"Look, Tom. I'm a little drip."
"No. You're more like a big drip."
With a bag of blood perched on a silver pole, its contents slowly slowly funneling through a series of lines and tubes, Tom and I bantered and chatted and told bad Big Brother/Little Sister jokes as if oblivious to the miracle unfolding between us.
My stem cells -- all nine million of them -- were beginning the journey to their new home just after 4 p.m. on Tuesday May 27, 2008. But before they seeped into my oldest brother's body, a cake, birthday cards and boxing gloves were in order.
Day Zero, A New Birthday, Rejuvenation Day, Transplantation Day -- all names given the day that cancer patients (or others with blood disorders) receive a new lease on life via Peripheral Blood Stem Cells. Like blood-building-blocks, these stem cells multiply and grow into platelets, white cells or red cells and fill damaged bone marrow with a new cancer-free immune system.
My brother turned 63 on May 2.
Tuesday, he celebrated another birth-day with a tiny wind-up toy birthday cake presented by our mother, birthday cards and a pair of old symbolic boxing gloves given by our oldest sister, Anne. Carrying in the pint bag of stem cells, the nurse sang "Happy Birthday."
Soon, Tom's central Hickman chest catheter flowed with bright red liquid collected from me the previous day.
The official count of stem cells in the first bag?
3.74 million.
Don't ask me, I have no idea what that means or how cells that can't be seen can be counted. Only that it was enough to start Tom's transplant, which is similar to a transfusion of blood.
Just an hour earlier, a second bag of stem cells had been collected from me in the Apheresis Unit. Like the day before, the process lasted just short of four hours.
An apheresis unit nurse rushed the second bag up to the laboratory for processing. I knew at least five million stem cells were needed for my brother, based on his weight. But I had no idea how many cells this little sister's veins popped out Tuesday. Twenty minutes after my brother's transplant began, a nurse stopped me in the hall to give me the news: "Five million more stem cells today! Great job! That's a total of almost nine million. Way to go."
Even my big brother was impressed.
We all gathered around his bed, taking photos, pulling up chairs, taking calls on cell phones from well-wishers, including a brother in Kansas. Our 89-year-old mother stood steadfastly by watching her oldest child endure a risky cancer treatment.
The day was poignant in another way for our family, especially for our mother.
May 27 is the birthday of our second oldest brother, John, who unexpectedly died of a heart attack 13 years ago. Now, it's a birthday of her oldest child whose immune system is being reborn with the blood of her youngest child.
All seem to be going well until Tom developed severe chills, chills that wouldn't stop no matter how many blankets were piled atop him. Benadryl, then Demerol finally helped. Such a reaction is fairly common with any blood transfusion, we had been warned ahead of time but it scared everyone in the room. The nurse reassured the family that Tom could stay and receive fluids until he felt better, which turned out to be about 9:30 p.m. -- 13 hours after he'd arrive that morning, including enduring a full hour of full-body radiation.
I had already left for home when he suffered the reaction. So I felt bad I hadn't stayed. My Mom felt bad because she couldn't do anything to help. Of course, his wife and daughter also felt scared and helpless.
It's, unfortunately, the beginning of a lot of unknowns that lie ahead. Tom's immune system is essentially non-existent so avoiding people, germs and infection is of utmost importance. Four months is how long he and his wife have lived in downtown Seattle while going through countless medical appointments, blood tests, pre-transplant protocol screenings and doctors' conferences at Seattle Cancer Care Alliance.
Now the countdown begins from Day Zero to Day 100.
That's how long patients generally need for their immune system to strengthen and for their bodies to start recovering.
It means three more months away for my brother and his wife from their sprawling rural log home in the mountain town of Leavenworth. Three more months biding time reading, watching Mariners baseball game on TV, piecing together puzzles in a one-bedroom apartment at Fred Hutchinson Cancer Research Center's Pete Gross House for out-of-town cancer patients. Three more months making countless daily trips down to the clinic for one more blood draw.
But Day Zero is finally behind us.
And Day One is done.
Wednesday, May 28, 2008
Monday, May 26, 2008
A is for Apheresis
Memorial Day 2008
A is for Apheresis, how the stem cells are spun
B is bruises, boy, do I have one
C is for (oxy)codone and going from "Ow" to "Wow"
D is for delirious, I better quit right about now.
Yes, good guess. It's been a very long day. Strapped down in a hospital bed for more than four hours, both arms ramrod straight, each with needles and plastic tubes and bandages, all connected to a strange-looking clickty-clack machine that somehow sucked out my stem cells from my right arm, spit them into an empty plastic bag and then returned my own blood through my left arm.
It didn't hurt, at least not at first.
