A Good Meeting with Dr. Cook

There is a paradox called something like the "approach-avoidance" paradox. Have you ever been there?  It goes something like this: There is something that terrifies you, but you can't resist the urge to find out about it. Jill and I have just passed through such a situation. When we received the diagnosis telling us that my AML has relapsed, Dr. Waugh suggested that, along with beginning the current regimen of treatment I am on, we make an appointment with Dr. Cook at OHSU for another consultation. We assumed the purpose of the meeting was to reexamine the possibility of bone marrow transplant (BMT). 

If you have been following this blog, you may recall how I agonized over the decision about whether to proceed with BMT and how the Lord intervened and made the decision for me. (Please see my December 7, 2021 post,  The Big Day) Today we had a new consultation with Dr. Cook. To our relief, it was about more than BMT. Dr. Cook asked a few pertinent questions and then explained that the current treatment plan is exactly right for my situation. She did mention that she has directed her staff to revisit the BMT database at BeTheMatch.org, but she has not heard anything yet. 

More important to me and Jill is the rest of the information that she had for us. First, she said that, based on my most recent bone marrow biopsy (BMBx), they are not even sure whether this current leukemia is a relapse of the previous AML. She said it could be a completely different leukemia. The fact is that the genetic markers are different from the first leukemia. The previous KIT16 marker is not evident. There is an extra 10th chromosome. This may even be a new leukemia precipitated by the previous chemotherapy! 

She was able to answer some questions for us that had not been answered before, given that the focus of the oncology team has been to get the new treatment regimen underway. Here are some questions that she answered for us: 

  1. How will my blood counts change as I go through each cycle of the Azacitidine/Venetoclax treatment? 
  2. When will I have another bone marrow biopsy? 
  3. When will my platelets stabilize? 
  4. Do I need to be taking Acyclovir and Levoquin as well as Posaconazole? 
  5. What about EvuSheld, the monoclonal antibody drug to prevent Covid19?

In order, here are the answers: 

  1. I should experience similar changes in my blood counts to those I had after my previous chemotherapy rounds. My blood counts will decline to the point where I will need red blood cell (RBC) transfusions as well as platelets. My neutrophils will disappear, leaving me severely immunocompromised. Then the blood counts will increase back to something like normal before the next 28 day cycle begins. 
  2. I can expect a BMBx after the first or second 28 day cycle. I have an appointment with a Nurse Practitioner prior to my next cycle. Perhaps, that is when the decision will be made about the next BMBx. 
  3. My platelets will go up and down, just as they have in past chemotherapy cycles. 
  4. When my neutrophils get to a low level, I will need to be on Levoquin again. She was surprised I am not on Acyclovir now but happy I am on Posaconazole. 
  5. Whereas, I am in the zone for a new injection of EvuSheld, I should not have EvuSheld while my platelets are low, because of the risk of serious bleeding. I will connect with the oncology team about timing for that treatment.

Please understand that I have full confidence in Dr. Waugh. She has been madly managing my care, and we haven't really had time for a consultation. Dr. Cook simply had more time to provide these answers. 

Jill and I came away from the consultation with a better understanding of what to expect in the coming days. We also came away with more hope for the future. I don't know about Jill, but I was reminded once again that the only way we can live life is one day at a time. Jill shared a quote with me this morning that went something like this: "Live life as if you are healed." And that is our plan. 

In the meantime, we thank the Lord for each day, each moment, each breath. And there is nothing like expressing gratitude for what you have to bring you peace about what is to come. 

The Lord is at hand; 6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:5-7)

Thank you, Lord for being at hand. You are a good, good Father, and we love You


Comments

  1. DonalynnJuly 23, 2022 at 12:03 PM

    Amen and amen. Thank you for sharing so precisely all that you learned and how you will be moving forward. Take care and God bless you both.

    ReplyDelete

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