Sorry to interrupt our Italy trip but I need to post this today.
For the past several months I have noticed that I can hear music at night. Once we turn off all the lights and settle in for the night I start to hear it. At one point I asked Bill if he could hear it as well, though I already knew his answer.
Last week we discovered that I cannot tolerate the higher calorie forumula of the TPN. The 1500 calorie version requires an 1100 cc infusion overnight. Just that extra 100 cc was enough to cause edema in my arms, legs, and lungs. Given this and the fact that I can eat only very small amounts, the amount of weight I can continue to gain on TPN is very limited. This was quite a setback, physically and emotionally.
I finally convinced Bill that I really wanted a hospice consult. I first told Bill in February, weeks before the feeding tube was placed, that I could feel my life drawing to a close. Of those initial feelings, it was my niece’s christening where I felt it most acutely. I have always been the family photographer, the recorder of events. It is a role I played with great relish. Nothing pleases me more than capturing a candid moment forever. But on that weekend this beloved hobby felt somewhat like a chore. The camera felt heavy in my hands, especially with the telephoto lens attached. Just that little added weight made me breathe harder. As I looked through the lens at that little baby I could feel my heart breaking; I knew in my heart that I would not live to see the sweet little girl grow up.
The hospice consult was helpful in so many ways. We learned that I did not have to give up TPN to go onto hospice given that I am unable to eat much. What a relief to know that enrolling in hospice did not require me to starve to death! Bill and I spoke at length with the nurse about the orientation of hospice. Their goal is to make the patient as comfortable as possible and provide physical and emotional supportive care to the patient and the family. The goal is not the quantity of life but the quality of the life and the death. Speaking from his experiences, the nurse assured me that hospice uses many palliative approaches and that my comfort would be paramount. For the first time in months I felt like someone looked at death the way I did: as a necessary part of life.
To say that I have been uncomfortable for the past 8 months is the understatement of my life. The physical pain and discomfort from the feeding tube, the side effects of various medications, the unrelenting cough and retching, and the increasing shortness of breath have conspired to bring me to new depths of physical misery. Compounding the physical effects, the emotional and spiritual challenges have been, at times, more than I thought I could bear. And though I have been surrounded throughout this ordeal by enormous love and support from my husband, children, family, friends, and even strangers, I have felt a loneliness that I never knew existed. Only I can make the choices before me: feeding tube or no feeding tube, TPN or no TPN, experimental drug or no experimental drug, hospice or no hospice. Thus, I have to live with the knowledge that my choice has repurcussions that will ripple beyond me to my husband, my children, my parents, my brothers, my friends. By choosing to let nature take its course and end my suffering, I sentence them to theirs. I cannot win. I cannot win.
My friend Amy told me, “If your dying and being free of your suffering means that I have to suffer a little for you, then I am happy to carry that for you because I love you too much to see you suffer anymore.” Wise and loving words these are. But I don’t know that everyone feels the same way. How do I weigh my suffering against the suffering of my children? Who will ultimately suffer more? How do I know?
Among the literature that the hospice nurse left with me was a brief pamphlet on the stages of death. In one stage the dying person is said to have “one leg in this world and one leg in the next.” “Maybe that is what the music is,” I thought. It’s the next world.
I cannot make out the music. But there is something about it that worries me: It sounds like muffled 70s disco music. I swear it sounds like Earth, Wind, and Fire and Kool and the Gang. I was pondering this today. Lately I have started to embrace the idea that our spirit lives. With Mel and Amelia running around shaking my bed, it’s getting hard to deny it. But I am having a hard time with the idea of heaven as a 70s Disco. That sounds more like hell to me. Today it occurred to me, “Perhaps I should have taken that whole premarital sex thing a little more seriously.” But then I remembered that I confessed that to a priest the first time I was in Rome (he was very unkind and told me, “There are words in English for women like you”) so technically I am off the hook for that. I did miss Mass a lot. Perhaps I better confess that soon. Maybe then the music will switch to something a little more pleasant.