The Things I Missed

Wow, today marks 11 years in remission for me from Hodgkin's lymphoma!  Here is a picture of me on chemo in 2002!  ;^)

This past Saturday, Team in Training did the Silent Mile ceremony for the Spring Team.  I was out of town, and so wrote something for Kate to read to the gathering.  Here is what I wrote for the team: "The Things I Missed."

Dear 2014 Spring TNT participants:

I was thinking about all the things I missed these last 11 years because of lymphoma. I never got to hike up Tumbledown Mountain in Maine with my wife and good friends, a trip we had planned to do together. I missed my friend’s fiftieth birthday party on the same excursion.

I would have loved to have been present at the birth of my granddaughter, to hold this sweet little bundle that day, filled with instant love for her. But I couldn’t, nor could I celebrate her birthday each year, watching her grow a little bigger each time.

I never got to go to Alaska to do that incredible marathon for Team in Training. I also never got to do marathons in San Diego and Arizona, and half-marathons in Nashville, Seattle, and Hampton for the same great cause – to raise money to help find and fund a cure.

My wife and I always wanted to go to Glacier, Grand Tetons, and Yellowstone National Parks, and also to Alaska. But we never got to any of those places together, all because of that lousy Hodgkin’s lymphoma diagnosis in 2002. Too bad, because it would have been amazing!

In 2007, my sister was diagnosed with breast cancer, and she died in May of 2011 from this awful disease. I wish I could have been there to give her some support and comfort. Likewise, I wish I had been around to celebrate her 60th birthday along with the rest of the family.

Speaking of birthdays, it would have been nice to have been around to celebrate my wife’s birthdays, and our wedding anniversaries, and Christmases. It must have been lonely for her.

And, it would have been amazing to have walked in the Susan G. Komen 3-Day for the Cure 60 mile walk to honor my sister’s memory – and to sleep in a pink tent! I hated to miss that!

Those are just a few of the big moments that I missed in the last 11 years. And when I think of all of the little day-to-day moments of joy that I missed as well, it is almost overwhelming. These little moments may not be earth-shaking, but they still help to weave the rich and colorful fabric of our lives. I missed so many things!

Now, the statements about the things that I missed are false. I actually did do all those things, and many, many more as well. But had my 2002 cancer diagnosis turned out differently, I easily could have missed all of them. Because of effective research on my type of cancer, conducted years before, I had such a great chance to survive. However, many others don’t have that same chance. You, by your sacrifice and hard work, are giving hope to others who don’t have much now: giving them the chance to build their own great memories, just as I was able to do!

I want to thank you for all you are doing for this cause, and for tackling such a tough challenge. I wish I could have been here with you today at the Silent Mile, my 11 year remission anniversary weekend. But up in Pennsylvania, I will be (silently) cheering for you and thinking of your efforts and sacrifice. Thank you so much!

Art

Team Soup's Message

I've blogged about young Campbell, AKA "Soup," in my last couple of posts.  She is a local girl, soon to turn eight, who has leukemia.  I have no doubt that she has endured some awful things in the last year and has gone through a lot of misery.  But she seems strong and upbeat.

About a month or so ago, she posted a short video message to Team in Training participants.  I wanted to embed the video but since I don't have a Facebook account, I cannot.  But I can provide the link to the video.

When I watched it last month, I found it inspirational, and it brought tears to my eyes.

Nothing Like a Girl's "Sweet Sixteen!"

Wow, three weeks since I posted!  So much for my goal of posting in this blog at least once a week.  I was doing pretty well, though, and will get back to it - promise!

Today, I am going to write about my Team in Training friend Nicki's "Sweet Sixteen."  No, she is not a 16 year old girl, but it is 16 years just over a week ago since she survived lymphoma.  She had a 5% chance of survival IF she got a bone marrow transplant, and a 0% chance of living without the transplant.  Someone - a total stranger in a state far away - gave her the miracle of life that February so long ago, and that stranger's and Nicki's lives will never be the same.  And they are strangers no more - Nicki has met the lady who breathed life into her, and they have become friends.  In a way, they are like mother - daughter, and they try to get together each year.

Nicki has made the most of her 16 years of extra life.  She graduated from college.  She's had a career.  She has been the loving "mother" to many pets and made a huge difference in their lives.  She's gotten married.  She has been a friend to many.  She's traveled a bit.  She's been an inspiration.  And she has become a marathoner and half-marathoner many times over, running events for the Leukemia and Lymphoma Society and a few on her own as well.  Here we are almost exactly a year ago before the start of the Shamrock Half Marathon.

