Age: 56
Family: Adult married daughter & adult son living out of state
Type of illness: Indolent BCell Lymphocytic Lymphoma, stage 4
Diagnosed: December 2002

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 in1968 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 was20 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 2002 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. As I got accustomed to the “Poison In, Poison Out” cycles, on the good days I might attend an informational dinner provided by various pharmaceutical companies and sponsored by LLS.

In April of 2002 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 is 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, 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 time the chemo was just a mega-dose each time of one drug, not 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 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 over10 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.

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 … 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, no pant legs would fit. Time was ticking. I should 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 another6-month tour. 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 – it might be a round 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 have 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 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 today 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, 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 trying to fight the mass but 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.

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. 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 cam 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-laws announcement that Augusta Bernadette had been born. Mom and the baby were healthy – I was a 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. 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 two and a half weeks in Italy and balanced my strength and stamina and saw everything I could. I plan for the next trip and I’m now making a list of sites that I missed for 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 have traveled to Europe, I will take care of things around home and see what I can plan for my treat come the results of next quarter’s tests.

May 2007
I got my quarterly test results……”everything looks normal, no cancer, no tumors” and I plan for the summer.
Summer 2007

The days keep ticking on. In September, the test results have come back…”everything continues to hold….no cancer, no tumors.

You know something — life is good and so is Team In Training. Bless you all.

Thanks to TNT – Thanks to the TNT participants, my miracle family
Go TEAM