And even when it did begin hurting about two hours into the collection
(okay, more like a slow burn, piercing stabbing pain suddenly pulsing from the huge intravenous needle in my left arm) once the bright red liquid began trickling into the stem cell collection bag, hope helped me cope.
With my brother, Tom, his wife, Mary, and daughter, Gilly, looking on, the process called apheresis spun red liquid through a blood cell separator, in and out and up and down various tubes. Black round dials on the machine clicked and clacked around and around as the centrifuge separated the heavier stem cells from the platelets, white cells and red cells.
While the bright red stem cells came out of my right arm and slowly filled the hanging plastic bag, the "leftovers" from the process -- platelets, white cells and red cells -- made their way back into my system via my left arm.
Periodically, a blood pressure cuff wrapped around my lower leg would squeeze another pressure reading to add to reams of read-outs and blinking measurements.
Apheresis, by the way, is a Greek term, meaning "taking away."
(This concept did not, though, apply to my bladder, which was forced to KnockKneesis, a Kindergarten term, meaning "hold it in.")
All was going fine until the sudden burn in my left arm. A kink formed in the line, followed by swelling and sudden bruising in the crook of my elbow. Michelle, the nurse, stopped the machine and the flow, repositioned the I.V., then reversed the flow so my left arm now extracted the blood and my right arm received it back. The clickty-clack slowed down to a clack-clack-clack for quite some time before it returned to a faster clip.
Actually, it really didn't matter how fast or slow the collection occurred because I couldn't do anything either way. Apparently, I was misinformed about what activities I'd be able to do lying flat on my back for the afternoon. I dragged in a bag of books, newspapers and magazines to catch up on my reading.
How funny.
Because the first thing Michelle, the very attentive nurse, told me: "Now after I wash down your arms and prepare them for the I.V., you can't bend or move your arms."
Which makes it rather hard to hold any reading material.
Never fear. After my mother and sister, Anne, showed up, I made them turn the pages of The New York Times Magazine and prop it just so on my bent knees so I could read a cautionary tale about being a blogger (which is sort-of-why a profile and photos have yet to appear on this here blog, at least for now.)
The strange stem cell pain in my back and hips subsided, as had been predicted, with some help from pain-killing prescriptions the clinic gave me. However, I continually ran a fever, all day, from the time I received another round of growth-factor shots at 9 a.m., all during the apheresis and into the night as I swilled continuous glasses of water and juice to replace lost fluids.
My temp. never got higher than 100.4 degrees but it kept me sweating all day and night.
This is also a reaction to the growth-factor shots as the body reacts to being flooded with white blood cells. Much like putting up its dukes to fend off the flu, my body's usual disease-fighting mechanisms -- such as sweating to cool down -- were on alert.
Only it turned out to be a drill. Had this been an actual emergency....
Even though I craved coolness, Michelle the ever-smiling and helpful nurse kept piling white fresh-out-of-the-warmer blankets on me.
"It's to get your veins warmed up and pumping," she said.
I nodded a bead of sweat.
She then stepped out of the room and returned with a bright multi-colored double-sided double-lined fleece blanket, asking: "Would you like this?"
I thought, she's was so nice, but not so perceptive.
"No thanks, I'm really warm."
"Oh no, I mean to keep," she laughed. "These are made by our volunteers to give to the donors."
Well, in that case.....
The blanket swirled in colors of blue, orange, yellow, red and green looking like a rainbow of kelp swaying in the ocean. A fringe of delicately-tied knots connected the bright sea side to a plain yellow side of soft fleece. Very soft, very comforting. And within minutes of my brother and his wife admiring it, Michelle presented Tom with a blanket of the same design and material only with a lining of blue.
"Wouldn't you like to lay down for a while," she then asked my brother, picking up on the weariness and fatigue of his constant unwanted companion,
non-Hodgkins Lymphoma. And with that, my brother took a nap in the bed beside mine, matching blankets at our feet, the red flow of life silently seeping between us.
A is for Apheresis, how the stem cells are spun
B is bruises, boy, do I have one
C is for (oxy)codone and going from "Ow" to "Wow"
D is for delirious, I better quit right about now.
Yes, good guess. It's been a very long day. Strapped down in a hospital bed for more than four hours, both arms ramrod straight, each with needles and plastic tubes and bandages, all connected to a strange-looking clickty-clack machine that somehow sucked out my stem cells from my right arm, spit them into an empty plastic bag and then returned my own blood through my left arm.
It didn't hurt, at least not at first.
And even when it did begin hurting about two hours into the collection
(okay, more like a slow burn, piercing stabbing pain suddenly pulsing from the huge intravenous needle in my left arm) once the bright red liquid began trickling into the stem cell collection bag, hope helped me cope.
