I have already mentioned before that I love to read. Over the last two years I have been reading a lot of Victorian romance novels. This time I went for a contemporary novel and it’s not a juicy steamy romance. “Tea for Three” is the first in the series of three novels about friendship of three women. A lot of the last installment is devoted to the problem of Alzheimer’s disease. For me, it was interesting to read the descriptions of what the patient with Alzheimer’s felt. As I was reading the book today I wept. I was afraid of Alzheimer’s because I carry the gene. Now I’m not worried so much because I very well may not reach that age. What I am worried about is that if I ever get into situation where I’m not capable of caring for myself, nobody will. I mean, not that nobody will care for me, but those who will are not going to be my loved ones and really, I don’t wanna be dying surrounded by strangers. So time and again I told myself that I really really need to take care of my will and have exact directives pertinent to my medical care written and sealed. I need to spell out what to do or rather what not to do with me if I am incapacitated and not expected to recover any to the level of meaningful life. The added benefit is that my children will never be burdened to make these hard decisions. What I also find in the novel is how one deals with finality of the illness. You hear your diagnosis and even though you are feeling OK you know that in time everything will be taken away from you. And you have to deal with it – accept it, reject it, laugh, cry. The only thing you cannot do is pretend it is not happening. I have cancer. I actually have a really bad cancer (said my oncologist #2). Just like every cancer patient I am hoping to be cured from it. Unlike every cancer patient I know the realities and chances. Unlike many cancer patients I am doing much more to help myself. On the other hand I continue to have a very demanding life and I am sure some of it works against my best chances of healing but I cannot stop.
I am also getting more and more confused about my treatment. Am I getting the best treatment? There are so many options and protocols. I am at the last drop of my chemotherapy coming up on Thursday but was it really necessary? Is radiation necessary? In my early posts I have spoken about daring. It is different now. Will I skip radiation of several doctors say I need it? Probably not. I keep reading about all the options and I don’t know what would be the best for me. Doubts are eating me. I am much more used to certainty.
The surgery is set for July 7. I kept the date because numerology of it was more appealing. I was also told that my surgeon had already had another case on June 30ieth and I really did not want to go as a second case. I don’t want to stay in the hospital overnight. I am really afraid of metaphorical Nurse Ratched just because I know how helpless one is when being a patient in the hospital – completely at the mercy of so many others. My late father was hospitalized with neutropenic fever. His oncologist ordered CT scan for which he should be NPO (nothing by mouth). He was waiting for his turn for more than 24 hours and not given food, drink or fluids! No mercy! When I was 40 years old I had an issue that required ER visit. I was told to drink a lot of water and wait for an ultrasound. I drank and waited. And waited. And waited. And then I could not take it any more but I was still not called. It was MY emergency room, the same one where I was crowed the Queen so many times. The same one that I managed to turn around twice in the span of one night shift. Everyone knew me there. I was a legend. By the time they got to my ultrasound it was too late. I was helpless at their mercy. When my daughter was born and I was about to go home with her tired but happy I was told she had infection in her blood. Within the span of ten minutes she was hooked to antibiotics, had spinal tap and 2 days stay in the ICU just to find out it was a contaminated specimen or lab order. Someone’s mistake that annihilated all my attempts at NO antibiotics. So, after all these experiences I really do not want to remain in the hospital a minute longer than I have to.
There are days and there are days. Today the burden of my illness is squeezing my lungs and making it hard to breathe, it is whirling in my brain, it is turning me into a watering pot. Or maybe I am just so so tired but I know better than to ask for a break. It is like climbing the mountain. Like when I went to San Jacinto years ago. 100 steps. One minute. 100 steps. The top just feels so far away today. Tomorrow will be a better day. I am still very grateful to Melissa Crosby for three wonderful novels about friendship, love, and faith. They have evoked so many emotions but at the same time I can feel a small seedling of hope there.