Doug Booth
Age:
58
Family: Adult married daughter with two
grandchildren living in Minnesota & an adult son living in Santa Cruz
Type of illness:
Indolent BCell Lymphocytic Lymphoma, stage 4, with 20% bone marrow
contamination
Diagnosed: December 2002
Doug speaking to the Spring 2006 TNT Marathon Team
February, 2004
Having now been involved with Team In Training for two years, I will say
that my life prior to my diagnosis seems like a million years ago. A brief
recap of me before 2000(when I started feeling sick) or 2002 (when I got
my diagnosis) is: I was born in a small town in Northern California...
and I came to the Bay Area for the first time in 1968 for college. I was
married to a Palo Alto girl in Sunnyvale, lived with my family for 25
years in various places throughout the West Coast before we divorced.
I have raised two wonderful children, worked for a couple of major international
corporations, was successful in many things that I did, grew older and
looked forward to coming of an age to retire and relax. By 1998, I was
living in the Santa Cruz area with my adult son. I had a home near the
Capitola beach, and was starting to gray in the temples. Rock 'n' roll
was still a part of my life, communicating professionally about quality
processes, initiatives, and purposes my career, and looking forward to
"what’s next" was my outlook.
In mid-2000, after a bit of strange medical situations, I noticed a lump in my neck. For the next 18 months the doctors (folks with access to state-of-the-art medical processes, many of them at Stanford) looked at my neck (and tested and tested) as the lump grew and others appeared -- the word tumor wasn't yet a diagnosis (in fact with all their wisdom and my respect, they assured me that “it” wasn’t a tumor, or at least, it wasn’t malignant). More and more doctors were questioned but nothing definitive was identified.
In early 2002, after a number of years with my employer, the company was purchased and the crew encouraged to find new employment (for me it wasn’t a good time to be laid off). With the economy slumping and unemployment statistics rising, there was a span of time that finding a new job just wasn't successful...and besides, by this time, I wasn't feeling like working. I had a larger double chin than was normal for me, I slept very little because I wasn't able to lay down comfortably because of the tumors (I called them my golf balls across the small of my back), and I couldn't breathe well.
With the unemployment, came a change in my medical plan and so my medical history was moved to the VA and fresh eyes took over the investigation of "Doug's situation". By August of 2002, the ENT doctors (ENT because this all started in my neck) suggested that I allow the words Cancer, Tumor, and Lymphoma into my vocabulary. It took another four months for a diagnosis to be positively made. On December 20, 2002, on my phone machine, I got the word that I had cancer --Indolent BCell Lymphocytic Lymphoma. My lymph nodes were all sick, the tumors were the nodes swollen. Because lymph nodes are all over your body, it was determined that the cancer was all over my body ... but only organ it was contained in was my lymph system ... but it was stage 4 (the last of four stages) and there was 20 percent invasion of cancer into my bone marrow. I received the words –incurable, four years, but they could make me comfortable.
I went numb. In the course of the previous 5 months of discovery, I'd sold my home in the Santa Cruz area and moved to Palo Alto near the VA hospital. The cancer was indolent (AKA slow growing) so beginning treatment was delayed until mid-February. In the meantime, I overdosed on information from the internet and books, while calling support services wherever I could find them. The American Cancer Society suggested that I call the Leukemia & Lymphoma Society (LLS) and it was then that I learned of TNT. TNT rapidly became my new 'family'.
The first six months of 2003 was a blur for me, the shock and then the chemo (this was my first time around, and it looked nasty)-- five months of it -- obliterated any thought of normalcy and any plans of the future. My first round of chemo was a treatment “cocktail”…..four chemo drugs were mixed together (called CHOP) and served with a fifth drug, Rituxamab (Rituxan was a breakthrough drug developed with funding by LLS). As I got accustomed to the "Poison In, Poison Out" cycles (8 three week cycles. A cycle was 6 days of chemo meds in, then wait a week to let it exit, then wait a week to let the body recuperate from the previous 2 weeks…..ha! sure, recuperate. Let the body “bounce” back to normal --- hardly….I would later in my journey be told that it takes between 12 and 18 months for the toxic drugs to clear your body --- so I was getting this poison dumped in on top of each other….by cycle 8, I was really “hopped up), on the good days I might attend an informational dinner provided by various pharmaceutical companies and sponsored by LLS.