With my brother, Tom, his wife, Mary, and daughter, Gilly, looking on, the process called apheresis spun red liquid through a blood cell separator, in and out and up and down various tubes. Black round dials on the machine clicked and clacked around and around as the centrifuge separated the heavier stem cells from the platelets, white cells and red cells.
While the bright red stem cells came out of my right arm and slowly filled the hanging plastic bag, the "leftovers" from the process -- platelets, white cells and red cells -- made their way back into my system via my left arm.
Periodically, a blood pressure cuff wrapped around my lower leg would squeeze another pressure reading to add to reams of read-outs and blinking measurements.
Apheresis, by the way, is a Greek term, meaning "taking away."
(This concept did not, though, apply to my bladder, which was forced to KnockKneesis, a Kindergarten term, meaning "hold it in.")
All was going fine until the sudden burn in my left arm. A kink formed in the line, followed by swelling and sudden bruising in the crook of my elbow. Michelle, the nurse, stopped the machine and the flow, repositioned the I.V., then reversed the flow so my left arm now extracted the blood and my right arm received it back. The clickty-clack slowed down to a clack-clack-clack for quite some time before it returned to a faster clip.
Actually, it really didn't matter how fast or slow the collection occurred because I couldn't do anything either way. Apparently, I was misinformed about what activities I'd be able to do lying flat on my back for the afternoon. I dragged in a bag of books, newspapers and magazines to catch up on my reading.
How funny.
Because the first thing Michelle, the very attentive nurse, told me: "Now after I wash down your arms and prepare them for the I.V., you can't bend or move your arms."
Which makes it rather hard to hold any reading material.
Never fear. After my mother and sister, Anne, showed up, I made them turn the pages of The New York Times Magazine and prop it just so on my bent knees so I could read a cautionary tale about being a blogger (which is sort-of-why a profile and photos have yet to appear on this here blog, at least for now.)
The strange stem cell pain in my back and hips subsided, as had been predicted, with some help from pain-killing prescriptions the clinic gave me. However, I continually ran a fever, all day, from the time I received another round of growth-factor shots at 9 a.m., all during the apheresis and into the night as I swilled continuous glasses of water and juice to replace lost fluids.
My temp. never got higher than 100.4 degrees but it kept me sweating all day and night.
This is also a reaction to the growth-factor shots as the body reacts to being flooded with white blood cells. Much like putting up its dukes to fend off the flu, my body's usual disease-fighting mechanisms -- such as sweating to cool down -- were on alert.
Only it turned out to be a drill. Had this been an actual emergency....
Even though I craved coolness, Michelle the ever-smiling and helpful nurse kept piling white fresh-out-of-the-warmer blankets on me.
"It's to get your veins warmed up and pumping," she said.
I nodded a bead of sweat.
She then stepped out of the room and returned with a bright multi-colored double-sided double-lined fleece blanket, asking: "Would you like this?"
I thought, she's was so nice, but not so perceptive.
"No thanks, I'm really warm."
"Oh no, I mean to keep," she laughed. "These are made by our volunteers to give to the donors."
Well, in that case.....
The blanket swirled in colors of blue, orange, yellow, red and green looking like a rainbow of kelp swaying in the ocean. A fringe of delicately-tied knots connected the bright sea side to a plain yellow side of soft fleece. Very soft, very comforting. And within minutes of my brother and his wife admiring it, Michelle presented Tom with a blanket of the same design and material only with a lining of blue.
"Wouldn't you like to lay down for a while," she then asked my brother, picking up on the weariness and fatigue of his constant unwanted companion,
non-Hodgkins Lymphoma. And with that, my brother took a nap in the bed beside mine, matching blankets at our feet, the red flow of life silently seeping between us.
Sunday, May 25, 2008
Just the stem cell facts, ma'm
My stem cells hurt.
That's a sentence I never thought I'd say.
But they do. Whatever they are and whatever they do, they hurt.
In my back, my hips and my head.
The pain woke me up at 6 this morning out of a sleeping pill-induced slumber.
Sharp darting pain in and out of my lower back.
I'd had two rounds of a shot meant to jump start my stem cells into overproduction and round three was scheduled later that morning at the Seattle Cancer Care Alliance.
I fumbled my way to a cupboard and took two of the allowed pain killers, non-aspirin acetaminophen, then rocked and rolled into varying positions until sleep found me again.
But what the heck are stem cells and why are they building up inside me like a river about to flood its banks?
Here's the quick explanation:
Stem cells are starter cells, baby blood cells so to speak.
They are formed in the bone marrow, the soft sponge-like lining found in the bones.
