It is hard for me to write this post because I am so weak and so miserable. At the moment I am existing, not living, There is never a minute I feel anything but miserable, and some days I am also nauseated from day to night. Two days ago was one of those days. I spent much of the day with my eyes closed, breathing in and out and trying, but not succeeding, not to get sick. I have no appetite and little appeals to me. I force myself to eat and drink in order to survive but I do not enjoy it and each day it becomes more of a challenge. I look so thin, it is frightening, except, of course for my belly. My best description of my belly is Danny DeVito as the Penquin in Batman Two. It has even gotten to the point where I can barely concentrate to read. My body is breaking down and I can feel it getting a bit worse every day. Sleeping is a challenge. At best, I doze off and on, feeling miserable in between. At worst, like last night, I wake up coughing and then get sick even though there is little in my stomach and I cannot afford any loss of calories. How I feel is horrid and certainly makes me understand why people can lose their will to live. When living is agony every minute it is hard to remain upbeat and strong. When living is just counting off the minutes of the days, that is not living.
My next immunotherapy treatment is in a few days and I am determined to get it. I even arranged, the day before, to get hydrated at Karmanos because I know I am dehydrated from getting sick every day and because drinking is a challenge. I worry I will get too dehydrated or too ill to undergo the treatment, and I definitely intend to undergo it. Without treatment, it appears inevitable that my body will continue to break down until it stops working. I could spend this whole post writing about how difficult this is and how much I am suffering but I refuse. Instead, I want to talk about the love around me as I suffer.
My husband has been my main care giver. Alan has barely worked the last couple weeks, but instead spent his time caring for me, feeding me and assuring me, when I say I am no companion, that he just wants me here and wants me to survive this. The worry on his face is never gone but the love is in everything he does. We continue to cry together and he tries to tempt me with food. He refuses to let me be alone, only going out when others are here. Alan is such a beautiful soul, and I want to survive and spend more time with him, living, not just existing. His sleep is as bad as mine because he hears every time I am up or getting sick. He calmly takes care of me and comforts me every time I cry, which happens a lot.
My kids have been wonderful, sending me texts that they love me and calling. Sara was here the other day when I got sick all over myself and in the bathroom. She got me clean clothes, helped me strip and clean up, and helped clean the room. I cried that she had to experience that. When she left, she sent me a loving, encouraging text that made me cry. Alex, of course, is always being a care giver like his dad and walks around with tears in his eyes as he looks at me.
My friends have been wonderful. Deb brings me a smoothie every morning and checks on me. Judy comes by just to watch over me. They check in on me every day. Jackie checks in every day and comes to watch over me. Then there are other friends. My friend Karen, in Tucson, sends me an inspiring quote and then some memories of when we were young, every day. Dianne came over and read to me yesterday as I was suffering. My e-mail is full of messages from people at work telling me they are praying for me and I am in their thoughts. Joe and Laura came to visit and their love and concern was so apparent. Our Dallas office sent cards and flowers, as did Kelly in Dallas. Nicole and Don sent flowers. Three women from my office, Christyn, Meg and Daniella, send a cooler filled with a week’s worth of food. Ava sat with me while I simply closed my eyes and breathed. Kate brought me an inspiring book and Kathleen brought me tea and a smoothie. In the meantime, Lynn is beside herself because she wants to do something for me. At one point yesterday, Diane and Alan, Joel and Jackie, and Geri were all visiting. The cards and flowers have been nonstop. Today I opened about ten cards. Each one made me cry. These are only some examples.
My family came over Wednesday and want to visit every week. My aunt, uncle and cousins cried when they saw me, but their love and concern and their visit meant a lot. Clarice made me her pound cake, which she knows I love, Denise and my aunt and uncle brought meat and spinach pies and grape leaves. While I could not eat them, my family enjoyed it. Mary is coming today. I suspect she will be shocked at how bad I am – she last saw me five weeks ago when I was doing a lot better. Then I drove to her mother’s with lunch and we enjoyed it together. Today, driving anywhere is a pipe dream.
The love I have received has kept me going in the face of the agony I am feeling. It has caused me to force myself to eat and drink and to fight back. I hope that the next treatment starts providing some relief, so that I can live a little, eat more, stop losing weight, and can be aware and awake most of the day. For all the love I have received, thank you all.