Nicki is now training for yet another half marathon, The Nike Women's Half-Marathon, and raising more money to celebrate her "Sweet Sixteen" in style.  Want to make a donation in her honor?  Go here. How about 16 bucks?  Want to do something else to help?  Register with the national bone marrow donation registry.  It is simple and painless.  Maybe someday, this simple action will be part of saving another person's life.  How amazing would that be?  Blood cancer survivors like Nicki and me can never donate blood or marrow to anyone, but if you are healthy, you can.

Six years ago, Nicki's sister had special wrist bands made in the purple, green, and white of Team in Training to celebrate Nicki's 10 year survival mark, her "Decade of Strength."  Nicki gave me three of these and for the last year and some months, I've worn it every day.  Originally, I only wore for special occasions because I wanted the one I had to last, but once she gave me the others, I started wearing one every day.  I still have two left.  When my current one breaks, I'll save the last one for special events.  But last year being my 10th survival year, it was a real honor to wear Nicki's 10 year wristband every day.

In the past three years, I've had three friends and my sister perish from cancer, all well before what should have been their time.  So there is still plenty of work to do to find a true cure.  But amidst the sadness of losing loved ones, it is great to see examples like Nicki, surviving and living strong against odds that were so stacked against her 16 years ago.

So, happy "Sweet Sixteen," Nicki.  There is nothing like a girl's "Sweet Sixteen!"  And there's no one like you!  May you give us many more decades of strength, and of inspiration!

My Silent Mile Message

On Saturday, our local TNT groups will do the Silent Mile once again.  I wish I could be there, but I cannot be.  So I wrote something for Kate to read to the group.  Here it is.  If you, too, are engaged in Team in Training (or some other cure for cancer fund raising) right now, then this is for you as well - so, THANK YOU!


Remission Accomplished! In December 2002, nearly exactly 10 years ago, this was the message I received from my oncologist. For anyone going through treatment for any type of cancer, this is the news they want so badly to hear. Doctors are reluctant to say “cured,” but they will say “remission,” or “NED” (No Evidence of Disease). These were among the sweetest words I have ever heard – sweeter than if I were to learn that I had won the half a billion dollars Power Ball this week (although that would be a close second).

Chemotherapy is tough. In my life to date, it is the hardest thing I have gone through. It was tougher than my three marathons and three half marathons – even the marathon in Alaska in a pouring, cold rain with mosquitos the size of small airplanes. And keep in mind that compared to some other cancer patients that I have heard about, my cancer treatment was like a first-class vacation on a tropical island – complete with one of those drinks with the little umbrella sticking in it.

I am very lucky to have reached 10 years remission from Hodgkin’s lymphoma, and I plan to keep on going. I feel like I have a lot of living yet to do before I see my last sunset and hike my last trail. Yet, I know that there are no guarantees. I know people who say, “If I had to go through chemo again, I would not do it.” I don’t feel that way. I would not want to do it again, of course, but I would. But if I ever have to, I hope that it will be easier the next time around because of people like you – people raising money not just for a cure, but for a cure that doesn’t make you feel so ill that sometimes you don’t focus on getting through the day, but just through the next minute. Where your stomach does flips so spectacular that a Cirque de Soleil performer would turn green with envy. Where your brain is so foggy that the light from an explosion from a Chinese fireworks factory wouldn’t cut through the fog. Where you go into the ER in the middle of the night, and the doctor suggests that dynamite just might be required to get things moving again. (“Give me the paper to sign and light the fuse!” I told him).

From this cancer survivor, and on behalf of the thousands going through cancer therapy every day, thank you for what you do. Thank you for having our backs! Thank you for racing for a cure!

A Great Honor

I've done a lot of things over the past seven years for LLS and Team in Training: five events as participant, and a sixth season as a mentor.  Speaker at numerous meetings to recruit volunteers and at kick-off.  Cheering at events.  Light the Night three times.  But until Saturday night, when I addressed the "I Love the Tavern Triathon" Team, I had never been the honored speaker at a TNT inspiration dinner.

If you have attended an inspiration dinner for the Team, you know they can be pretty massive and inspirational events.  This one was a lot smaller.  Instead of addressing hundreds of participants, there were 15.  But that was fine.  It was my great honor to speak to such a fine and dedicated group.

