Trying To Catch My Breath

What a difference a year makes. A year ago, Alan and I had just returned from a trip to Utah with his college friends and their spouses, celebrating their 60th birthdays. I was in Utah when I wrote a love letter to Alan on his birthday on this blog. At that time, the only symptoms I was experiencing were from the chemo. I could count on three horrible days on chemo and one day afterwards when I was totally exhausted, but then had ten good days to enjoy, with each day getting better. While the chemo was cumulative so that it took longer and longer to recover, I did recover each time. In Utah, that meant hiking, going into town, cooking, going out to dinner and fully enjoying ourselves. One year later, and I cannot imagine being able to travel to Utah, let alone do all the things we did last year. Now, I am experiencing bad symptoms from the cancer and am not able to do much other than hunker down and hope the immunotherapy works. I cannot imagine hiking. I cannot imagine going out to dinner. I can barely do yoga.

As I wrote in my last post, my belly is huge. It looks like I am nine months pregnant or more and is hard as a rock. My belly button is now an outie. The size is the result of two things – some liquid, but mostly a spiderweb of lympathic tissue surrounding my digestive system. This is apparently a common occurrence with advanced stage stomach cancer (and lung cancer). While my doctors have tried to drain the fluid to give me some relief, there is little they can get because most of it is trapped in little pockets of tissue and not worth poking me to drain and then opening me up for potential infection. My belly distends not only as far out as it can, but to the sides.  It causes constant discomfort, constant pressure and constant shortness of breath as it presses on my diaphragm. My breathing is mostly labored because of the pressure on my diaphragm. Some days are better than others, but there are days I can barely carry on a conversation.  No matter what, I sound breathless when I talk.  It is not easy to catch my breath.

There is no minute of any day where I am comfortable. The best I can do is distract myself. As a result, over the last week I have read one novel a day. I-books is getting a lot of business from me.

Nausea arrives every day, sometimes just at night and sometimes for most of the day. Along with the nausea has come vomiting, which, while not an every day occurrence, is occurring. Last night just as I got into the couch where I sleep sitting up, I had an overwhelming wave of nausea and immediately was sick. Not fun. It also is worrisome because over the past couple of weeks, I have had less and less appetite. I definitely have lost weight. My arms are scary skinny, as is my chest. Yet, I cannot eat too much at a time or I get acid reflux or get sick. Plus, very little appeals to me. I am someone who always loved good food.  Going to dinner or making a nice dinner was a big part of our social life. That is not happening now. I can eat very little solid food, with my best meal at breakfast where I can still get down toast and eggs and feta cheese. The rest of the day it is a struggle to eat. I have not had solid food for dinner for the last ten days, instead drinking Ensure or smoothies. The thought of chicken, fish, rice, or potatoes, turns my stomach. Thank god for smoothies and ice cream bars. For some reason, I can always eat an ice cream bar. I know I have to keep up my strength and so I force myself to eat even when I am not in the mood. Nothing much tastes good. Yesterday, I thought I wanted macaroni and cheese, but one bite made me super nauseated. I did not eat it and had a smoothie instead. It is also a challenge to drink water but I have to do better.

The discomfort gets worse as the day goes on. I am pretty much worthless from late afternoon on. On Alan’s birthday, which was Sunday, Alex and he cooked the birthday dinner and ate it without me while I had an Ensure sitting on the couch in my library. I did, however, have a gift for Alan – a new yoga mat I picked up the day before. I also feel like a slug – I am hardly moving around. I decided yesterday that no matter what, if I woke up okay this morning, I would go to yoga. I did. It was hard. I had to modify everything and at the end of the class the teacher and other students who know me were both hugging me and crying.  But, I did it, even with a lot of modifications, and I feel better that I moved my body today.

Its hard to say how much of this predated my treatment and how much is from the treatment. There is no question that I was experiencing many of the symptoms before the treatment last Tuesday. The treatment, however, has probably worsened them, including the nausea, vomiting, shortness of breath, coughing and lack of appetite, all of which are common side effects. If I think about it, and I try not to focus on this, I am miserable 24 hours/seven days a week right now.

The effect of this on my emotional state is not surprising. There have been a lot of tears, including between Alan and I, and in front my kids. I cry easily in front of friends, who cry with me. Alan and I have had a number of tearful conversations about my current state and the love we have so luckily shared these past 34 years (33 years of marriage and one year together before then.)  We have been lucky, and are still each other’s best friends, but that makes this that much harder. The tears I have cried are tears of frustration, tears of grieving for the way I want to live my life but cannot right now, tears for the stress this is causing my family and friends, tears for the life I may never have. Because there is not one minute of any day where I feel good, I have to try really hard not to give up. I will not, but this is certainly an immense challenge.

On Sunday, Alan sent an e-mail to his ski and college friends about me that I was not supposed to see. One of his friends, however, replied to Alan and copied me. It broke my heart.  All throughout the e-mail was nothing but his love of me and the suffering he is going through watching me suffer.  While reporting on my current state, he reminded them of the grim statistics for this type of cancer, statistics I refuse to let rule my life. He told them that we both had been very teary eyed the last couple of weeks, but despite that, I am fighting on and we have not lost hope. That is true, but the fight right now is as hard as it could be and the misery I feel is hard to bear. I continue to be blessed by the love and support of my family and friends.  Without them, I am not sure how I would be doing. For them, I will not give up.


7 thoughts on “Trying To Catch My Breath

  1. Karen Peters says:

    Marilyn, I feel so bad for you. You are a FIGHTER and I wish that there was something I could do to take your suffering away.

  2. Maud Gosse says:

    Just know my ❤️ Is with you as you continue this difficult journey which makes me so sad my dear friend and I’m praying the new treatment soon kicks in……love,peace and hope xxxxxxooo

  3. Karen Hebda says:

    Marilyn, you continue to be a marvel of strength and resiliency….the fact that you can put your thoughts down in your blog while going through so much suffering is nearly impossible to comprehend. You are heroic in you stamina and continued positivity. You do not deserve this, and I am angry at the cancer and the inability to GET IT GONE! I pray for a remission…..I’m sending you my love, thoughts and prayers all through the day today….stay strong…..this disease does not define you, I know that, by your fighting spirit! I love you so much, dear friend!

  4. Kathleen Dib says:

    Sweet Marilyn, I was so happy to see you on Wed! I have to admit it was hard to get through the invocation without being choked up.
    Your bravery, determination, and fight is a true testament of who you are; a beautiful warrior woman, an inspiration to us all! I truly don’t know how you do it.
    I absolutely love your visualization practices…go get them Pacman! Turbo kick those cells to hell! I’m praying – we’re all praying that this new protocol will give you some relief . I visualize you’re breathing with ease and enjoying a meal.
    Marilyn You are truly amazing and loved dearly! You are always in our thoughts & prayers. I know your Karma & Shala Family practices in dedication to you. I know it’s so hard but please continue to keep your hopes positive!
    Tons of Love and Hugs!

  5. Tricia Moakler says:

    Marilyn, my heart aches as I read your words. You do not deserve this. I echo Karens’ thoughts as I marvel you are able to write so eloquently at such a difficult time. I admire your spirit and strength. Please know that I and all your friends are praying for you. Love, hugs and kisses. Tricia

  6. Maud Gosse says:

    You are my inspiration Dearest Marilyn….praying you are feeling better….sending lots of love and healing thoughts.❤️❤️❤️

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