Stem cells mature into one of the three types of blood cells: white cells, which fight infection; red blood cells, which carry oxygen; and platelets, which help the blood to clot.
Hematopoietic or blood-forming Stem cells are NOT embryonic stem cells, which can develop into any cell in the body. (These are the cells under research for disease-curing potential and mired in religious, ethical and political controversy.)
Blood stem cells, on the other hand, have been quietly and successfully saving lives and curing cancers for decades.
Three sources of blood stem cells are:
Collecting them directly from the bone marrow by cutting them out of the bone; collecting them from the bloodstream; collecting them from the umbilical cord after a baby is born.
Previously, cancer patients receiving a new immune system using stem cells underwent a bone marrow transplant. In that procedure, a donor underwent the painful removal of bone marrow from the hip bone using a large needle. The bone marrow was "harvested" to remove blood and bone fragments
Now, using new procedures pioneered at the Fred Hutchinson Cancer Research Center where my brother is receiving his medical care, stem cells are collected directly from the bloodstream using an easier process with much smaller needles!
Nurses tell me the procedure is still often referred to as a bone marrow transplantation (BMT) even though 90 percent of the time patients are actually undergoing a stem cell transplant, technically known as peripheral blood stem cell transplantation (PBSCT).
White Cells: Going Up, Going Down
While I'm undergoing four days worth of shots stuck into my stomach (they don't hurt at all, just take a long time to empty) containing a growth factor to stimulate my body's stem cell production, my brother endures the opposite. This past week, he received daily doses of chemotherapy to further kill off cancer cells and destroy his cancer-plagued immune system. Hours before he receives my blood, he undergoes a final full-body radiation.
While his white cells continue a precipitous drop, mine are climbing off the charts.
After just one round of the shot called Neupogen -- containing what's known as Granulocyte Colony-Stimulating Factor (G-CSF) my white cell count tripled.
My first dose was Friday. It's now Sunday, or Day Three of the Neupogen shots and my white cell counts have climbed from 7,000 to 35,000.
The body usually produces only as many new stem cells as it needs to continue the miraculous daily balancing act of living, breathing and sorting out good and bad germs.
Now stem cells are literally spilling out of my bone marrow into my bloodstream and "pooling" in the spots where they grow in the greatest number -- hips, lower back, parts of the head. Which explains my pain.
But that pain will subside once the stem cells find a place to go. And they will tomorrow when they are collected and separated using complicated machinery and a process called apheresis.
But more on that after I experience it.
In two days, May 27, 2008, fresh, new and pure stem cells are to be transplanted, or infused, into my brother so they will grow into a new immune system while fighting off any remaining cancer cells. The start of the process, known as engraftment, seems easy. Similar to a blood transfusion, a plastic bag full of bright red liquid -- my stem cells -- will slowly drip into my brother intravenously.
It may only take 30 minutes to an hour.
But it's the beginning of a very long and nerve-racking 100 days called engraftment.
There may be many bumps and bruises along the long road. But I'm confident of the end result: A Cure.
The countdown to Day Zero -- my brother's New Birthday -- is almost over.
That's a sentence I never thought I'd say.
But they do. Whatever they are and whatever they do, they hurt.
In my back, my hips and my head.
The pain woke me up at 6 this morning out of a sleeping pill-induced slumber.
Sharp darting pain in and out of my lower back.
I'd had two rounds of a shot meant to jump start my stem cells into overproduction and round three was scheduled later that morning at the Seattle Cancer Care Alliance.
I fumbled my way to a cupboard and took two of the allowed pain killers, non-aspirin acetaminophen, then rocked and rolled into varying positions until sleep found me again.
But what the heck are stem cells and why are they building up inside me like a river about to flood its banks?
Here's the quick explanation:
Stem cells are starter cells, baby blood cells so to speak.
They are formed in the bone marrow, the soft sponge-like lining found in the bones.
Stem cells mature into one of the three types of blood cells: white cells, which fight infection; red blood cells, which carry oxygen; and platelets, which help the blood to clot.
Hematopoietic or blood-forming Stem cells are NOT embryonic stem cells, which can develop into any cell in the body. (These are the cells under research for disease-curing potential and mired in religious, ethical and political controversy.)
Blood stem cells, on the other hand, have been quietly and successfully saving lives and curing cancers for decades.
Three sources of blood stem cells are:
Collecting them directly from the bone marrow by cutting them out of the bone; collecting them from the bloodstream; collecting them from the umbilical cord after a baby is born.