In April of 2003 at one of these dinners, I was told of a medicine that was just on the horizon. My form of cancer does not lend itself to the use of radiation. My cancer is throughout my body and to radiate would mean that all areas of my body would have to be radiated at once....so traditionally it would be only chemo that was the treatment for this Lymphoma. On the night of this dinner, I was told a story of how research was finding a way to place a molecule of radiation on a molecule of chemo and when introduced into the body of a Lymphoma patient, the radiation was delivered to the sick cell without affecting the other cells in the area receiving the "blast" -- it was a breakthrough treatment called Bexxar. The length of remission was at least four or five years. The funding from LLS had provided the money for there search. I was amazed but it was down the road and would probably be years before FDA approval.
By August 2003, I was off the chemo and by February 2004 I was told that I was in remission. By this time I had convinced myself that that meant I had beat the "sucker". Life was looking better. I decided to go back to school and get ready to return to the labor force. By July 9, 2004 I was on top of the world again...my first grandchild, JJ (John Jeffery) was born. I was able to travel to Washington state to meet my legacy (and boy was he cute).
September, 2004
In September, I went in for my quarterly checkup. I was to find out that
the tumors were growing again. This was a shock/it wasn’t suppose
to be – I was in remission, but the doctor encouraged me with the
information that in the 18 months that I had lived from my diagnosis,
8 or 10 new protocols had been found and there was a better arsenal to
fight (and again, LLS was funding a lot of this research).
Starting in October, I had chemo weekly (for the second time), getting me ready for the bigger fight. I hadn’t responded to the treatment as I should have. The next battle might be a trauma … but I was gonna beat the “sucker”. This (next) time the chemo was just a mega-dose each time of one drug (Rituxamab), not with the four as before. I didn’t loose my hair; it was ok.
By January 2005, I was doing ok and the treatments were over. I had my CT scans and other tests and waited. In March I got the word – it was sweet – no nodes were large enough to be considered tumors and my bone marrow appeared clear. Ok, now we’re getting somewhere. Well, not really, I wasn’t the doctor and I didn’t know all the indicators. The signs were that I had responded to the chemo but I wasn’t in remission. Something else had to be done. The cancer had to be put to rest for good but how.
By April, ’05, the news was favorable. The FDA had rushed the approval of Bexxar (the future drug heard about 18 months before) and my doctor had submitted me to be one of the first in the VA system to get it. It got approval. By May I was preparing for my third chemo but this time it would be a simple radioactive series of shots over 10 days, being sequestered for 14 days because I was “hot” and would set off Geiger counters etc. I had to go to Stanford for this one … I went. By June, I got the word, everything had worked. In the studies, it appeared that the patient would be cancer free for 4 to 5 years.
November, 2005
Hey, it’s winter. Everyone gets a cold and has the flu in winter.
With a compromised immune system it needs to be checked, so it was. First
thing noticed was that my heart was inflamed. A CT scan was done to see
why. There it was two “rogue” nodes turning into tumors pressing
on the back of my heart and one “rogue” node in my groin.
So much for Bexxar. The heart thing was fought with antibiotics but then,
the feet and lower legs started swelling. I’d heard of secondary
problems, now I was getting some “catch up” situations …
was this all of my secondary problems at once. These secondary problems
needed to be treated before the nodes could be addressed. More drugs,
more swelling, no shoes fit, no pant legs would fit. Time was ticking.
I had to prepare for another battle with chemo by early next year (2006).
