I promised to post the speech I gave Friday night, so here it is.
Hello, my name is John Fiore from the SLOHS team. I am living proof that your efforts save lives. I am very glad to be here among so many of my heroes, and I am so happy to be able to thank you all for your outstanding effort. You helped to save my life, and the lives of many others. You have raised money to help the Leukemia and Lymphoma Society, and it is your effort that compels me to be here today, saying thank you.
Here in this room we see one response that people have when friends or family are stricken. They bond together to find solutions, to do what they can. They undertake great efforts and withstand great pains so that others can have a better chance at life. We have gone through the massive effort of raising donations in a tough economy, asking everyone we know, and some we do not, to donate to the LLS. Tomorrow, while you are walking or running the race, and you start hurting, think of the people that you have already helped with the monies you have raised, go to a peaceful place in your mind, and take another step.
When they told me in Feb.’05 that I had acute lymphocytic leukemia, I was stunned. The next day my wife and I were on our way to Stanford Medical Center, where I was treated with a cocktail of drugs called CALGB8811. That stands for Cancer and Leukemia Group B trial number 8811. Research by CALGB is sponsored by the National Cancer Institute and in part funded by the LLS, by monies raised by people like you.
F Ground is the ward at Stanford for cancer patients with compromised immune systems, and this would be home for 4 weeks or so, while they slammed me with the chemotherapies that would shock my bone marrow back into line. This was the room they first gave me;
Just kidding, this was the actual room, all to myself because of my low immunity, with a nice garden just outside.
Every six months or so a patient comes into F Ground, takes all the chemo, and for some reason, does not get very sick – little nausea, minor illnesses, generally healthy. I was that patient.
I roamed the halls of Stanford Medical with my IV pole, imagining I was in a big art gallery, looking at the artwork that lined the halls.
When family came to visit, we meditated in the meditation room.
When your life is threatened by cancer, you have time to ponder your existence and your mortality. At sleepless moments, you ask ‘Why me?’ The answer is of course, ‘Why not you?’ You ask yourself, ‘Why go through this?’ The answer is that while I don’t mind the fact that I will die, I am not done living yet.
I want to see my sons pursue their dreams, and I want to travel the world with my wife, so I needed more time. I thought if I had a few more years, ongoing research could help me keep going. Thanks to all of you and those like you, that research has given me that gift of more time.
You can walk around for hours in the hospital halls, and that is what I did, pushing my IV pole and wearing my HEPA mask
(show the mask). Since I was in an isolation room and effectively isolated when outside the room by the HEPA mask, I resolved to be this lone warrior, this monk trekking to health.
I settled into my isolation room with a laptop, and quickly tired of sending multiple emails to people saying the same things over and over. When someone suggested I write a blog I jumped on it. The blog would be my job, and I took my job seriously. For my blog profile, I used the poop catcher as a hat;
it reminded me of the hat worn by The Flying Nun on TV when I was a kid, and later it figured prominently in my stay.
The way it is supposed to be used:
I wrote about the gardens, especially the rooftop garden of the Children’s Hospital, and all the sick and frail kids in the Childrens Hospital.
I wrote about some of the experiments I performed while in the hospital. The best experiment was double Menu Day, when I tested the limits of the kitchen. Here is the menu,
As I reread the blog looking for pictures and funny stories to bring to this podium, I realized how crowded it was in that isolation room. All sorts of friends were reaching out to me through the blog, the phone and email, writing comments, offering support and inspirational quotes, and writing crazy stories and cool poems in the comments. The lonely trekking monk, me, was actually part of a large group making a push up Everest. If I wobbled toward a crevasse, many hands held me up, and with this great support, I kept trekking to this point. Here we all are again, a large group that has come together to conquer a mountain, to hold up those that need our support.
With the support of my friends and family, I did go home after three weeks, a little ahead of schedule, and then went through two more years of chemo and radiation.
Since leukemia tends to hide in the skull, around month 4, mid-May ‘05 , I wore this great-looking mask [show mask]
and was strapped to the table for cranial irradiation. I like to wear the mask every now and then, it makes me look like I am going fast, but kind of freaks out the neighborhood. [put on mask]
When I asked the doctor about side effects from cranial irradiation, he told me ‘Oh, you will be stupider, but you won’t notice.’ What was his name?
