryness in my mouth and throat). I am under at-home hospice care, am very dizzy and nauseated, though I am successfully battling pain with the help of medicine.
I want to make one thing very clear: I am not suicidal. The last thing I want to do is die. I have so much I want to live for. But, at this point, I am not only tired of fighting, I am out of options
Yesterday, I developed a fistula, which caused my intestine to burst and has started the process of killing me through infection and sepsis. As it unfortunately happened at the surface, right where my scar is, fluids are periodically seeping out of me onto my clothes and bed, requiring round-the-clock wound care. This would have happened even if I had continued with the TPN, which reconfirmed that I made the right decision.
At this point, Debbie was too exhausted to continue dictating her thoughts.
Debbie spent the last week and a half of her life in her home, surrounded by family, friends, love, laughter, and tears. We rarely spoke of the elephant in the room. With her permission, we replaced her ice chips with flavored snowballs (a nostalgia-inducing Baltimore summer staple) made from a store-bought machine. The snowballs made her smile and turned that smile various shades of red and blue. I, along with a couple close girlfriends and the women in her family, gathered around her kitchen table and played one final, magical game of Mah Jongg, which Debbie won. We reminded her how loved she is, how special, how meaningful her life is, was, and always will be. We reminisced about happier times and held her hand. Dave indulged her with a bite of her universally-loved chocolate-chip banana bread the girls had made earlier that day, and she enjoyed every morsel.
Debbie's openness, which I once questioned, not only created a community, but inspired one. Her story is a reminder of how horribly unfair life can be, but also teaches us that such injustice can be faced with strength, grace, and courage. May her life and death rouse us all to be better, dream bigger, live fuller, laugh louder, fight harder, and not take one breath, one smile, one kiss, one rainbow, one birthday, one sunny day, or one friendship for granted.
I miss you, Debbie Fink Green. You were, and always will be, my forever friend.
Karen Bloch Morse is a screenwriter, whose work includes Center Stage: Turn it Up and Ice Castles. She lives in Los Angeles with her husband, their three children, and one ginormous goldendoodle.