February, 2006
I hadn’t started my treatment because there are some indicators
about my heart that they needed to checkout before they proceeded. The
swollen legs situation needed to evolve into something that could be addressed
with a direct drug...there were 2 or 3 potentials that the swelling could
be and so they couldn't do anything until they knew. If they did the wrong
thing there was a potential that it could have adverse effects on the
heart or the cancer. So, I got my new prescription - a Lasik (yes, a pee
pill). I could live with this option, the potential partial remedy for
the swelling was welcomed – I could walk a little. For the next
cancer treatment, more tests and - yes, the new CT scan confirmed that
all the nodes were beginning to wake up and enlarge. More tests –
starting with an echocardiogram to see what state my heart was in and
could I move on to the next chemo drug. Then a series of exotic lab test
and finally to end up with my oncologist to have my 6 month bone marrow
biopsy...
March, 2006
People began to notice my voice gravely again (it hadn’t been that
way for 3 years),so next was to focus on the throat. I needed a new drug
and it had to start at that moment. There was a new clinical trial at
Stanford and I would be in the study. This drug is called Bendamustin.
There might be loss of hair but that should be all the gross side effects.
I got the bad news and the good. Bad news - it would be another 6-month
tour of chemo. Worse news - it had been determined that I respond early
to chemo drugs but there is a small percentage of Lymphoma patients that
don’t hold a remission. The good news – with drugs like Bexxar
and Bundemustin it was becoming apparent that my cancer was now a chronic
disease – not directly terminal. The bad news – my fight might
be a round (5 or 6 months) of chemo every 8 or 9 months until the right
“cocktail” was found to put the cancer on hold. The good news
– my doctor informed me that she felt comfortable to tell me that
with the drugs available now, she could now keep me alive for another
10 plus years – if something else like a heart attack didn’t
get me. The best news – my grandson, now living in Minnesota, was
scheduled to have a sibling around Christmas. My objective was to be available
to meet that baby in December.
August, 2006
Well, there I was. I think what I had to report about that last chemo
was – if you gotta go through hell to get a good result, then my
miracle drug had been found. This chemo (fourth time around) was the worst
but hey, it was August and I was going in for my final CT scans and tests.
I was really feeling ok or should I say good. I had also made an appointment
with my travel agent to plan a trip to Minnesota for December (that’s
where grandson JJ and his parents live and where the newest member of
the family would be born).
The Roller Coaster Ride Continued
It was September and I was meeting with the doctor to get the results
of my first quarter after remission tests. You probably knew when I was
there because of the loud noise coming from the direction of the VA hospital
in Palo Alto. I was told a lot of things that day but I didn’t hear
that much, just – no tumors, no trace of cancer, go do your traveling.
I hoped the next thing you read from me was my travelogue about my trips
to my grandkids and elsewhere. But it wasn’t to be.
The week before I was to leave I started getting a stomach ache. The pain got worse and worse, and soon was nothing like I had ever experienced. In the ER they didn’t know what to do but to put me in a bed and observe to see what would happen. Morphine for 3 days was interesting and the tests were nothing but guesses. Maybe it was a gall bladder, not!, maybe it was an appendix (if it wasn’t already gone), maybe…..maybe…..All they could do was to watch my body that had just finished the chemo (meaning I had very little immune protection). Finally there was something identified – a blockage in my intestine. The only thing that could be explained…..I was constipated and the blockage was my bowels allowing that mass to grow and because I didn’t have an immune system, the mass was taking over. I didn’t get to go to Minnesota.
September, 2006
A few more weeks was what I needed. The body fought its way back to a
normal level. A depression set in because I knew I was now experiencing
what the doctor had called the secondary (or the “other” situations)
medical problems that showed that my body was taking a beating. I thought
of heart problems, bowel blockages, artery constraints, and other…..so
many others that were starting to show themselves. Some that I would not
believe could happen – not with modern medical science.
The doctors now informed me that I needed to resolve myself to the fact that would have to live my life quarter to quarter. I focused on the fact that I would live for 3 months and take my tests. If the tests were good, then I could treat myself and plan to live for another 3 months. This was my version of literally living “one day at a time” and with no future plans from there. I knew that this was doable because I wanted to be around. As I started to say “I can live with this” and the little man on my shoulder would remind me “that’s the way you gotta live”.
