I find it amazing how much energy it takes to watch someone in misery. Add the impotent feeling of not being able to "fix" any of the pain, fear or frustration and you get one very tense, stressed and sad Jacquelyn. A dear friend made a whisper of a suggestion that I might get a respite from caretaking, a awesome idea, can't figure out how to make that happen, one of the downsides of moving away from all those who know and love you. Well maybe not all, but certainly most. The past four days have been rough, rough like a surface that catches and snags everything that comes in contact with it, like feelings, confidence, and hope.
The long and the short of it is that Doug is unusually sensitive to medication, all medication, always has been, always will be. I am still shocked at times to see how sensitive he is to medications that the vast majority of people take with impunity. That said, you can imagine what happens when he is given the big guns of anesthesia or chemotherapy. I don't have to imagine, I am living it. He has received the equivalent of 1/2 half of a conventional dose of chemo over the past 4 weeks, it has suppressed his bone marrow, eaten up his muscles, inflamed his bowel, salivary glands and bones, while causing him to lose his hair, his coping mechanisms and his hope. His white blood cells are so low that he has had to receive injections to stimulate their production. We finally found a pain pill that doesn't paralyze his gut, though we have to watch the frequency as it is Tylenol based. So in a nut shell, his mouth is so dry that his lips stick to his teeth, his hair is dropping out everywhere (it looks like a demon hairdresser sneaked in last night and went crazy with thinning shears), his bones are more pronounced everyday, his booty has disappeared and there is now probably nothing he would not try to get relief from the misery.
I have had several insights into my own behaviors, actions and beliefs. I realized that the worst thing about trying to care for this desperately sick man that I live with is that I can't be a good nurse for him. I can be his wife, loving him in spite of himself and steadfastly caring for him by driving him where he needs to go, picking up chores that he usually does, preparing food for him and offering him my hand and shoulder, but he doesn't want or need me to be his nurse. I have figured out that when I can't be a good nurse, I feel scared, sad and very angry. As much as I have tried to shed my inner Florence Nightingale over the years, I am here to say that she is alive and well and wants to care for others. She also wants to ask questions to do her assessment of her patients needs and feels thwarted when they won't let her do her job.
Another not so pretty facet of me that has revealed itself during this time is the tendency that I have to appear cool, detached and unloving when I am very stressed with concern. I am actually very involved with an internal process of figuring out the best solution to the situation at hand, whether it is finding the right words to defuse a crying jag, getting us to the next appointment quickly and safely or what combination of pills, treatments or foods will fix the current ills. While I know what my intent and motive is, I realized that my demeanor is one of uncaring or angry detachment. I have worked for my whole life in recovery to have my outer face and actions match my inner feelings and thoughts, it is humbling to know that when my loved one needs me to be present in an authentic way that I have failed miserably to bring those things into line. The final insight that I have brought to light in the past month is my continued tendency to take lots of things personally. Whether it is my husbands sharp retorts to my endless questions or the clinics inability to get me scheduled for treatment in a timely manner, I take it as a personal affront. This chapter of my life is yet another nail in the coffin of my belief that I am the center of the universe.
So things are looking up, Doug slept 8 hours last night, in our bed no less. He had an acupuncture treatment yesterday and a Neupegen shot. The Ultracet that he started taking seems to work better than the Vicodin and he has started eating. He is still in pain but is better able to cope with it. I am getting better at efficient raw food prep and feeling more energetic and productive. We don't have to go anywhere for the next 3 days as we took most of this week off from treatment and I think I might actually get some things done that I have been meaning to do for at least two weeks. Right now I have to go work on doug's back to see if I can help him with the spasms that he is having. Not being a nurse, just a wife who happens to have some healing abilities.
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