Survival Rates

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Thank God there wasn't much in the way of an internet when I was initially diagnosed. I don't know how it might have changed my attitude if I'd been able to some serious research, if I'd been able to pull up survival rates at will.

(From The Leukemia & Lymphoma Society: the overall five-year survival rate for all patients with acute and chronic leukemia is 44 percent. However, when you look at the type of leukemia that I had -- acute myelogenous -- the five-year survival rate is only 14%.)

Or maybe I would have been fortunate enough to stumble across Stephen Jay Gould's The Median Isn't The Message, validating what I'd felt from the very early stages, that survival rates are a highly personal thing.

It is a natural question to ask. When Dr. Gorst was patiently explaining the disease to me in Lancaster, I reached out for something solid. What are my odds? Numbers are facts. They are concrete. You can lash yourself to them to help weather the storm.

I remember Dr. Gorst telling me that leukemia had an 80% survival rate. I did not push back. I never asked for clarification: eighty percent of what? Survival for how long? Is this for all leukemias, or my particular sub-type? He may not have actually even given me those numbers, based on research I've done since.

Dr. Collins gave me a different number, later, when I'd asked her the same question in the middle of my first round of chemotherapy. She gave it some thought. She paused before answering. I was young, and fit, and strong, but it had been weeks since the last of the chemotherapy, and my body had still not shaken it off. My marrow was not recovering.

"I'm going to be completely honest with you, Robert," she said. I want to think that she held my hand, but I doubt that she did. At least not then. Let's say that she came close to my bed and half-stood, half-rested against the edge.

"You are asking me what I think your chances are, right?"

I nodded. I'd recently received some demoral. It helped with my many fevers, but it also made everything feel fuzzy. I rubbed my face with my right hand, starting at my forehead, a slow swipe down to my chin, lingering over the bridge of my nose. I wasn't sure if I could feel anything.

"You might hear many different numbers," she continued. "There is always some amount of debate going on, some different way to spin the numbers. But the numbers, ultimately, are meaningless. It boils down to fairly straightforward math.

"Your chances are not 20% or 50% or even 80%. You either survive or you don't. Period. Today you are surviving. Yesterday you did the same thing. Every day that you continue to survive you have a one hundred percent chance of survival. Your odds, your personal chances of survival, are at 100%.

"Does that make sense? Does that help?"

I nodded again. I still couldn't feel my face, so I checked again to see if it was still there.

6 Comments

Just came by, to get a dose of RKB as it were, and read this story among others. This one is pretty powerful. As you may recall, I had my own brush with medical "science" and the numbers game. It is pretty scary.

Good writing. Keep it up.

I was on this site because a friend of mine whos only 13 was diagnosed with leukemia. I wasn't very close to this person but I new him becasue of where I once lived. My freind Hannah called me bawling and told me. She was very shocked she said. She wanted to know the chance of him living. She tried to stay positive but in the back of her mind she was thinking that her own dad died of cancer. She told me all of the people in her family or close freinds that had cancer never survived. My Uncle was recently diagnosed with prostate cancer and my Grandpa died of it. Were going to the Children's Hospital and buying him a teddy bear and some goodies. Everyone remember God loves you and LIVESTRONG!

Great website!

Our friend was recently diagnosed with leukemia at the age of 13. He went into the hospital yesterday very sick. Hannah called me up on the phone bawling. She told me Tony who I once lived by and hung out with was very sick. Either of us are really close to Tony but we still know him enough to care. Hannah was trying to stay positive as I told her she should. She told me that she had so many bad experiances with her freinds and family dieing including her dearly missed father who passed away from cancer. I have a Uncle who was rencently diagnosed with prostate cancer and a grandpa who died from it. We are going to go to the Children's Hospital and bring him a teddy bear a card with some goodies and a livestrong braclet. Remember God is with you and LIVESTRONG!

Great writing it's nice to have someone who actually is a survivor.

Kaylee,

Thanks for stopping by. Believe me, as somebody who spent more than a little time being very sick in the hospital, it's great to have friends stopping by now and then, regardless of whether or not we were ever super close.

It can be a long fight. And I'm sorry to hear about both yours and Hannah's losses.

But leukemia is definitely beatable. Your friend is young, and he has friends that care about him, and that can make a world of difference.

I still remember my mother's eyes shining with tears when the doctor handed over the report to her. She was pretending to be very happy. She never wanted me to know about my luekemia but I read my reports when she wasn't around and googled about CML (Chronic Myleod Luekemia)
It could have caught at an early stage but I was so stubborn to listen to anybody,never visited a doctor for my on/off fever and blocked chest with cough.At last when i had to visit the doctor,my WBC count was 84,000 which has to be in between 4000-10,000.
Now its been 2 years,still living with it and at the moment,it is on stage 4.
Hopefully ,I'll be cured because I fight for it evry day but just want to convey my message to all those colledge students who think like the way i use to think that they are very tough -At the moment I was diagnosed,I felt like a typical hindi movie drama of SRK but please,if you have any syptoms of any ailment,get proper treatment done in time otherwise you will regret later THE WAY I DO.
I started off with fever and ended up in cancer !!

Gunnee k hayer,God bless you.You a a very lucky person.the procedure is very difficult to go through.you are a very lucky person!

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A Few Notes

robert (now and then)
(hover to see RKB in 1990)
After running two marathons in October 2010 with Team in Training, I've decided to "slack off" with just the one marathon in 2011.

This year will be in memory of Siona Shah, an amazing young girl who spent the final third of her too-short life battling leukemia with courage, grace, humility, and smiles.

It will also be in memory of my step-grandmother, Ruth, who passed away on June 15th after a recurrence of Non-Hodgkin's Lymphoma.

I'd originally started using this site to tell my story -- roughly eight months of treatment in 1990, as well as the impact leukemia had on me in the years that followed. Much of that story is still available through the "Table of Contents" below (starting with my initial diagnosis while I was studying in England).

 - Robert K. Brown
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