Too Much About Leukemia

I listened to the Leukemia & Lymphoma Society's telephone education program yesterday entitled "Acute Myelogenous Leukemia: Understanding Current and Emerging Therapies." Dr. Appelbaum of the Fred Hutchinson Cancer Research Center was the featured speaker. Listeners were able to ask questions at the end of his remarks.

What I learned from the program is that I know too much about leukemia. I've been reluctantly studying it for over two and a half years and have become something of a lay expert. I say this because none of the information about leukemia therapies was new to me. I hung up during the question and answer session because the questions seemed so basic.

Sadly, not much new has emerged in the time I've been a student of leukemia. The initial treatment protocol remains more or less the same. It's clear that researchers seek better outcome predictability so that patients and their doctors can make better choices about when to go the transplant route. Right now, if you fall into the intermediate risk category (I did), it's a crap shoot as to whether you should do chemo alone or proceed directly to transplant. Dr. Appelbaum stressed that patients should have adequate cytogenetic testing on their initial bone marrow sample to gather as much information as possible relating to relapse risk. Unfortunately for patients and caregivers listening to this tele-conference, the horse has already left the barn. Your tissue was either properly tested or it wasn't, and it's too late to do anything about it now. Where you are diagnosed often determines whether you receive state-of-the-art testing. Having an oncologist who keeps up with the latest research will also impact your testing and treatment.

My advice to anyone recently diagnosed with AML is to educate yourself and ask questions. Make sure every test available is performed on your leukemic cells. This will give you and your doctor the best information as to what treatment plan is your best option. Not all treatment is equal.

It's your life, so fight for it.

Crumbling Infrastructure

I had a DEXA scan recently to check for bone loss in my spine and hips. The chemotherapy I endured in May 2007 plunged me into menopause and may have been a contributing factor to my newly diagnosed osteoporosis. Yes, my bones, particularly my spine, are deteriorating.

While this news comes as no surprise (I am after all 54), my transplant doctor's recommendation to begin hormone replacement therapy (HRT) on top of a bone-building med gave me pause. I'd thought my running would protect me from bone loss. I had this crazy notion that drinking a cow's-worth of milk every day would fill in the potholes. Maybe I'd be a pile of dust by now if I hadn't been doing any weight-bearing exercise and consuming a fair amount of calcium. What shocked me though was the HRT. Wouldn't that increase my risk of developing cancer? I've been down that bumpy road and couldn't imagine taking a drug that might steer me down it again.

My doctor explained that while there is some evidence that HRT slightly increases the risk of breast and ovarian cancers, the risk of me suffering spinal fractures just by sneezing was greater and more pressing. Did I want to be the Incredible Shrinking Woman, or possibly develop a dowager's hump? Well, no. But I had been looking forward to finally being drug-free after my latest clinic visit, when I eagerly anticipated being cleared to stop the preventative meds I've been on since transplant.

So it's off two drugs, on two more. I chose the lesser of two evils, something I've grown accustomed to doing on this crushing journey. Fix the immediate problem, and deal with the consequences when or if any occur.

In the words of the Rolling Stones, what a drag it is getting old. I have to keep reminding myself that getting old has its benefits, the main one being that you're not dead yet.

Des bones are gonna rise again.

"The Exquisite Realization of Health"

Walt Whitman celebrates body and soul in his poem I sing the body electric. My soul was feeling fine post-election. I confirmed my physical health yesterday at my check-up at Dana Farber.

My blood is normal. My next check-up is in February. Yes, February.

Four immunizations, two in each arm, was my reward for good health. I had a nasty reaction to one or more of them. Dizziness and nausea drove me back to bed this morning. I'm feeling a little better now.

There's nothing like illness to make you appreciate wellness.

What, Me Worry?

It's been nine weeks since I last went to the clinic to have my blood tested. Nine weeks without checking to make sure my blood cells are behaving. One bad apple can spoil the whole bunch.