So what did I say in my 10 minutes of fame?  I talked about how I found out that I had Hodgkin's lymphoma 10 years ago, and what the treatments were like.  I tried to interject a little humor by recounting my story of the ear hair that wouldn't die.  I spoke of why it is so difficult to cure cancers, and although I was a lucky survivor, there were many more who never make it.  I spoke in particular of three people in my life who have passed away in the last 18 months: my friend Judy from multiple myeloma in January 2011, my sister Ann from breast cancer in May 2011, and my friend Faith from Hodgkin's lymphoma this past February.  So there is plenty more to do before we can consider cancer defeated.  Then I closed with these three thoughts:

1. You never know if and when your life will change radically, as mine did 10 years ago.  So enjoy the good times while you have them, and seize as many days as possible - starting with completing the triathlon the next day.
2. Someday, all cancers will be curable or at least manageable.  When that day comes, each of them can smile, knowing that they all had a part in that.
3. As a 10 year cancer survivor, they had my sincere thanks.  I can't thank the people who figured out 30, 40, or 50 years ago how to get most people to survive Hodgkin's lymphoma, but I can thank them.

I don't know if this fine team was inspired by my talk, but I am sure inspired by their hard work, dedication, and courage to tackle a triathlon while trying to make a difference in the war on cancer.

Silent for Ann and Faith

This morning was the Team in Training Silent Mile ceremony.  I am always inspired by this - always!  About eight or nine of us survivors spoke, relaying tales of courage and endurance.  In particular, Robin's tale of fighting back after the loss of her right leg two years ago to cancer and Ed's story of his continuing fight with melanoma (after dealing with leukemia at 19 and two other cancers since) were moving.  As Ed put it, tongue in cheek, "cancer can be the gift that keeps on giving!"  My talk was easy, for 10 years ago today, I was preparing for my first day of chemo the next day.  I tried to prepare mentally that June 2, that beautiful Sunday 10 years ago.  I took a little hike in the mountains, knowing it would be the last time for a while, and wondering just a bit if it might be my last one ever.  There is no certainty or guarantee when dealing with cancer.

We also paid tribute to the Tahoe cycle team and the San Diego Marathon team, in action this weekend on the west coast.  After the talks, we walked, ran, or biked the first mile in silence.  It is a time to reflect on why we do Team in Training, and those who have fought the good fight but are no longer with us.  As I walked, I thought of my sister Ann, dead from cancer one year this past Wednesday.  I listened to the wood thrushes singing in the woods along the road.  She loved this bird's song, as do I, and I felt the connection to her.  I miss her so much!  There are days I feel as if we just haven't talked in a while - after all, we had lived nearly 500 miles apart.  And then the reality hits, and hits hard.  The reality that as much as I wish, I will never see her again, at least not in the flesh.  All because of cancer, something that started with a single cell gone haywire that could not be supressed.  It sucks.

I also thought of my friend, Faith, who died in February.  She was so young, 42 or 43.  She died from Hodgkin's lymphoma, the same thing I had 10 years ago.  She should have survived.  She should still be here.  90% of Americans with Hodgkin's survive 5 years.  I've lived for 10, so far, and hope to keep going.  Faith lived only for three years.  Faith came to one of our Silent Mile celebrations two years ago, and she did a mission moment for me on a bitter winter day's training in 2010.  She was a special person, so gentle and caring, and missed by many.  One more grieving family.  One more too many.  So for the last part of that mile, walking along with a little running for the first time since the 10K two months ago - when I wore Faith's photo on my shirt - I thought of Faith and how badly she wanted to keep living and enjoying life.  It is so unfair.

In the afternoon, Faith's dad and sister came up from North Carolina and had a memorial get-together for Faith's Richmond friends.  While I was there, I learned that they will have a Light the Night team on October 27 in memory of Faith.  Faith was so proud of the awesome job she did with her LTN team "Faith's Hope" in 2009.  I walked with her on that team, and I walked with her the next year with Light the Night.  So I plan on walking on Faith's memorial team this fall.

Good Luck, Lake Tahoe Cycle Team!

To the Tahoe TNT Cycle Team, Coaches, and Mentors:

I had lunch with your Team Virginia Coach, Susan, today, and she was telling me about your upcoming race, er, ride around Lake Tahoe this Sunday, June 3. It got me thinking about what an adventure the group of you is in for – 100 miles around a beautiful lake, all the ups and downs, peaks and valleys, tremendous scenery. You’ve trained so hard for this race, er, ride! You will need all of your training, grit, and determination to complete 100 miles in California on Sunday. It should be a wild ride, eh? All for a great cause – to help those enduring cancers, and to help develop more cures for blood cancers specifically, but for all cancers ultimately.