Previously, cancer patients receiving a new immune system using stem cells underwent a bone marrow transplant. In that procedure, a donor underwent the painful removal of bone marrow from the hip bone using a large needle. The bone marrow was "harvested" to remove blood and bone fragments
Now, using new procedures pioneered at the Fred Hutchinson Cancer Research Center where my brother is receiving his medical care, stem cells are collected directly from the bloodstream using an easier process with much smaller needles!
Nurses tell me the procedure is still often referred to as a bone marrow transplantation (BMT) even though 90 percent of the time patients are actually undergoing a stem cell transplant, technically known as peripheral blood stem cell transplantation (PBSCT).
White Cells: Going Up, Going Down
While I'm undergoing four days worth of shots stuck into my stomach (they don't hurt at all, just take a long time to empty) containing a growth factor to stimulate my body's stem cell production, my brother endures the opposite. This past week, he received daily doses of chemotherapy to further kill off cancer cells and destroy his cancer-plagued immune system. Hours before he receives my blood, he undergoes a final full-body radiation.
While his white cells continue a precipitous drop, mine are climbing off the charts.
After just one round of the shot called Neupogen -- containing what's known as Granulocyte Colony-Stimulating Factor (G-CSF) my white cell count tripled.
My first dose was Friday. It's now Sunday, or Day Three of the Neupogen shots and my white cell counts have climbed from 7,000 to 35,000.
The body usually produces only as many new stem cells as it needs to continue the miraculous daily balancing act of living, breathing and sorting out good and bad germs.
Now stem cells are literally spilling out of my bone marrow into my bloodstream and "pooling" in the spots where they grow in the greatest number -- hips, lower back, parts of the head. Which explains my pain.
But that pain will subside once the stem cells find a place to go. And they will tomorrow when they are collected and separated using complicated machinery and a process called apheresis.
But more on that after I experience it.
In two days, May 27, 2008, fresh, new and pure stem cells are to be transplanted, or infused, into my brother so they will grow into a new immune system while fighting off any remaining cancer cells. The start of the process, known as engraftment, seems easy. Similar to a blood transfusion, a plastic bag full of bright red liquid -- my stem cells -- will slowly drip into my brother intravenously.
It may only take 30 minutes to an hour.
But it's the beginning of a very long and nerve-racking 100 days called engraftment.
There may be many bumps and bruises along the long road. But I'm confident of the end result: A Cure.
The countdown to Day Zero -- my brother's New Birthday -- is almost over.
Tuesday, May 20, 2008
"Don't kiss any doorknobs"
Is this what it's like to be pregnant? Feeling responsible for two lives?
How do I balance the responsibility of staying healthy and intact for the benefit of my brother versus carrying on with my own life?
Something I cannot see, feel or even touch, something inside of me, could cure him of cancer.
How do I deal with that?
Below are some of my thoughts on that theme.
My sister had a great idea.
Or so she thought. After a cold and never ending winter-spring, Seattle's temperature was predicted to climb into the 80's. We were all to go visit my brother, Tom, downtown at his home-away-from-home, the Pete Gross House for out-of-town patients of the Seattle Cancer Care Alliance. His wife, Mary, was returning home for a few days to Leavenworth and by orders of his doctor, Tom needed to have a caregiver around like all the stem cell transplant cancer patients do. We were going to split up the three days between my sister, Barb, and I. (We live in Shoreline, about a 20-minute drive to Tom's place in no traffic or 90 minutes in Seattle's notorious 1-5 slowups.)
"Why don't we bike down to Tom's place?" Barb poses this question the day before our visit. Though it seems a daunting trek to me from this northern suburb to downtown Seattle, Barb and her husband, Ken, bicycle everywhere, including the 6-mile round trip to work every day.
I, on the other hand, used to be a bicycle helmet head but I gave it up after a few years of feeling like a pin ball in Atlanta's car-crazed culture. Plus, I sadly gave away my favorite turquoise and yellow mountain bike to a good friend (hoping he'd fix it up and wheel it out here) before leaving for the Great Northwest last year.
So I grabbed my other brother-in-law's bike, this one neglected and sullen and tucked under a mossy black tarp in the backyard. His neighbor offered to fill up the tires, grease the chain and check it out.
The next morning, I happily whizzed back and forth on neighborhood streets with little traffic. It felt great! I'd forgotten that wonderful free-riding feeling atop a bicycle seat, legs pumping and lungs soon huffing and puffing.
But then I remembered my not-so-great moments in my bicycle past life. My good friend spilling over her handlebars and banging up her vision, back and body into life-altering injuries. Me, in my first year in college when I rode my trusty bike named Jiminy Cricket everywhere, getting nailed by a car that tried to make a left-hand turn through me. And my other brother (not Tom) nicknaming me Frankenstein when he saw my battered and bruised face.