I've been dragging around my insecurity blanket these last couple of weeks. Some days I'm overwhelmed, other days I'm fine. On bad days, I crawl under the blanket and curse the darkness. On better days, I challenge myself to "accomplish" things, ticking off tasks with a vengeance.

When I'm not worrying about blood counts, I fret about when my son will get his act together and work on his college applications. Half his classmates are applying Early Decision, which means they've already submitted an application to their first-choice school. I'm wondering if Mark can even meet the Late Decision deadline.

Surprisingly, I'm not wasting an ounce of anxiety on our battered personal finances. We'll just plan on dying sooner rather than later.

Tomorrow morning I'll be handed a sheet of paper with numbers on it. Will they be winners? It's nerve-wracking to play this lottery, but play it I must.

Victory Ride

My friend Karen joined Team in Training last summer to raise money for the Leukemia and Lymphoma Society while training for a century ride (100 miles). Here's a note I got from Karen the other day:

The Intracoastal Waterway Century (100 miles) ride was last Sunday - what a beautiful day it was! Sunny and cool with lots of water views. The event had about 500 riders of which 83 were TNT members from around Florida. Starting in Cocoa we headed north up to Titusville, over the water to the space center area and then southward to the end of Merritt Island, passing back to the mainland, and then north again back to the beginning. It was rather windy in the northbound direction, adding an extra challenge; but all for a very important cause. All in all the TNT team raised over $173,000, so thank you again for your contribution to The Leukemia & Lymphoma Society (LLS). Contributions to the LLS have helped fund research for new drugs like Gleevec which is used by one of our team members, making it possible for him to train and complete the century ride!

Karen rode in memory of a friend who died of Hodgkins lymphoma many years ago, and in honor of me and my battle with leukemia. Thank you Karen and all Team in Training participants who help raise money to fund the war on blood cancers.

The Dark Place

I made an unscheduled visit to the Dark Place yesterday, a place I hadn't been to in quite some time. Some of you know this gloomy territory all too well: extremely negative emotions are nurtured and amplified; fear, anger and resignation rule.

I woke up with aching muscles on top of the usual creaking joints, but otherwise felt okay. For some reason, my thoughts went running toward the door posted DANGER DO NOT ENTER. Enter I did.

I tried to recall what my symptoms had been when I was first diagnosed with leukemia, and then again when I relapsed. I never had any of the classic signs, just a vague sense that maybe things weren't 100%. Unfortunately, anything short of perfect health falls into this category.

Some serious digestive track issues suddenly hit me and jolted me out of my funk. The thought that a stomach virus of some sort could explain the aches and general malaise I was experiencing made me almost gleeful. Was this merely more fallout from last weekend's germfest? I liked this explanation, and grasped at it so tightly my hand cramped.

Another thing I liked: chatting with fellow veterans Dori and Ann. Dori's husband Jim called just as I was trying to rally myself for a trip to the supermarket. Jim authors the blog Run for Dori and recently participated in the Nike Women's Marathon for Team in Training. Dori had a transplant for AML one month after I did and knows well the hellish physical and mental paths traveled by leukemia patients. Later in the afternoon I spoke with Ann of Ann's Fight. She's coping with the challenges of transplant #2 and knows the Dark Place well. I was easily able to share my thoughts with her, and she pulled me back into a better place.

In my next life, I plan to be a dog. Dogs live in the moment and don't know from dark places.

Virus Vanquished

By Monday night, the first symptoms of a cold laid me low. Tuesday was a blur, and I canceled all plans on Wednesday. By Thursday, I felt much better. Today I ran 2 miles.

I've had worse colds.

My hybrid immune system appears to be functioning fairly well. According to my doctor, dual cord engraftment might ultimately yield stronger overall immunity, a 1-2 punch against invaders.

Hey, T-cells. Make sure you're keeping an eye on the enemy from within, especially any cells cloning out of control. That's what I'm paying you for.


Here's a family photo from the weekend: