Dying By Inches

As I sit here today, I have had my second immunotheraphy treatment and have to wait until September 1 for the next treatment.  Although I have had two treatments, my symptoms keep getting worse.  Every day I wake up weaker than the day before.  Except for my emaciated chest and arms, every part of my body is now swelled to extremes.  While I wait to see if the treatment will work, the cancer is relentless and continues to advance and attack my body.  I cannot sleep.  I cannot get comfortable no matter what I do.  My only escape is when I doze.  I dream about being sedated for three weeks until my next treatment to escape what has become almost unbearable to me.  This has happened fairly quickly.  Alan looked at his credit card bill and only one month ago we went out to dinner. Since then, except for doctor visits we have not been anywhere.  It is somewhat hard to believe this is happening so quickly.  Frankly, based on how awful I feel, it seems forever since I felt even a little normal. What I do feel is that I am dying, agonizingly, by inches.  Every day I hope that I will at least stabilize.  So far, that has not happened.  Instead, every day I am a little worse.  I still shower and dress myself, but every day that becomes more challenging.  I am also so short of breath from the pressure of the swelling that even taking a few steps leaves me breathless. In the midst of this, I am also losing vision in my left eye.  I am supposed to see the eye doctor, but I feel this is just more of an insult.  The suffering from the cancer  seems to be enough without adding to it.

We obviously are hoping for a miracle with the immunotheraphy. If it does not work, however, I think I am out of options.  At my appointment Tuesday, the social worked talked to Alan and I about hospice.  She was not suggesting I go into it yet.  She was, instead, getting us ready to think about our options.  Alan and I have also discussed getting some personal help for me.  As a person who has always been strong, independent, and able to do what I put my mind to, it is a new experience to feel so helpless.  I no longer feel comfortable being alone.  Luckily between Alan and my kids and friends, I have not.

Knowing I had advanced cancer, I  knew there would be tough times.  I did not envision just how horrible this would be.  Of course, Dr. P told me the amount of fibers in my belly, which prevent drainage of all the liquid building up there, are among the worst he has seen.  Lucky me.  I did so well for so long, that this sudden onslaught has been somewhat a shock to me, my family and friends.  My plans for Napa, for going back to Utah, for returning to South Beach, are all on hold.  I hope to get well enough to return to Utah but I told Alan the other day that it was possible I would not see our house there again.  I am not being morbid, just realistic.

Alan and my kids are wonderful.   Their care for me is amazing. Alan never stops and he cries with me every day.  Sara and Alex have both cared for me, and both had to help me clean up after I got sick.  I have spoken to them about the reality of what I face, and how much I love them.  I watch their faces and the pain and stress they feel watching me suffer is almost too much to bear.

Every day I cry over this situation and the fact I am surviving, but not living.  The surviving is not fun.  My family and friends sense how bad things are, and I have had a constant stream of visitors.  Sometimes I doze while they talk.  Yesterday I slept for 30 minutes while my cousins Denise, Clarice and my friend, Jen, visited.  Other times, I am able to talk and their visits provide a welcome distraction.  My kitchen looks like a florist shop with all the flowers that have been sent or brought over.  Every day I receive a slew of cards encouraging me.  Every one I read reduces me to sobs. This is not a bad thing.  The love and care is constant. I talk to Deb and Judy every day.  I receive numerous texts and messages telling me to stay strong and that my friends love me.  Yesterday, my friend Danielle told me how important I was to her as she gently massaged my legs.  Diane has returned again and again and is my source for feta cheese, one of the few foods that taste good to me.  I wrote in the past that the love people express, the feelings they express to me, and their blanket of support, is a silver lining of cancer.  It does not take away the suffering, but it reminds me I am cherished.

I know this post is a dark one.  I felt I had to describe how it feels to be this sick.  This does not mean I am giving up and telling the cancer you win.  It just means I am realistic and want to convey just how difficult this struggle has become.  I refuse to say this is the last time I will post.  I refuse to say it is over.


7 thoughts on “Dying By Inches

  1. orbachphd says:

    Dear Marilyn,
    I have been one of the more silent ones but I want you to know you are very present in my thoughts. I am so saddened to hear of the suffering you are having to endure. Please know that I have and will continue to wish for the best for you. You continue to possess an amazing vitality for life and connection with others even in the darkest of times. I am in awe of you and all that you have created.
    Love, Sue

  2. Jean Ritok says:

    Jean and I have been following your heroic battle from here in Chapel Hill. We are impressed by your combination of optimism and stoicism. It is also wonderful that you and Alan have so many friends and and relatives to accompany you on your journey. We think of you often and you are in our prayers.

    Joe Ritok

  3. Karen Peters says:

    Marilyn, I feel so bad by how this f$$$ing cancer is making you feel. I know what a strong person you are. I am glad you have loving family and friends near you to support you at this time. HUGS to you, Alan, Sara and Alex.


  4. Maud Gosse says:

    Marilyn there are no words…your strength and determination are just unbelievable….I pray every day that you will get well! Please God let it be. Maud xxxxxoooo❤️❤️❤️

  5. MY DEARST SISTER , For the first time in my life I don’t know what to say ? We are both talkers and writers but I’m lost for words all I can say to you is that I love you with all my HEART and SOUL ! I just prayer with anger and love to God to heal you and told him why must you let her suffer I don’t understand PLEASE HEAL HER NOW her work on his earth is not complete !

    You took my Father and My Mother and many Aunts and Uncles and Friends over the years but I’m still lost—- I know it part of your plan but I’m searching to see why you let good people suffer show us your love once again and give us the miracle of life for my Sister -PLEASE DEAR LORD HEAR OUR PRAYERS –SAVE MY SISTER NOW !



  6. Susan Gwizdz says:

    Dear Marilyn Rick and I are so sorry to hear you aren’t feeling well…. words can’t describe our admiration and love for you… We are so deeply saddened that you,our friend and mentor is having such a hard time. I’m praying for a miracle. You are one of the very best… A true mentor of mine… Love you Marilyn with all our heart.

  7. Bill says:

    Marilyn, this is terribly heartbreaking. Hopefully you will get a reprieve for the pain. I am coming over to visit. Prayers for comfort. Love Bill
    ……Fear Not
    “The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid? Though an army encamps against me, my heart shall not fear; though war rise up against me, yet I will be confident.” -Psalm 27: 1, 3

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