July 7 2011 was probably the worst day I ever experienced. Gerard, my husband learned, after 17 months of treatment that included 1 operation to remove 14 bladder stones. Another operation for removal of the bladder that contained a large stage 4 bladder tumor the size of a grapefruit, 6 inches of colon to create an Ileostomy stoma for urine, that required 6 weeks of recuperation and the removal of 14 lymph nodes for good measure. Plus 6 courses of chemo that always had to be stopped for infection that put him in Hospital for a full week every time. Radiation that caused Colitis in his gut, adding a new problem. Neuropathy that felt like daggers in his fingers and toes. Hundreds of blood tests for protein checks among other possibilities....was all that a highly trained team of doctors could do for him. The cancer had spread to his liver, giving him only four months on average to live, The Dr suggested that he get. his. affairs. In. ORDER. Take a trip, see friends. Live fully or just relax. When he was first diagnosed in October of 2009, we were told there was no reason he couldnt live another 30 years. Having that hope chipped away at slowly,puts one in a state of numbness because you want to hold on to that hope more than your own appetite, health and spirit without thinking another outcome could present itself. Months of treatment passed and we still had our hope between chemo and meeting other patients whove been living with cancer and they had reasonably happy active lives It took 18 months but I got him on full medic aid/medicare so the finances were fine. Gerard and I agreed that we both could live with that as long as he could run his store and I could do the occasional road gig on top of the sets in NYC. By March of 2011, we both silently knew that this was not going away. I asked for 5 more years. July 7th, the doctor gave him a choice of a new treatment with a 10% chance of holding the cancer back with tons of side effects. Normally, because of his Dutch accent and our oncologists thick Chinese I would have to translate to where I was sure both parties were on the same page. This doctor was not our Chinese Oncologist. He was the head of Bladder disease at Sloan Kettering in NYC. He was right to the point yet more personable than most surgeons as 60% of his job is to tell patients and families bad news. As the Dr. talked, I saw Gerard. He understood every word he was saying. As much as I loved him and stayed by his side every day at hospital, Dr appointment, Drug store to show him we were together and not alone. This was the moment where it had be about him as this was his life, he went through the physical hell and closed his business of 25 years because it wore on his body (He was a master upholsterer and lifting sofas and the eye needed to lay fabric was fading, I think he knew or accepted the possibility before me and started tying loose ends as to not put more on me and everyone around him). He opted for no more treatments, I didnt fight it. It was the least selfish thing Ive ever done. We sat silent on the train home from Midtown Manhattan to Bay Ridge. He stopped off to grab a very large bottle of Pinot Grigio, as he didnt need 2/3 of his meds anymore except for pain, and the pains meds would be the only thing hed need for the last 4 months. Where the dosage of Tylenol 4would be doubled weekly, to Methadone, to finally Morphine. That evening, Gerard drank his wine while he called his family in Holland. I called my family to break the news and they were upset beyond belief. Which made me feel loved as they have grown so much since coming out as a gay punk rocker in 1985. Friends from a secret FB page, were kind enough to put together a trip for us to The Netherlands as these people had been with us through the journey....honeslty, it is the nicest thing anyone has ever done. I made sure to remember that for the future should someone else needed help that went beyond monetary. After the calls were made, we ordered his favorite pizza and fish salad from Ginos on 5th and 74th in Brooklyn. After dinner, we had our favorite cakes from Jean Danet for dessert. We went home, and I....cracked In my mind, I took Gerard out of the equation and thought, for the first time, I thought about me, all the work (none of which I regret) the time, the energy to make Gerards life as smooth as it possibly could so that he may return to me stronger and healthier than hed ever been. I couldnt get off the sofa for two weeks....hes the one whos dying and hes helping me. I felt selfish, confused at my actions. But, he was dying and what life would be without him scared me, it wasnt fair. I actually believed my LOVE would save him. I developed major anxiety, swollen ankles due to adrenalin and blood without oxygen. Gerard took ME to see his Dr and confirmed it so. Promising once we return from Holland. The nurses and staff from Hospice will be a great support (FYI, they were right) We ended that evening, holding each other. Slowly moving to Edith Piaf, Im Your Boogie Man by KC % the sunshine band. We kissed, cried and just kept our eyes locked on each other. This was one of the last weeks I could see him be physically, mentally and spiritually intact, active and fully in love with me as I loved him. In August we went to Holland, In September he went to bed as we both witnessed a million little deaths to prepare us for the finality (I.E. when he couldnt handle a knife to cook, escorting him to the shower and bathroom, then knowing it would have to be done in bed.) In home hospice was wonderful, they seemed pretty relieved to know that we were not in denial and we curious of the entire process. Gerard and i talked and talked to where we knew were we stood. There were no questions. We just needed that moment. When he died on November 19th 3pm. It was sad, no doubt. But after 2 years, one month and one week of relying on the medical field, the internet, friends and family for help. We knew what to do, It was the one time we felt cancer didnt control us. I played his favorite Piaf song Non, Je ne Regrette Rein. Splashed Aqua Di Parma, his favorite scent outside of Vetiver, I held him in my arms and told him If you loved me you would go. His eyes widened, I knew after weeks in a high Morphine haze, he heard me. I thanked and praised his presence in my life and made sure the last thing he saw was me, smiling lovingly into his eyes and he said good bye with his eyes and saw him aiming at a vision he wasnt afraid of. I told him to go, Ill be fine and the sooner you go, youll feel better and then can watch over me. I consider this moment, my finest hour.
Posted on: Mon, 07 Jul 2014 06:52:31 +0000
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