No, biking 15 or so miles to visit Tom might not be such a great idea, after all, even if most of it's on bike trails I told my sis.
"You know, I do have to keep myself safe and healthy for Tom's transplant," I reminded her and her husband. "So I'm not inclined to go play in traffic."
"Oh yeah, that's probably a good idea," they responded.
Three weeks ago, I also wrestled with my responsibility toward my brother's life versus carrying on with my own life. My best friend in Atlanta was getting married May 4.
How could I not go?
Besides it being one-of-those late-in-life weddings that seem both realistic and implausible at the same time, friends from all over the country -- and Japan -- would be there.
But should I get on a plane? There's all those nasty germs floating around in the stale airplane air. And, you know, planes crash. Every once in awhile.
Of course, we all know that getting into a car carries more risk than boarding a plane. But somehow I don't dwell on that fact every time I drive on the highway to get to the cancer center.
So two days before my Atlanta trip, in a last-minute phone call before heading down to the cancer center for some more blood work, I ask if the social worker can see me.
"At some point, donors take a step back and realize what a grand gesture this is," Eric Hanson tells me. "It can seem overwhelming."
Being able to give a life-force, literally, lifeblood, to save a family member's life brings out the proverbial burden-and-blessing conflict.
It is also a time, Hanson says, that brings together siblings who have never been particularly close or it can further bond tight families. The transplant process also puts a magnifying glass on family dynamics that were already stressful and problematic.
"It's tempting to try and work through a lot of old stuff but this really isn't the time. The focus should just be on Tom and getting Tom healthy."
Hanson's advice, in the end: Go about your normal routine, Go to Atlanta, drink plenty of water, use lots of hand sanitizer, and don't take any risks above-and-beyond daily living.
Oh yes.
One more thing.
"Don't kiss any doorknobs, if you get my drift."
Turns out there was an attractive doorknob in Atlanta.
But I didn't open the door.
How do I balance the responsibility of staying healthy and intact for the benefit of my brother versus carrying on with my own life?
Something I cannot see, feel or even touch, something inside of me, could cure him of cancer.
How do I deal with that?
Below are some of my thoughts on that theme.
My sister had a great idea.
Or so she thought. After a cold and never ending winter-spring, Seattle's temperature was predicted to climb into the 80's. We were all to go visit my brother, Tom, downtown at his home-away-from-home, the Pete Gross House for out-of-town patients of the Seattle Cancer Care Alliance. His wife, Mary, was returning home for a few days to Leavenworth and by orders of his doctor, Tom needed to have a caregiver around like all the stem cell transplant cancer patients do. We were going to split up the three days between my sister, Barb, and I. (We live in Shoreline, about a 20-minute drive to Tom's place in no traffic or 90 minutes in Seattle's notorious 1-5 slowups.)
"Why don't we bike down to Tom's place?" Barb poses this question the day before our visit. Though it seems a daunting trek to me from this northern suburb to downtown Seattle, Barb and her husband, Ken, bicycle everywhere, including the 6-mile round trip to work every day.
I, on the other hand, used to be a bicycle helmet head but I gave it up after a few years of feeling like a pin ball in Atlanta's car-crazed culture. Plus, I sadly gave away my favorite turquoise and yellow mountain bike to a good friend (hoping he'd fix it up and wheel it out here) before leaving for the Great Northwest last year.
So I grabbed my other brother-in-law's bike, this one neglected and sullen and tucked under a mossy black tarp in the backyard. His neighbor offered to fill up the tires, grease the chain and check it out.
The next morning, I happily whizzed back and forth on neighborhood streets with little traffic. It felt great! I'd forgotten that wonderful free-riding feeling atop a bicycle seat, legs pumping and lungs soon huffing and puffing.
But then I remembered my not-so-great moments in my bicycle past life. My good friend spilling over her handlebars and banging up her vision, back and body into life-altering injuries. Me, in my first year in college when I rode my trusty bike named Jiminy Cricket everywhere, getting nailed by a car that tried to make a left-hand turn through me. And my other brother (not Tom) nicknaming me Frankenstein when he saw my battered and bruised face.
No, biking 15 or so miles to visit Tom might not be such a great idea, after all, even if most of it's on bike trails I told my sis.
"You know, I do have to keep myself safe and healthy for Tom's transplant," I reminded her and her husband. "So I'm not inclined to go play in traffic."
"Oh yeah, that's probably a good idea," they responded.
Three weeks ago, I also wrestled with my responsibility toward my brother's life versus carrying on with my own life. My best friend in Atlanta was getting married May 4.
How could I not go?
Besides it being one-of-those late-in-life weddings that seem both realistic and implausible at the same time, friends from all over the country -- and Japan -- would be there.
