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Posted 2020-08-11T22:59:12Z

The Waiting Game

Hi everyone,

I know a lot of you have been waiting to hear how the treatments at Anatara are going. Well, me too. The frustrating truth is that we probably won't know if all this effort has been successful until about November.

The bone marrow biopsy showed 'only' 3% cancer cells in my marrow, essentially the same as March and much lower than Kaiser expected. And, for the first 5 or 6 weeks, the cancer blasts in my blood were going down consistently every week by 1-5 points. Then, about 2 weeks ago they spiked quite high. My Anatara doctor is quite sure this is because all the anti-cancer medicine they have been pouring into my veins have dislodged these cancer cells into my blood stream, and they are being counted by the blood tests. Sounds reasonable to me, but it was a lot more fun seeing the numbers go down every week and thumbing my nose a bit at Kaiser, who had essentially written me off. 

I start a new stem cell treatment this week which will go through about October. So, hopefully by November, we will have eliminated the march towards AML as well as much of the original two diseases. If we can't get rid of the MDS and myelofibrosis, then I'll just end up back where I started.

For two months, my schedule was insane. I drove into the city by 9 am every day for 7 hour IVs, four days a week. The fifth day was generally something at Kaiser, like a blood transfusion. Meanwhile, normal household chores like cooking, laundry, putting out the garbage, feeding the cat and cleaning the litter box didn't go away. I was beyond exhausted. As my psychologist pointed out, "You're trying to save your life and manage a normal adult life all by yourself." Yup. This week, my schedule begins to be significantly reduced (hence sitting down to write an update). I only have to drive in once a week for August and probably less than that in September and October. 

Since I imagine that the next 3 months will be an emotional roller coaster watching the blood results, I probably won't post much. Whatever I write could be easily out of date the next week. But, please don't stop calling and visiting. I have a large deck made for social distancing.

Love,

Joanne

 

 

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Comments (11)

  • JON C STINE
    JON C STINE

    Joanne, thanks for the news. And my God, what a grind. You're so strong. We have been attempting to teach our cat to help out around the house -- clean the litter box, perhaps a few loads of laundry. Not going all that well -- an issue of thumbs, for instance. But she sure knows how to comfort and love. And I certainly hope yours does, too. This purr's for you. Love from the Rain Forest in Portland -- Jon

    2 months ago · Reply
    • Joanne Bethlahmy
      Joanne Bethlahmy

      🤣

      2 months ago · Reply
  • Holly Hurst
    Holly Hurst

    Joanne Mike and I are glad to hear your update. I am hoping to pop up to the Bay Area for a quick trip in a few weeks and would love to see you if you are felling up to it. Praying for great results and healing.

    2 months ago · Reply
  • Kevin Woo
    Kevin Woo

    A fearless fighter standing in nobody’s shadow - Kudos from Pismo.

    2 months ago · Reply
  • Jo Lynn Lambert
    Jo Lynn Lambert

    Love you, Joanne! I'm glad August will be a little less intense. Keep the faith.

    2 months ago · Reply
  • Mary Krasn
    Mary Krasn

    We need you here in L.A. for Thanksgiving (also known as Tofurkey Day if you are me!) It would be wonderful to see you then....praying for you -- you are an inspiration!

    2 months ago · Reply
  • Victor Koman
    Victor Koman

    Joanne — I wish you all the best in the coming months. We're all sending you positivity from our own COVID19 Sequestervilles. Wish I could hire you a butler to take care of all those quotidian tasks so that you can concentrate on wellness. In the words of Henry Gibson, "Keep a-goin'."

    2 months ago · Reply
  • Mark Nassutti
    Mark Nassutti

    Hi Joanne, just learned of your situation and want to wish you the best. I admire your balanced approach (left brain/right brain), it will doubtless continue to serve you well. Hugs from Seattle!

    2 months ago · Reply
  • Sally M Williams
    Sally M Williams

    Hello, Joanne -- I'm so sorry that your disease has become more complex. Though it sounds like the new treatments may be the solution. I am praying that will be the case. You've been through an unbelievably grueling experience and I admire your courage and spunk in the face of such a challenging situation. Will be thinking of you and wishing the best. Sally

    2 months ago · Reply
  • Jill Anderson
    Jill Anderson

    Hello Joanne, just wanted to let you know I am thinking of you and sending positive vibes and prayers. I do hope to hear from you soon. Jill

    25 days ago · Reply
  • Victor Koman
    Victor Koman

    Joanne — Now that it's autumn and the weather should begin cooling down, I hope all is well with you and that you get some positive news soon. Thinking of you. —Victor

    25 days ago · Reply