Saturday, April 18, 2015

Tiffany, my angel


I try to live every day of my life journey in gratitude and love. I am especially grateful for special people in my life who are wise beyond their years and have sometimes unexpectedly taught me valuable life lessons. I am grateful for those who have made my life worth living, and those who make my life easier and more joyful. I like to think of these special people as the angels in my life.

One of my angels is Tiffany. She is the cousin of my daughter-in-law Elizabeth. This wise and witty young woman had a liver transplant when she was 18 and then less than a decade later her liver started failing her. She underwent numerous bouts of unsuccessful chemotherapy and medical treatments for several years.

At our family Thanksgiving holiday in Corpus Christy, Texas, she announced that she “had enough of being picked at and prodded and infused with chemicals.” She said she had done all that she could do and had resigned herself to THE reality. In her witty manner Tiffany explained that she had directed her doctor to give her plenty of morphine when the time was right to take her to “Marguarita-Land.” She also announced that she was in the middle of planning a “bad-ass” celebration party of life and all things good that was taking place at the beginning of January. We were all going to eat and dance ourselves silly. We all started chanting, “Party! Party! Party!” Tiffany burst out laughing! To most families this might sound inappropriate, but we loved her dearly and we knew that each of us surrounding her at the table would also not be leaving this earth alive. We also knew that being inappropriate was sometimes appropriate.

I had just been diagnosed with leukemia three months before and was given a poor prognosis…

About 3 a.m., hours after everyone had gone to sleep, Tiffany and I tiptoed into the kitchen to sneak a piece of pie and surprised each other. We talked well into the morning. I was 57 when I was diagnosed. I had lived a great life. I was married to a man who was not only my husband since I was 19, but also my best friend and someone I was still crazy about. I had children, grandchildren, and several careers. I was working my way through the reality of accepting was is and accepting what is not.

Tiffany was only 28. My heart ached for her.

She said that she had lost some friends along her journey with cancer and some friends unexpectedly surfaced. She said that she now understands that when her friends stress about petty nonsense, it wasn’t petty nonsense to them. It was their life and it was okay. Tiffany came to a place where she realized the rest of the world did not revolve around her illness. She was not afraid, but she was thankful for modern medicine and morphine to eliminate the suffering. She helped me immensely that night – my wise and courageous little angel.

Tiffany passed before Christmas that year. She was surrounded by most of her family. Everyone was crying at her bedside, when she suddenly woke up. Apparently, she had not been given enough morphine. She saw everyone crying and proclaimed, “Why are you crying? I ain’t dead yet!” The room filled with laughter. And then quietly she passed smiling. Having the last word was always her thing.

We had the party in January, as she instructed, and ate, danced, hugged each other and laughed. We celebrated Tiffany. It was good.

She has been with me my entire journey. I carry her in my heart. Thank you MaMa BeBe for your daughter. She gives me great comfort.


Thursday, April 16, 2015

Patient Advocacy

Well, it has been a busy patient advocacy time for me lately. I was on a panel with two researchers/physicians for the private screening of the PBS documentary "The Emperor of All Maladies" sponsored by the Leukemia & Lymphoma Society.


Adrienne Briggs, MD, Arizona Oncology; Raoul Tibes, MD, PhD, Mayo Clinic; 
La Verne Abe Harris, PhD, patient advocate

I also participated in a panel discussion on living well at the Tempe (AZ) Town Hall Meeting for CLL/SLL patients and caregivers. Here is my interview (10 minutes) with Andrew Schorr of Patients Power.
http://www.patientpower.info/video/dr-la-verne-abe-harris-i-live-in-the-here-and-now/?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=CLL-2015-0014-02&utm_content=efc19eaf01

I recently returned from a trip to the National Institutes of Health. Good news! I am still in clinical complete remission. My white blood count is now a little over 7,000, which is in the normal range. I am enjoying this beautiful moment.