But should I get on a plane? There's all those nasty germs floating around in the stale airplane air. And, you know, planes crash. Every once in awhile.
Of course, we all know that getting into a car carries more risk than boarding a plane. But somehow I don't dwell on that fact every time I drive on the highway to get to the cancer center.
So two days before my Atlanta trip, in a last-minute phone call before heading down to the cancer center for some more blood work, I ask if the social worker can see me.
"At some point, donors take a step back and realize what a grand gesture this is," Eric Hanson tells me. "It can seem overwhelming."
Being able to give a life-force, literally, lifeblood, to save a family member's life brings out the proverbial burden-and-blessing conflict.
It is also a time, Hanson says, that brings together siblings who have never been particularly close or it can further bond tight families. The transplant process also puts a magnifying glass on family dynamics that were already stressful and problematic.
"It's tempting to try and work through a lot of old stuff but this really isn't the time. The focus should just be on Tom and getting Tom healthy."
Hanson's advice, in the end: Go about your normal routine, Go to Atlanta, drink plenty of water, use lots of hand sanitizer, and don't take any risks above-and-beyond daily living.
Oh yes.
One more thing.
"Don't kiss any doorknobs, if you get my drift."
Turns out there was an attractive doorknob in Atlanta.
But I didn't open the door.
Friday, May 2, 2008
I'm thinking red
Earth Day 2008
April 22, 2008
SEATTLE -- Green is on every one's mind today. Except mine. I'm thinking red, as in blood. My blood and my brother's blood. I'm sitting looking out at a lovely view of Lake Union and sailboats and Seattle's Space Needle skyline but preoccupied with thoughts of blood. A Seattle Cancer Care Alliance technician has just collected eight tubes of my A positive blood, and I've dutifully pee-ed in a cup, and now I'm nervously awaiting the results. Today is the day I find out whether I'll be the blood sister. Whether I'll pass all the tests and be determined healthy enough to be a donor match for a stem cell transplant that could save my brother's life. This has weighed heavily on my mind since I was deemed the "perfect"match two weeks ago. However, I know better than anyone how unreliable and "weak" my blood has been to me the past two years. (Some of you, my friends back in Atlanta may also recall my days of sleep-walking through my life. At one point, a doctor commented, "I'm amazed you can even stand up, let alone function." )Back then, my red blood cell counts had dipped so low and had so little iron that my body started drawing from its own reserve in the bone marrow, the bone marrow that was now highly desired by my much sicker brother. He's been fighting non-Hodgkin's Lymphoma for more than three years now. The first year the doctors followed a "watch and wait" approach after removing a part of his colon where the cancer had spread. Then for about 18 months, many rounds of chemo kept the tumors on his neck fairly in check. One year ago, he had surgery after prostate cancer was discovered. In January, he and his wife and daughter moved to Seattle from Leavenworth (120 miles east of Seattle) to start a stem-cell transplant at Fred Hutchinson, part of Seattle Cancer Care Alliance. All was on track for Tom to have a stem-cell transplant using his own blood, which was to been drawn out and then infused back into his own body following a very toxic regime of radioactive chemicals -- requiring he be quarantined in a hospital room for 10 days with no visits from anyone. Tom was to be part of an experimental drug regiment of treatment using Bexxar, found to be the best drug to put his type of cancer in remission for years. However, after weeks and weeks and test after test, Tom's oncology team broke the bad news he ultimately didn't qualify for this treatment -- his heart function wasn't strong enough, combined with his too "old" age (he turns 63 on May 2) AND to top it off, doctors found signs of leukemia in the blood he had stored for his own use. So the next best treatment is using a donor -- preferably a sibling for the best possible match. There are four siblings for my oldest brother to choose from. I and my oldest sister, Anne, are both "perfect," however, I'm "more perfect" because I'm younger. But I've been worried my blood wasn't strong enough as my body just wasn't absorbing iron, basic nutrients due to an unknown and silent condition --- gluten intolerance. Up until about one year ago, doctors had me on an intravenous iron therapy which I received once a week in a three-hour procedure in the same room where cancer patients like Tom were connected to their chemo I.V. drips. I never had a name for my condition but it sure came with a real list of symptoms. Fast forward two years later. New city, new life, and a renewed sense of well-being. Here I am looking and feeling more healthy than I have in years (and I mean years) but still unsure about the "official" status of my blood. I sure feel a zillion times more energetic than I did one year ago, and my latest blood work in December indicated that my anemia was finally under control. Still, I worried. Mostly, I didn't want to get Tom's hopes up, as he's been through so many ups and downs, promises and protocol and so many tests and results that have altered his ultimate hope - a life-altering and life-sustaining stem-cell transplant. I did tell him last week that it was very fortunate that Anne could still be considered "on deck" if it was determined I struck out on the required donor health tests. It was explained to be today that Anne is considered just as suitable a match, only she has a few more years on her blood. The younger the donor, the better. And also, they prefer barren women--- as in women who haven't delivered children -- boy, did Tom get lucky in that department too since none of his sisters opted to have children. The thought is that developing babies rob or change the status of a person's stem cell bank, so if there's a choice of donors, they'll take the female who's never bore children. Plus, they prefer them to be under age 50. So it's looking like the little sister is looking good!!!!