The Travelin’ Man
Out of the hospital and I was feeling good. I would take a week in late
September and travel to Eastern, Oregon to visit with my sister. Then
I took 10 days (first 3 with a friend to see if I could do it) and went
to Washington, DC. October was closing out and it would be time for another
round of tests. I had never made it past 9 months without a relapse….I
got scared. I made a quick trip to Minnesota to see my grandson and his
mother (my daughter) as big as a house with the new baby. I came home
and went back in for the quarterly tests. Everything came at me fast and
furious then. On December 4th I was awaken to my son-in-law’s announcement
that Augusta Bernadette had been born. Mom and the baby were healthy –
I was an emotional mess. My tests weren’t back.
On December 16th, I got the report from my doctor – again, no trace of cancer, no tumors. On December 23rd I traveled to Minnesota to meet JJ’s precious sister. The Christmas celebration was extra sweet – Augusta was with us, “Ampa” (as JJ was now calling me) wasn’t sick for another quarter, and if you remember the first part of this bio…..December 20th had come and passed. December 20th, 2006!!!!!! On the first day to meet the oncologists in 2002, they had told me that my stage 4 cancer meant that I had probably 4 years to survive. I had past that mark and was feeling good…ready to conquer the world. And so I would make plans to just do that.
January 2007
I am soooooo thankful for the people and the programs that are a part
of my TNT family and purpose – I learned to live off of the participants’
wonderful accomplishments. The first quarter of 2007 needed me to plan
a grand celebration. I did (with TNT’s help). The winter season
was underway. I had missed the first event in Arizona because I was with
my new granddaughter but I swore that I wouldn’t miss another one
that season. I went to the Kaiser marathon in San Francisco, then the
Napa marathon in the Wine Country, and then I had to have my next quarter
tests. It was March and another quarter to plan for. The results came
in on March 9th…again, no trace of cancer, no tumors….on March
14th I was gone. I flew with the team to Italy for the Rome Marathon.
I was feeling good and the experience was fantastic. I stayed three weeks
in Italy and balanced my strength and stamina and saw everything I could.
I had a Blast. Upon returning, I planned for the next trip - making a
list of sites that I missed for inclusion with the 2008’s Rome Marathon.
As of the April I had broken new ground…..my remission had held longer than ever – I broke my 9 month barrier. I had traveled to Europe, I took care of things around home and saw what I could plan for my treat after the results of next quarter’s tests.
May 2007
I got my quarterly test results……”everything was normal,
no cancer, no tumors” and I planned for the summer.
Summer 2007
The days keep ticking on. In June my oncologist called to tell me the
good news – I had held a remission for over 12 months. That was
great but I couldn’t get happy, thing were happening to me and it
wasn’t nice. There are a lot of things to “dread” being
a cancer patient. The poking and needles are little things/nuisances but
other situations can crop up. As I’ve learned, there are four ways
a person can die during their cancer journey – first there is the
cancer itself. Then second there is the chemo that is used to attack the
cancer – its toxic material and it doesn’t leave your body
as easily as it goes in. Thirdly, there is the damage to the normal body
organs that are stressed when the cancer and chemo are in and fighting
in your body. And then, there is the emotional drain of staying up for
the challenge.
I was clear of the cancer, I had survived the chemo, and my attitude was holding but I hadn’t counted on (nor shouldn’t have even thought about) the ravages of what the four years might have done to me. As I jokingly tried to say “in June, the wheels and finders started to fall off the car”. Three separate surgeries were needed for reconstruction of damaged tissue. This was the most painful of any experiences I’d had with cancer – all I could think of was that it was putting me back together. When I needed more encouragement thoughts about my dreams and ME, I’d think about my grandchildren. Soon, the pain wore through all of that and depression was setting in. My psychologist asked me a question one really dismal, painful night (a night that I questioned was all of this fight worth it) – “What do the TNT coaches tell the athletes when they hit that “wall” near the end of the race?” That was the pep I needed. Of course, think of the athletes that were thinking of me BUT there was a better media than thought. For many hours in June and July I would stare at the individual photos on my various teams websites. The symbiosis was complete – I was inspiring the athletes and they were inspiring me. In September, the quarterly test results came back…”everything continues to hold….no cancer, no tumors.” I was also healing from the surgeries.