The radiation did strange things to my hair
When it all fell out, I got some new headgear
And when the eyebrows fell out, I just pasted on some tomato hornworms I found in the garden.
My friends joined in at a big BBQ and changed their eyebrows – these are Bushy eyebrows
I think most of us who have had cancer live with the fear that the cancer will return. I know I did. Last July ’08, I was training for the Nike half-marathon as an honored teammate of the SLOHS TNT team, when leukemia returned. I had relapsed. This time, I would need a bone marrow transplant.
Twenty years ago, I would have had no chance of getting a bone marrow transplant. At age 53, they would not have even tried it, as such a person could not withstand the rigors of the entire procedure. Thanks to continuing research funded by efforts such as yours, the regimen called CALGB9511 was ready to save me.
When you are preparing for a bone marrow transplant, the first thing is the induction phase, just as when leukemia first struck, to stop the leukemia from progressing while you wait for a donor. This is 3-4 weeks of intense chemo.
Back I went to Stanford, back to F Ground, back in time two and a half years. Thanks to new drugs, I was healthy, but the anxiety of finding a bone marrow donor was ever-present. Some patients die while waiting for a donor match.
After the 4 weeks of induction, I went home, and waited for a donor. On August 14, I found out that I had a great match in my sister Lisa. She is an identical twin, so my sister Leslie was my spare! I had some time to kick it, so I went to a music festival, and then to Yellowstone for some hiking in the backwoods with a friend who is a doctor, and a pirate.
When everything was ready, I went back to Stanford. This treatment was much tougher than the first go-around. This time they kill the bone marrow and completely replace it, starting with out-patient radiation and some very nasty chemo four days before you go into the hospital.
Here I am in the total body irradiation booth. Behind me are little dinosaur stickers that kids have put up while they are being irradiated, and that always inspired me to be strong! Four days of this and I got glowing reviews!
Here is my sister Lisa donating her bone marrow through the relatively painless apheresis method.
Thank you Lisa, you are a superhero.
This is how I looked just after I checked into the hospital, and 5 days later, when the chemo and radiation started to slam me.
I received that bone marrow transplant, a simple transfusion, on September 30, and then the effects of the chemos and the irradiation took hold. I lay in the bed for almost 20 days, fed by an IV of what looked like chicken broth, unable to eat and barely able to drink, barely alive with no white blood cells, red cells or platelets.
On the eve of the Nike marathon in San Francisco, Oct. 18, my wife and son were at the pasta party with the TNT teams. She felt guilty for being there and not at my side, but there was nothing she could do for me. The Central Coast team cheered when my picture came up on the screen. Later the emcee called for a few moments of silence and reflection about the reasons they were all there.
Back in the hospital that very night, the doctors came and told me that my blood counts had ticked up slightly. The bone marrow transplant was engrafting and my new marrow was making blood cells. I would probably live.
I would live to enjoy Thanksgiving with my family.
I would live to visit Zion and Bryce Canyons with my brother.
I would live to hang out with my family on Penny Lane, and roam around Scotland and Ireland.
I would live to visit my Mom for her 86th birthday.
I am now cancer-free and leukemia will not kill me. Once again, thanks to all of you and those like you that have made the efforts to support this worthy cause. Some day I believe this disease will be cured with a shot in the doctor’s office, a shot that will have been created from research funded by people like you that come together and make a great effort.
I did have to change the name of my blog
I would like to thank my fantastic wife Dana, who has been my primary caregiver and who made many sacrifices to keep me going, and the medical teams at Stanford Medical Center and at the Oncology Hematology Group of San Luis Obispo, for keeping me alive.
I have been on this journey now for almost five years, and I have met people that fought valiantly against this disease, but were not lucky enough to find a donor match, and died. So please, if you can, sign up for the National Bone Marrow Registry. Donating bone marrow is now a nearly pain-free procedure, and you can save a life. Again, thank you to all the heroes out there who helped save mine, and good luck in tomorrow’s race!
Thank You, and GO TEAM!
That is the speech and all the slides, just about as I delivered it. The remote for advancing the slides failed me because of distance, so I had to signal (slap my ass) one of the TNT people (Stephanie, thanks Stephanie) to advance the slide. In the end it all worked out. If I can clean up the audio portion of the video I will post it, but probably not here, just a link to it.
