Tuesday, June 3, 2008

"I have a friend . . . "

When I was first diagnosed with cancer, several well meaning friends offered to hook me up with other cancer survivors. "I have an uncle who beat colon cancer. Would you like to talk with him?" "My best friend is a six-year breast cancer survivor. I'm sure she'd love to talk with you."

I appreciated their offers, but I didn't want to talk with people with just any cancer. I wanted to connect with others with my rare blood disease, mantle cell lymphoma (MCL). I felt like I struck gold last year when my friend Reiko informed me, "My colleague Dave had the same thing." Not only did Dave have MCL, but he also had a quirky eye tumor, just like me. Considering that there are just 4,000 new cases of MCL diagnosed each year and less than 1% of thse cases involve the optic area, the odds are staggering that we rare birds would find one another through a mutual friend.

Around the same time, Newsweek columnist Jonathan Alter became the poster boy for MCL by writing a cover story for Newsweek Magazine. Dave and Jonathan communicated three valuable messages to me:

- You are not alone.
- The treatment is rough, but temporary.
- Many, like me, have beat down the disease.

Now that I'm six months post auto stem cell transplant, I've also become a go-to girl for blood cancers. (I must remember to add that to my resume.) It seems that not a week goes by without someone emailing or calling me to find out if it's OK to give my name to a newly diagnosed blood cancer patient.

A couple weeks ago, a friend in Connecticut called to tell me that one of her colleagues in NYC was just diagnosed with MCL. Again, the odds are slim that one individual would have two friends with this disease. I talked with her friend and then followed up with an email with links to my favorite MCL-related websites, listserves and blogs.

Last week, I received a call at 10:30 pm on a weekday night. Noone calls me at this hour. It was my friend Eleanor, the grandmother of my god-baby and an oncology nurse at a San Fernando Valley hospital. "I'm sorry to call you at this hour, but you've got to talk with the girlfriend of one of my patients. She went with her boyfriend for a consult at the City of Hope and I think she had the same doctor that you had when you first started out there."

I listened to the young woman's story. Her 22-year-old boyfriend was recently diagnosed with acute lymphocytic leukemia (ALL). His local oncologist recommended that he go to the City of Hope for a stem cell transplant. But instead of being filled with hope after the consultation at CoH, she was filled with hopelessness and confusion. Because of the negative tone of their consultation, she and her boyfriend's family were ready to close the door on the option of this life-saving procedure at the CoH.

The young man and his family and girlfriend did in fact see the same doctor that I initally did at CoH. I told her that this doctor was neither a bad physician nor a bad person, but acknowledged that her bedside manner launched me on a quest to find another doctor at CoH. I begged the young woman to give City of Hope another chance. I also shared information about the second opinion by mail system at MD Anderson. The young woman asked me if it would be OK if her boyfriend's mother gave me a call, and I told her that I was eager to talk with the mom.

That mother hasn't called me back, but I still hope that she will. I ask myself why I'm so eager (over-eager actually) to talk with this particular mom. I think I want to take away some of her pain. And I want to tell her that everything's going to be alright. But, unfortunately, I don't have the ability to take away anyone else's pain. And noone, not even a doctor, can guarantee that "everything's going to be alright."

If she does call me, I plan to listen hard with my head and my heart. And then I'll recall the three messages that sustained me during the first weeks after my diagnosis.

- You are not alone.
- The treatment is rough, but temporary.
- Many, like my friend Ann, have beat down the disease.

ONE YEAR AGO TODAY: Cancer Banter went to a used-car lot.

1 comment:

Ann said...


if I can help, just let me know. The young man's diagnosis sounds similar to mine and we all know how scary it is to be stuck out in the cancer wilderness.