October, 2007
I had made my mind up…..starting then I needed to work each day
to get my body healthy to counteract all the ravages. I started on an
exercise (weight and cardio) program at the YMCA. I started feeling really
good and was ready to drop as much weight as I could and build up as much
of my body as I could. By December (3 months into the program), the next
challenge hit… Time for another surgery – remember chemo is
toxic and with the volume of toxic chemicals that were still potentially
in my body – I had become a toxic waste dump. Literally, the collection
point was where the damage kept coming back – could I have guessed
that all those chemicals would start changing different tissues in my
body? I should have known, I was aware of what Hazmat programs fought
against all the time. Now is seemed, normal cells were morphing into hedious
creations. Thank goodness I’d read all those sci-fi thrillers about
mad scientists and insane creations coming out of the labs.
At my request, the fourth surgery was held off until after the holidays and I was able to be with my children and grandchildren at my daughter’s in Minnesota. As my 3 year old grandson, JJ, announced when asked at the Christmas dinner what he was most thankful for, the unexpected was offered “That AMPA is here”. We all knew what he meant but the adults also knew how profound his statement was.
Beginning 2008
The surgery went off without a hitch and the pain wasn’t as bad
as I expected. You know something --- life is good and so is Team In Training.
Bless you all and Happy New Year.
Can you believe all of this story? In five years,
I had learned that you can’t trust tomorrow but you gotta believe
in today. Living one day at a time would be what gets you through. Just
as an endurance athlete learns that one step at time gets you to the end
of that marathon; or, one swim stroke at a time gets you to the end of
that open water challenge; or, a single pump on the peddle gets you farther
up that hill on that bike.
So I continue……..
March, 2008
The surgery healed and all was well for a few weeks into February. Then
a winter cold it and other things started “appearing”. I passed
my March CT scans – everything was clear in the cancer department.
But that cold….???? Then that blood sugar started to spike…..then
my GP doctor wanted to run some tests. So Doug says “Sure Doc, run
all the tests that you need but remember, I’m gonna be gone for
the month of March”. Doc – “Where will you be?”.
Doug – “In Italy with my athletes again” Doc –
“No you won’t….you can’t go”
If it wasn’t cancer then what was it??????? The doctor didn’t know – bloating, blood sugars out of control, etc etc……maybe congestive heart failure. OH NO!!!! So I didn’t go to Italy. I stayed home and had some tests. No, the tests weren’t showing the heart…..so we backed off on that. Next avenue – kidneys. Ok, so I better not plan on Scotland either.
May, 2008
Ok, I updated this on May 6th. I had the first of the routine two CT scans
that I have each quarter. I was a pretty good guess at what was going
on…..I didn’t have to wait 3 days for the second CT scan and
then the results. With guarded confidence – It Ain’t Indolent
BCell Lymphocytic Lymphoma but…….. My journey continued, thanks
for being with me on this ride.
The results were in….with all of my ups and downs it was determined that there appears to only be three things to be concerned with…1) the blood sugars, 2) the memory loss, and 3) the toxic waste dump. We will look at addressing these….as for the cancer? I am 24 months cancer free. Now the residual devastation teases me.
December, 2008
The story continues….. I'm now 30-plus months in
remission. I’m dealing with continuing medical corrections…. I feel good
about life because I total know what the alternative is….
Thanks to TNT – Thanks to TNT participants, my miracle family
Go TEAM!!!
Last updated: January 2009
Read Doug’s
Send-Off Story:
My Marathon Wall
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