Thursday, March 22, 2007

Striking Gold

Today I reconnected with an old friend, Reiko. I told her about my diagnosis and upcoming treatment and she remarked, "That sounds like what my friend and colleague Dave went through." As she described his treatment, I was certain that her colleague and I had more in common than a mutual friend.

Thirty minutes later I spoke with Dave and learned that he too was diagnosed with mantle cell lymphoma (MCL) and went through a similar chemo treatment that culminated in a stem cell transplant at the City of Hope.

Dave is in the process of writing his "saga," which he graciously emailed to me as soon as he returned home. Opening the file and reading Dave's compelling story was like hitting the mother lode. As it turns out, Dave and I are both the rarest of rare birds. Mantle cell lymphoma is a relatively rare form of cancer, making up 4 to 6% of non-Hodgkins lymphoma cases. Even rarer is when the MCL tumor develops in the eye area, as both of ours did.

Both of us developed a chronic, untreatable skin rash two years before our MCL diagnosis.

Dave's story is filled with warmth, humor, nitty-gritty descriptions and hope. During his in-patient treatments, this athletic 64-year-old man became known for walking the ward with his omnipresent "dance partner" (IV bag) for more than an hour each day. But, in spite of the exercise, he managed to gain ten pounds because of the "room service at Hotel Hope."

Below are the first two paragraphs of his story:

"Monday morning, October 24, 2005… Relief workers struggle to help 3 million displaced survivors of the Pakistan earthquake that killed an estimated 80,000 people… The Simpsons aired on Arab TV… Former Russian KGB agent Alexander Litvinenko is poisoned by ingesting polonium 210, a radioactive isotope, after accusing Russian President Vladimir Putin of orchestrating Russian reporter Anna Politkovskaya’s murder.

From the mundane to the morbid; from the arcane to the absurd, intrigue is all around us. Usually I’m very sensitive to the world's suffering and foibles. But, today I have been diagnosed with Mantle Cell Lymphoma, (MCL)… Perspective blurs."


Paula Johnson said...

Hey! Someone who REALLY GETS IT. What a wonderful little cosmic gift for you, Susan. If Dave's local, I hope to meet him on Sunday.

Carolyn H. said...

Wow! What a great resource. I'm so glad you found this guy. And it is so nice that he is on the other side of the treatment. I hope that is a little encouraging for you. No doubt he has "war stories", but you already know it will be challenging. Perhaps he can help you maintain perspective. We think about you every day and love your joyful spirit. You are very special.

Karen said...

Amazing! What a comfort to be able to speak to someone who's gone through it already. I'm so glad you found him. :-) How's Dave doing now?

Troy said...

Hi Susan. Got an email from our friend Joe about you being the rarest of rare birds! So glad you've found someone who has experienced this rare cancer and is going through the same treatment. It's like a parent testing out their skills on the older kid first.

Ron and I are making plans to be there on Sunday.

Your spirit shines through this blog. Thank you for sharing it.

Piper Robert said...

Hey, Sis. I'm glad you have that connection with Dave. I was really hoping someone would come on the scene 'cause I know you still have lots of questions.

I missed your post on food, so I hope this isn't too late. Do you know what my favorite dinner of all time is? How about going back in time to Grandma's in mid July, maybe 1963, and having a fried chicken dinner with mashed potatoes and country gravy (real gravy, like Grandma made), creamed tomatoes, green beans fresh from her garden, corn on the cob and Kathleen Allen's cabbage rolls with homemade bread. Of course, big tall glasses of sweet iced tea that only our Grandma could make. I loved how Grandma would sit on the edge of her seat, "at the ready", just in case we needed anything. After everyone was totally stuffed, remember how Grandma would say, " bake cookies?" Those were the best of times!!! Especially when you slugged James in the mouth. You've always been a fighter and a winner!!! Love ya.

Susan Carrier said...

Ahhh, my brother brings back some of the best memories of my childhood.

I slugged my younger brother, James?! I'm certain it must have been self defense.

Piper Robert said...

I'll refresh your memory. You were 10 and James, 6. We're at Grandma's and it's a typical Saturday morning after breakfast. James blind sided you. Common brother/sister stuff. He dragged you across the dining room floor by your hair, but you were swinging at him wildly to break his grip. Once you regained your feet, you went into attack mode. James ran away crying, bloody, and defeated. Familiar scenario? Sure, you got blind sided again, but cancer doesn't have a chance. You're already in attack mode.

Janet Aird said...

You have a GREAT brother.