great expectations

prayer flag at the Amitabha Stupa

 

I have felt lost to hope many times during this journey with my mother.  Perhaps I have “known too much” as an oncology nurse to get easily swept away, or more likely I’m just not wired well in the optimism department. But there is magic afoot, and I feel it in my transforming and evolving (even if sometimes elusive) hope.

I may not always be upbeat about my mom’s cancer (and anyway, she has that covered very well on her own), but I have operated under some basic assumptions.  At the time of her disease progression in the spring, I truly believed she would get a bone marrow transplant. I worked as a BMT nurse for nearly 5 years, and I remember the faces of the patients I cared for. Many were decades older, and exponentially sicker. I never thought much about the reality that many do not make it to transplant, and even after her failed first stem cell harvest, I never acknowledged my mother could be one of them.

In the last week, the direction has shifted from desperately seeking stem cells to facing acute renal failure.  She is still undergoing testing, but this much is clear: she has worsening lymphoma that is obstructing her kidneys. In light of her poorly-functioning kidneys, she is neither a stem cell nor a drug study candidate. 

And so, you may ask, where do we go from here?

Home.

We still have talking and mulling to do, but Mom’s heart is calling her back to Phoenix.  MD Anderson is a tremendous institution, but if the shift is away from curative therapy to disease control and symptom palliation,we believe home is the place for her to be.  She may get some more chemo here first, plus the kidneys really need to start working better– but we want to get her home as soon as possible. 

Tonight, Mom was moved from the stem cell unit up to the lymphoma floor tonight– a symbolic transfer as well as a geographic one. Bone marrow transplant patients stick out at MD Anderson (the mask and gloves give them away). Mom was the odd-woman-out on the stem cell floor.  All the nurses gave her a hard time for walking around the unit without her mask on, even though her white blood counts are excellent and its not necessary. The blow of moving away from the thing that could cure her cancer hits me from time to time, but for the most part, I feel hope. 

 Hope that she will heal in the peace that surrounds her at home. 

 Hope that she may get a remission and stay there for however long we can make it last. 

I even have hope that she might get so much better that down the road stem cell can be considered again. 

We came to Texas with our hearts full of hope, and they still are.  Our expectations have shifted, but our dreams are still alive.

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3 thoughts on “great expectations

  1. Barbara Snow

    Darling Katie and Nelle,
    I have hope too, even though my heart is breaking a little. Katie – thank you for your beautiful postings and insights into this journey.
    Much love,
    barb

    Reply
  2. LeVine Olson

    DPear Katie & Janelle, We did not like to hear the news from Tx.And want you to know that all are hearts are filled with love for you all. Please,keep us posted as to the plans in the days ahead. Will wait to call later. From Uncle LeVine
    & Auntie Patsy

    Reply
  3. LeVine Olson

    We did not like the news that came from Tx.And want you to know that we are thinking of all & wishing that we were there to give you a helping hand .But, will just have to keep are many thougths and prayers to you ,dear Janelle . Hope to talk to you soon . Our Love to you dear Janelle.
    from Uncle LaVine & Auntie Patsy.

    Reply

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