But what about those pesky blood tests that will determine whether I really am "perfect?"
April 22, 2008
SEATTLE -- Green is on every one's mind today. Except mine. I'm thinking red, as in blood. My blood and my brother's blood. I'm sitting looking out at a lovely view of Lake Union and sailboats and Seattle's Space Needle skyline but preoccupied with thoughts of blood. A Seattle Cancer Care Alliance technician has just collected eight tubes of my A positive blood, and I've dutifully pee-ed in a cup, and now I'm nervously awaiting the results. Today is the day I find out whether I'll be the blood sister. Whether I'll pass all the tests and be determined healthy enough to be a donor match for a stem cell transplant that could save my brother's life. This has weighed heavily on my mind since I was deemed the "perfect"match two weeks ago. However, I know better than anyone how unreliable and "weak" my blood has been to me the past two years. (Some of you, my friends back in Atlanta may also recall my days of sleep-walking through my life. At one point, a doctor commented, "I'm amazed you can even stand up, let alone function." )Back then, my red blood cell counts had dipped so low and had so little iron that my body started drawing from its own reserve in the bone marrow, the bone marrow that was now highly desired by my much sicker brother. He's been fighting non-Hodgkin's Lymphoma for more than three years now. The first year the doctors followed a "watch and wait" approach after removing a part of his colon where the cancer had spread. Then for about 18 months, many rounds of chemo kept the tumors on his neck fairly in check. One year ago, he had surgery after prostate cancer was discovered. In January, he and his wife and daughter moved to Seattle from Leavenworth (120 miles east of Seattle) to start a stem-cell transplant at Fred Hutchinson, part of Seattle Cancer Care Alliance. All was on track for Tom to have a stem-cell transplant using his own blood, which was to been drawn out and then infused back into his own body following a very toxic regime of radioactive chemicals -- requiring he be quarantined in a hospital room for 10 days with no visits from anyone. Tom was to be part of an experimental drug regiment of treatment using Bexxar, found to be the best drug to put his type of cancer in remission for years. However, after weeks and weeks and test after test, Tom's oncology team broke the bad news he ultimately didn't qualify for this treatment -- his heart function wasn't strong enough, combined with his too "old" age (he turns 63 on May 2) AND to top it off, doctors found signs of leukemia in the blood he had stored for his own use. So the next best treatment is using a donor -- preferably a sibling for the best possible match. There are four siblings for my oldest brother to choose from. I and my oldest sister, Anne, are both "perfect," however, I'm "more perfect" because I'm younger. But I've been worried my blood wasn't strong enough as my body just wasn't absorbing iron, basic nutrients due to an unknown and silent condition --- gluten intolerance. Up until about one year ago, doctors had me on an intravenous iron therapy which I received once a week in a three-hour procedure in the same room where cancer patients like Tom were connected to their chemo I.V. drips. I never had a name for my condition but it sure came with a real list of symptoms. Fast forward two years later. New city, new life, and a renewed sense of well-being. Here I am looking and feeling more healthy than I have in years (and I mean years) but still unsure about the "official" status of my blood. I sure feel a zillion times more energetic than I did one year ago, and my latest blood work in December indicated that my anemia was finally under control. Still, I worried. Mostly, I didn't want to get Tom's hopes up, as he's been through so many ups and downs, promises and protocol and so many tests and results that have altered his ultimate hope - a life-altering and life-sustaining stem-cell transplant. I did tell him last week that it was very fortunate that Anne could still be considered "on deck" if it was determined I struck out on the required donor health tests. It was explained to be today that Anne is considered just as suitable a match, only she has a few more years on her blood. The younger the donor, the better. And also, they prefer barren women--- as in women who haven't delivered children -- boy, did Tom get lucky in that department too since none of his sisters opted to have children. The thought is that developing babies rob or change the status of a person's stem cell bank, so if there's a choice of donors, they'll take the female who's never bore children. Plus, they prefer them to be under age 50. So it's looking like the little sister is looking good!!!!
But what about those pesky blood tests that will determine whether I really am "perfect?"
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