Love And Misery

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.

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9 thoughts on “Love And Misery

  1. Karen Peters says:

    Now I am crying 😦 I wish we lived closer so we could do more. Know that we think about you everyday and pray for you. Love, Karen

  2. Alene Lipshaw says:

    I think about you every day, Marilyn. I am so sorry you are going through this and wish there was something I could do to make it easier for you.

  3. My Dearest Sister words can’t describe how bad I feel !When I gave the toast at Ed’s wedding last weekend I told them all why you and the Family where not present I told them my Dear sister is extremely ill and stricken with cancer so can you all please pray for her and the Family !All where touched since I also told them how brave, strong and great you where all of our lives and only wished we lived closer so we to could help care for you !

    May God comfort you and May he give you strength to continue your battled !

    Love you now and forever!

    Phil

  4. Becky says:

    I am warmed by all the love you have in your life. I know it is giving you strength during this time. I pray daily that your treatments will bring the relief we all dearly wish for you.

  5. Dianne says:

    Marilyn,
    Let’s hope the next round brings relief. Love will continue to give you strength. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

  6. Jean Ritok says:

    Marilyn, you have often been in my thoughts these days. I send you energy and the loving support of the mysterious forces of our universe. Joe and I wish you blessings and peace of mind in the midst of all this.

  7. Susan Steinberg says:

    You are always in my thoughts and prayers .You are blessed with Alan and your children. My heart breaks for you having to have to endure this illness . Like everyone else I so wish I could do anything to make it easier.

  8. Bill ….Marilyn, this is heart-breaking. You are always in my prayers in hopes that you get a reprieve from the daily weakness and sick feeling your going through. I love you so, and this makes me terribly sad. Much Love, Bill, Duke, Spencer and Laddie (the gang)!

  9. Maud Gosse says:

    Dearest Marilyn, I am praying your next immunotherapy is much better. I’m amazed that you can even think about your blog…let alone to say write it. I feel it has been very selfish of me to even look forward to reading it when you feel so awful. Sending you tons of prayers, positive thoughts and hope that this will work. You are so lucky to be surrounded by your loving family and friends during this tough time but your fight, will and determination still shine through. Lots of love Maud❤️❤️❤️

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