As Susan talked about your race, er, ride, it got me thinking about another more distant June 3, one that is important to me personally. For exactly 10 years from this Sunday, June 3, 2002, I took my very first step into the chemotherapy room to get my first batch of chemo for Hodgkin’s lymphoma. I had not trained for this. It was a surprise, a bolt from the blue that had arrived just weeks before. I didn’t feel ready for it. I didn’t want to get chemo – in fact, I dreaded it that first day, and that first week. As in your race, er, ride, there were lots of ups and downs, peaks and valleys for the six months I had to get treatment. Not much nice scenery though – leaning over the water in a toilet bowl is not quite a scenic as Lake Tahoe should be. At least I sure hope not, for your sake! But like you, I needed grit and determination – that feeling that I would take it one day, one hour, one minute, or if need be, one second at a time to get through it. That is what cancer patients need to get through such an experience, if they are lucky.

I was one of the very lucky ones. I survived, and am happy and grateful for this. And I am particularly grateful to have lived 10 years now, to the point where the awful experience of chemotherapy is greatly faded. But I also feel sadness when I think of some others who didn’t have my luck: your Coach Susan’s dad several years ago. My good friend, Judy, who died in January 2011 just four weeks after her multiple myeloma diagnosis. My dear sister, Ann, deceased exactly a year ago today after her four-year difficult fight with breast cancer. My friend Faith, dead from Hodgkin’s lymphoma – the “good cancer" – this past February.

You can see that there is still plenty to be done, and you are out there helping to do it. I wanted to be sure to thank you for all you have done and are doing, and to wish you the very best on June 3. I’ll be thinking of you, cheering you from afar, and wishing you all have a great race, er, ride! This 10 year survivor salutes you!

Go Team!
Art

How Can We Improve the Mission?

I am involved with a large group of Team in Training participants and alumni to come up with ideas to improve the TNT experience for people.  We split into sub-groups, and mine involves the mission.  How can we make the mission more real to people?  How can patient honorees interact more with participants to improve their experience?  What should we do more of?  Less of?

If you have ideas, I would love to hear them.  We are in brainstorming mode right now.  All constructive ideas are welcome.  You can comment on my blog, or just email me directly - my email address is on my profile.

Thanks, and I hope to get some good feedback to help our improvements to take wing!

Silent Mile

Today, Team in Training had its Silent Mile Ceremony. Although I am not officially on the team, I was invited to come and speak. It is always wonderful to see the various teams - cycle, run/walk, and triathlon - in one place. In this case, it was the newly formed Summer Team. However, a couple members of the Spring team were there as well. One of these is my fellow-survivor Nicki, who has a big "birthday" coming up Monday. Nicki will be the subject of Monday's post. She and I will both be running the Shamrock Half Marathon in three weeks.

The last time I was at a Silent Mile for me, it was a big day - my birthday back in July! Yesterday, we had people present who have survived every one of the four major blood cancers - Non-Hodgkin's lymphoma, leukemia, Hodgkin's lymphoma, and multiple myeloma. One survivor, Paul, is currently undergoing chemo for CLL, had to get radiation for a tumor behind his eye, and is looking into a very risky bone marrow transplant, but he has not given up on the idea of riding 100 miles in June at Lake Tahoe! How's that for true grit? I always feel inspired by the stories of the survivors, and their bravery in facing their never-fun treatments.

After the speaking was finished we posed for a group photo, and then we were off to do the first mile in silence as remembrance of those who have lost their fight with cancer. 12 miles was on the training schedule for Shamrock yesterday, and that is what Nicki was doing. But I had a meeting in Virginia Beach at 2, and had to leave her after a mile and a half. I felt bad knowing she would be running alone that long. Of course, so would I later, but I would have rather run with Nicki. Along our route for that first mile and a half were signs reminding us of the mission, and I will share a few photos of these. Later this week, I will report on my long run Saturday afternoon in a wildlife refuge through what felt like a gale.

Faith in a Cure

(Note: please see my post of February 26 about the sad news of Faith losing her battle)

I've written before how Hodgkin's lymphoma is one of the more curable cancers, and is sometimes called the "good cancer." Well, if you are like me, a nearly 10 year survivor from this disease and living strong, I suppose you could call it a good cancer, although even that is a bit of a reach. For others, though, it is not a good cancer by any stretch of the imagination.

One of these folks is my friend Faith. She had stage 4 Hodgkin's lymphoma starting almost exactly three years ago. It was in her spleen, bones, and lungs. She went through many hellish treatments, raised an outrageous amount of money for Light the Night in 2009 with her Team "Faith's Hope," and went into remission near the end of the year.

