Disengaging for a bit

Sometimes, it is hard to see this journey as an adventure. I went into chemo yesterday, and I asked the nurse to check my CEA (my tumor marker). I saw her to go the computer near the area where I was sitting, type some things in, and walk away.

My instincts felt that wasn’t good, but I tried to push away those feelings with logic. “Maybe that isn’t a computer she can use to check the numbers.” Which I know isn’t true.

She returned to hook up another bag of chemo to my line.

“Did you find my CEA?” I asked her.

“Oh, I need to print it out. I couldn’t print it from the computer I used,” she said, keeping strangely busy with her work.

“It doesn’t show on the screen?” I asked her. “I don’t need a printout. Just the number. Did you see the number?”

“I don’t remember it.”

“Can you check again now?”

“It is up a little.”

“A little. How much is a little?”

“It is 160.”

“That’s more than a little. That is more than double my last number.”

“I know. I’m sorry.”

“If the chemo isn’t working, maybe I can just skip today.”

“You can’t. You need this treatment, then get your CT scan next week. You never know. It might be stable.”

“A CEA that doubles does not indicate stable.”

We were quiet from there. This is hard.

Two different religious people came to visit me that session, the first time in the year that I’ve been at Dana Farber. They were a nice distraction and listened to me so well that I actually felt entertaining. One of them even asked if he could use my words in his sermon on Sunday. Then I slept.

It is a day later and I still want to escape this whole thing. I spent the day reading and futzing around on the computer. The kids came home from school, and they played around me.

Then, the younger one asked me to help him build a garage out of blocks. I had been in my all-day habit of doing nothing and it was hard to step out of that, so I told him that I would watch him. He moved closer to me and sat on the floor, quietly building and periodically saying, “Look, Mama! Watch this!”

While he was building and I was escaping into my own world, it occurred to me that, now more than ever, rather than escape, which I dearly, dearly want to do, I need to do the complete opposite. I need to engage even more.

Man, I never thought it would be this difficult to just live life. Thank you for being there, for helping to carry me, especially when times are hard.

Love,

Marie

8 thoughts on “Disengaging for a bit

  1. Marie, you are sent by God to lift us all. I am so sorry you have to endure this horrible battle, but know that you are the inspiration and light in so many lives. You don’t really know me, but you have touched my soul. Fight on, Sister, and know that my prayers are always with you.

  2. Oh Marie, I so understand. I’m waiting right now for my CEA results from this morning. It’s been slowly climbing again. I also understand completely the strong desire to just rest and escape from reality when we should be fully engaged in every tiny thing around us. It’s good to know we’re not alone in these feelings. Hang in and God Bless!

  3. Somehow I missed this last week…I love you. I’m praying for you. You are a blessing to me and everyone you touch. Praying for engagement, energy, healing.

    • Thanks, Denise! I’m miraculously moving through this – I have a CT scan this week and get the results next week, but feeling better each day so that is good. Thank you for your prayers, and I pray for you as well. Lots of love!

  4. Dear Marie:

    When I was in the throws of treatment, for some reason, my CEA number never changed. It was never elevated, even when I was stage 4. Being a data person, I wanted the numbers. It was my scorecard.

    Thinking back, I now wonder if not having that data was a blessing. I went in to each treatment knowing what I had to do. I just pushed myself and by not having the yardstick I never thought about “is it time to stop or pull back”.

    I can only imagine the anxiety of waiting to hear the report card. Focusing on your own health and well being requires enough of your energy, but adding this to the list complicates it more.

    Gwen and I think of you every day and we send our thought and prayers your way. The power of the universe unites us and I hope you feel our energy within you.

    • Roger, I think you are right! They recommended that we test the CEA every two months, but I like to have it done every month. I was so proud of myself that, this time, I didn’t check for two whole months and then it was high! Ugh. Though, I’ve moved into the space of “it is what it is.” Thankfully, that is the good thing about data (for me). It has a shock value but eventually I get to, “Okay, that is the data. Now what can I do about it?”

      Thanks so much for being there, you and Gwen, always. You are a huge support for me in this, and also a source of strength.

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