Dear Friends and Family,
The last three weeks have been glorious.
Quite simply, we have watched the leaves change while waiting for our lives to change, as well.
Yesterday, Wednesday, October 13, was Decision Day.
Yesterday Nancy and I had an hour-and-a-half meeting with the transplant team at the University of Utah. After our meeting had ended and as we were walking down the hall toward the fifth floor elevator, I took Nancy’s hand in mine after looking at her face, “You look a little blue, darlin’. What did you think?”
Nancy squeezed back tightly. “I’m still happy with our decision. I just wish I could’ve closed my ears after the first twenty minutes.”
I couldn’t have agreed any more with Nancy. The first twenty minutes of our meeting were great. Dr. Tsai, Dr. Peterson’s partner on the transplant team, had expertly explained his views on the mini versus full transplant dilemma. He was clear, concise, and straightforward. Dr. Tsai had been the best yet at explaining both the pros and the cons. Those twenty minutes were just what we needed to finally make our choice.
After that?
The meeting was a complete nightmare. I should have brought earplugs for Nancy. She was forced to sit quietly and listen about the seemingly endless list of awful things that might happen to her during and after her transplant.
We learned the side effects of each poison medicine Nancy will receive.
We explored how and why any of her organs can fail.
We discussed scientifically why the next thirty, or even one hundred, days might be a living hell.
The descriptions of potential side effects went on and on.
As a medical professional, I understand the concept of informed consent.
Simply, we were not prepared for “Sign here, Nancy, that you may live. But it might be hell. Or, as I’ve made you acutely aware, sign below that you fully realize that if you don’t experience a living hell, you might simply die.”
I was more than a little surprised that Dr. Tsai didn’t ask, “How much do you want to hear, Nancy?” All along, Nancy has only wanted information when she was ready. Her beautiful face is so easy to read. Couldn’t Dr. Tsai see the look in her eyes? Every line on her face said, “Not now.”
We had been sent a consent form to review before the meeting. It was twenty-six single-spaced pages. Twenty-six pages. I’d read every line, crying by the end of each section. When I gave Nancy the option of hearing a three-word summary, she gladly agreed. She quickly signed the last page; not reading a word, as I chose my three words carefully, “Transplants are dangerous.”
She was able to quip, “Let me guess. It says I have a 50% chance of dying. And if I don’t die, everything that can go wrong will go wrong with any part of my body at any time.”
(Maybe she had read the consent form.)
All I could think about were two things: Why hadn’t I brought earplugs for her? And how can I save her from the heartache I am feeling?
Jayna, who had also attended the meeting, looked at Nancy and me. As usual, she initiated the positive words we needed for the moment. “I think it’s amazing that Mom will have a new blood type,” she said as she placed a sweet kiss on Nancy’s cheek. “You’ll be A-positive. And the nurse told me you’ll get the color of the donor’s hair. You’ll have more fun as a blonde, don’t you think, Mommer?”
Nancy whispered, “I’ll be glad just to have hair again.”
“Maybe we should think of this hospitalization as a test, Nancy. And Dr. Tsai said you will assume the donor’s A-positive blood type,” I added. I took a pen out of my pocket as well as the card Dr. Tsai had given me. I wrote the letter A and next to it the symbol + on the back of the card for Nancy and Jayna to see.
“Can’t do any better than an A-plus.”
(My one-liners are nowhere near as funny as Jayna’s or Nancy’s.)
“How ‘bout you, Jayna? Comfortable with Mom’s decision?”
“Totally, Dadder. I was leaning in that direction all along. Dr. Tsai merely sealed the deal. And Jaret told me last night he felt the same way. He’s confident you’re going to sail through this, Mommer. Me, too.”
Nancy turned toward me, “Winnie, your turn. Did we make the right decision?”
“I . . .”
I was saved by the opening of the elevator door, as a family of four and a family of three entered the cab, squeezing Nancy, Jayna, and me to the back. Nancy raised her index finger to her lips. No need to answer my question, her gesture told me. She knew my answer anyway.
Nancy squeezed my hand again and winked. The father next to me smiled.
Once again, our family found merriment in a dark time.
Summary: Even though only Nancy’s vote counted, our family unanimously decided that she should have the full (traditional) transplant. I will send details of the next part of our journey later this evening when everyone is in bed.
Love,
Winnie