Reflections on the Week, by Libby

My Side Kick, Watson, and Me

It has been a productive week. Lots of prayers answered, lots of God’s Grace shining through.

I’m waiting to hear more about the potential donors and if they are willing, able etc. it should take 4 to 6 weeks to complete this process. Emory has activated 5 of the 20(!) matches. Please pray that there is a special someone out there that is willing to go through the bone marrow or stem cell retrieval process for a stranger. I have asked the Dr. Waller if I will get to communicate with this special person or if they will have to stay anonymous. Wouldn’t that be cool if I could talk with him or her or see them and tell them how grateful I am. Wouldn’t it be neat if they would share this adventure with me?….and better yet if I could meet the in person to thank them?! I have not yet fully decided to do the Allogeneic donor route since it is the most intense and dangerous process but so far it seems that it is probably the best bet for a durable cure.

I am heading to New York for the BDNY hotel conference and have an appointment, one more time, with Dr. Horwitz at Memorial Sloan Kettering (MSK) on Monday the 12th while I’m there. My business partner and friend Melissa is going with me to the appointment so that she can hear about the process first hand.

On the 29th, I have an appointment at my old stomping grounds, the Mayo Clinic in Rochester Minnesota to meet with Dr. Steve Ansell who is another oncologist specializing in TCell Lymphoma. Ugh… still hard to believe I really have this!!!!

Once I have made these rounds, I should have more than a sufficient consensus about what I should do and be able to make a decision on the bone marrow transplant adventure and not look back. Once the details are figured out, I plan to go forth with all of my heart and soul! The Good Lord will be holding my hand and I will feel all of you cheering on the sidelines!!

My prayer is that I will have complete clarity that Emory is the best place for me to have the 6-9 month procedure so that I will be close to home. I met with Dr. Waller at Emory who is head of Allogeneic transplants last week and he is brilliant and kind and I really liked him a lot. Compared to MDAnderson, MSK and Mayo, I have a few bones to pick with Emory about their laborious, indirect communication process between doctors and with patients, but I do love the doctors that I have. Dr. Lechowicz and Dr. Waller are amazing people as well as incredible doctors. Also, I have a great internist Sandra Fryhofer that has followed me since the beginning diagnosis. She came with me to my first oncology appointment and sat with me and my family! She even brought my huge medical history chart and filled out all of the pages and pages on my behalf. She stayed for the appointment and met my oncologist as part of the family. She has stayed in touch with me all along by text and email.  I am blessed. I am grateful for her brilliant mind, compassion and friendship.

I can’t say enough about Dr. Oki my former Oncologist at MD Anderson. Although he left Houston and moved to California to do research and clinical trials, he has continued to correspond with me as a confidant and counselor and has made calls about Cart T programs, talked with Dr. Nieto, Dr. Horwitz and Dr. Ansell on my behalf. I am so appreciative for this kind, smart man who is so responsive and wise.

Again, I have more support than I deserve. I am continuing to learn so much from so many brilliant doctors. Mainly, however, I am learning a lot about raw compassion and remarkable people going the extra mile for me. I am humbled. I plan to try and pay it forward!

Always love:)

2 thoughts on “Reflections on the Week, by Libby

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