Wednesday, June 22, 2011

The Human Touch: Connecting with Stem Cell Transplant Survivors

My friend Sue recently contacted me and said a woman she knew had been diagnosed with multiple myeloma  and was facing a stem cell transplant. She knew that I had survived a similar transplant three years ago as part of a lengthy battle against my lymphoma, another type of blood cancer.
She asked for suggestions for how she could help both the patient and her husband. It's a question I commonly get: how to help a cancer patient?  And this one had added specificity: what if the patient is also facing a stem cell transplant?I gave her my two cents on a few things she could do, routine things like offering to bring them a meal, help with laundry, do their grocery shopping. I also said what they might need depends on the stage of the treatment.

I told Sue she could tell her friend that medicine is making great strides with the stem cell program. A study this week, discussed in the myeloma treatment website Cure Talk, reports promising results for patients who undergo transplants.
There are plenty of studies that are encouraging to transplant candidates. But what I found most valuable -- and what I emphasized to my friend -- was the importance of speaking to survivors.
I found them by word of mouth. All my friends and family members were shocked, as was I, that a transplant was needed to continue to fight my cancer. I had never known anyone who had undergone one. But once news got around, I began to hear from friends who knew someone who had survived a bone marrow AKA stem cell transplant. 
I asked them if they would contact each of the survivors, three in all, to see if they would mind talking to me. I had lengthy phone conversations with two men and a woman, total strangers, about what I might expect.
After those calls, I was still apprehensive about a process that can take four weeks in the hospital and is designed to bring you close to death. But I was also encouraged. 
These were people who had lived through the ordeal and had come out the other side OK. 
I advised Sue to encourage her friend to seek out others who have had the procedure. I offered my services if she wants to hear my story.  I recommended the friend ask her doctor or nurse for other ideas.
Online resources are available to match transplant patients with survivors. The Bone Marrow Transplant Support group  holds three online chats a week so patients can have questions answered. And the Leukemia and Lymphoma Society
 arranges telephone calls  for patients to talk with survivors who have faced the same type of cancer, including myeloma.
The day in September 2008 that I checked into UCLA hospital to begin the transplant procedure, a pretty, energetic young lady swept into my room. She said she was returning a book to the unit and had asked if there were any new patients on the ward. She said she was a cancer survivor who had a transplant there years ago.  She told me it was not easy. “I had every bad complication,” she said.
But today, she said, beaming, she is doing great. I smiled weakly back at her from my hospital bed, wearing a cotton cap over my bald head. She ran her hands through her thick, long hair. “And this is my own hair!”
That visit from a bubbly survivor was worth more than any info I could find in an online study. It was the personification of hope.

1 comment:

  1. Yes in the disability condition, human touch is more expected by disabled people.They search for the helping hands around them.