I went to a writing workshop last Saturday and was among a great group of people and speaker. Attending these types of meetings is not easy for me and I always vacillate about attending them. When my husband was still with me, and I would tell him about any type of writing get together, he would always encourage me to go. I think I would tell him, just so he would do that because I needed the push to get me out the door. This time he was not here to coddle, encourage, or build my confidence up so that I would go. I had to do that for myself and it was not easy. But in the end as always I was glad I went.
What really resonated with me during the workshop was the realization that even though I am 51 and unpublished, I have still been writing and building up a considerable amount of material over the years. I have written novels, poems, partial screenplays, endless journals. Writing it is what I do, sometimes for personal consumption only and sometimes for broader purposes. But regardless of the reason, I write everyday.
An ironic note to add is that I have been trying to figure out how to get more writing done in a day and made the comment “please don’t say get up at five am.” And wouldn’t you know it, I decided the only way to get more writing done during Nanorimo 2013, is to get up earlier and yes that is the five am hour. Ah, never say never.
I thought I would share one of the four essays I wrote over the past few weeks that were required during an English class I took online. It is a narrative and personal.
Life and Death Decisions
A switch gets flipped when you’re sitting in a doctor’s office and he remorsefully looks at you and your spouse and says those two switch flipping words “its cancer”. Those words are a game changer. You hear him explain the statistics and life expectancy and it feels like it is coming to you in a foreign language that you only have a vague understanding of. And while you are trying to mentally grasp and translate the words some of them are getting lost in the void of this cannot be happening. I realize our situation is not uncommon, especially in our world today. Even though it may sound cliché` to say “I never thought it would happen to us,” is exactly how I felt, as I set with my husband in the doctor’s office in 2007. As the doctor remorsefully looked at us and I heard two words that changed our lives forever “melanoma cancer”. It was weird how my mind understand those words but my comprehension refused to process them, I wanted to hear the “but” part of this diagnoses, “but we got it all”, “but it is curable”. Those words didn’t come from the doctor; he just looked at us and then turned toward his computer laptop that set on a portable stand.
I slowly looked up at my husband, afraid he would mirror the fear I was feeling but he did not. I saw that he had already accepted the doctor’s words without shock or misunderstanding. He was looking down at his large work worn hands, rubbing his thumbs together, like he always did when he was thinking deeply, and then he said “how long do I have.” With that question I covered his hand with mine and made up my mind that the choices he made, I would support him and do whatever I could to ensure we had as much information as I could to make informed choices. I made that decision not realizing there would come a time that the cancer would spread to the point that he would no longer be able to decide. The doctor turned back to us and referred us to an oncologist and expressed his sympathy as we stood up to leave the office.
As my husband and I held hands and walked out into another beautiful Colorado afternoon, with tears still wet on my face, I knew our lives were never going to be the same. I tried to prepare myself and our five children without becoming pessimistic or defeated. But it was my husband who really encouraged all of us by his attitude of faith and hope. And that gave me the drive to research every possible procedure, treatment and then I presented all the facts to him, that information combined with follow up appointments with the oncologist helped my husband to decide to approach his treatment holistically. I completely supported his right to choose, even though I felt a combination of treatments might be a good choice. I didn’t go against his decisions or try and badger him to make a different decision. I was shocked at how many people in our family and associations who disagreed with us. Everyone except for my 75 year old aunt who has been an RN for more than fifty years, she was the only person who really understood and said she would make the same choice if she were in our place. That was all the assurance I needed.
That was six and half years ago, and at the time of the original diagnoses they gave my husband a year with aggressive chemo treatment. Then two years later in 2009 the cancer had spread to his lungs and was considered untreatable and he was given six months. My husband continued to work and support our family while still applying holistic lifestyle changes. But in 2011, another two years later I rushed him to the emergency room for what we thought was a hernia from lifting heavy pipe at work. But instead we were told the cancer had spread even further and that there was a large tumor in his spleen, and they gave him six months. In March of 2013 the cancer had spread to his bones and he could no longer work and we knew that we had fought hard and won more years than they had ever thought possible. But ultimately the cancer had spread to the point where he was no longer mentally clear.
It broke my heart to see the damage the cancer had done, not only did it still his strength, and health, but it had now taken hold of his mind. He didn’t want to take the medication’s that would keep him calm and relieve his pain. He kept insisting he needed to go to work, or to a doctor’s appointment and fought to get out of bed. And now I had to go against his choices. I gave him the medication by syringe, with tears running down my face as I said I am sorry but I have to. I never wanted to have to go against his wishes but there was no choice for me. I didn’t want to make decisions that he would disagree with. But when someone you love is no longer able to coherently decide for themselves you have no choice.
Even now I wonder if we should have tried some level of chemotherapy, or radiation. I think about the trial cases and think maybe if we would have done that. But it was not up to me to decide and I am glad that I did not go against his right to choose. We had very long discussions about all of the treatments available to him, but ultimately the decision was his and I refused to make the choice for him as long as he was able to decide for himself.
I have been told since that is normal to look back after such a long ordeal and see areas where you might have made a different choice. Maybe if he would have done Chemo in addition to the holistic approach, would that have made a difference? You begin to question even the smallest, silliest choices realizing all the while that it does no good, that it will not change anything to keep yourself awake at night wondering. There is no way to ever know if a clinical trial would have helped him or killed him faster, but you wonder about the “what if’s”.
The decisions we had to make while dealing with a terminal diagnoses like stage 4 melanoma cancer were heart wrenching, but it was the choices that I had to make at the very end of my husband’s life that haunt me the most. Because my husband was no longer able to decide for himself and I was the only one taking care of him. Well, me and the nurse from hospice who would stop by twice a week to see how we were doing and make medication changes or order more medicine for him. For the first time in 27 years of marriage I went against his wishes and gave him the medications that he did not want to take. I gave them to him because he was in pain and I needed to keep him calm and in bed so that he would not try and get and potentially fall. And with every drop all I could say is “I’m sorry honey, I have to, I have to give this to you.” I will never forget the look of frustration on his face as I placed the syringe in his cheek and gave him morphine. The morphine that he said he would never take and that I was giving him so that he would be able to rest and so that it would relieve the pain.