But think about how difficult it is to kill cancer. You have maybe a billion cancer cells in your body if you have detectable cancer. If you are stage 4 like Faith was, maybe you have several billion malignant cells. During treatment, every single one of these cells must die. Let me emphasize that again - every single one must die! If even one such cell, lurking somewhere in your body, survives, it will begin to divide. And divide again. And again. Repeat that process enough, and suddenly you have a tumor - probably undetectable. Some cells split off and travel through the lymph or bloodstream, lodging in some hospitable spot deep in your body. Another tumor starts up. Then another. Before you know it, you are not feeling so well and get it checked out. And suddenly, you realize your days of being cancer free are over, at least for now. And the worst of it is, these tumors are probably dominated by cancer cells that are resistant to chemotherapy, since they came from cells that survived these harsh and miserable chemicals.

That is what Faith learned recently that she is facing again - stage 4 Hodgkin's lymphoma. And this time, her treatment will consist of a stem cell transplant after ruthless chemotherapy to destroy the cancer and her marrow. Right now, Faith is just trying to get through each day and night - the fear of the treatment, the misery of feeling so sick, the horrible migraines that she is experiencing. Her days are dominated by long and difficult medical appointments. I feel so badly that she has to go through this once more. It is very unfair, because once should have been more than enough.

I ran tonight, going four miles, trying to prepare for the Shamrock Half Marathon in just over a month. Ironically, just two years ago, Faith was there at this race with me and some other friends cheering for the runners. Running rarely feels easy for me. I struggle with it at times. But as I ran along tonight, I kept thinking of Faith and how difficult things are for her right now. Facing what she is facing makes any reasonable run easy by comparison. I wrote the other day how running by itself doesn't cure cancer. How I wish it could, because I would be willing to run a lot of miles if it would cure Faith and some other pals I have going through this nasty crap right now. But life doesn't work that way.

Even so, I have faith there will be a cure for Faith. She is determined to have her life back once again. It won't be easy - far from it. It will actually be hellish. One day at a time, Faith. One hour, one minute, one second at a time if need be. Stay strong, stay positive, stay brave, believe you will get through this, believe in yourself and in your doctors. I have faith in you.

As you go through difficult times in your life - unpleasantness at work, problems with kids, relationship angst, money issues - or even a tough run on a day you don't feel much like running - think of people like Faith and what their day is like. For most of us, our problems pale in comparison to someone facing stage 4 cancer. And if you are so inclined, pause for a second and say a little prayer for Faith - that her doctors will be wise, that she will stay strong and brave, that a cure will be hers someday soon, and that she will have her life back for many decades to come.

Silent Mile Message

The Team in Training Spring Team has formed and is having a silent mile, like the one last July, today. Unfortunately, I can't be there, but I asked Kate to read something from me. Here is what I submitted to her.

I wish I could be here today to say hello and more importantly, to say "thank you." Yesterday marked a big milestone for me, my nine year remission anniversary from Hodgkin's lymphoma. Yes, nine years ago, I was celebrating finally being done with six months of chemo, one of the hardest things I have ever been through. I was eagerly awaiting a CT Scan in a few days, which would turn up no evidence of cancer. It was a thrilling time, but also a little sobering. A couple weeks before, in the chemo room for the last time, the man next to me nearly died when they tried a tiny dose of a new kind of chemo on him. For a few minutes, doctors and nurses frantically ran around the room like ants at a picnic. "I'm sorry," the oncologist said to the man and to his daughter after they revived and stabilized him. "That new chemo clearly isn't going to work for you, and there are no other options left for you because the current treatment isn't working at all." Imagine getting that message just before Christmas or Chanukah. Here I was, getting ready to return to my regular life and hopefully feel healthy again, while at the same time, this guy three feet from me was essentially being told to get his affairs in order. He was about the same age that I am now, which still feels far too young to die.

I've tried to do a lot of living in these nine years. Nine more birthdays and wedding anniversaries. Get-togethers with family and friends. Trips to Alaska, Yellowstone, the Grand Tetons, and Glacier National Park. Lots of great hikes. Lazing at the beach with a cold drink. Being there when my granddaughter was born. Being a comfort to my sister Ann as she fought, and lost this spring, her four year battle with breast cancer. None of this could have happened for me without research that figured out how to effectively fight Hodgkin's lymphoma, at least most of the time.

When I had cancer, I was struck by two concepts. The first was that if I indeed survived, I owed my life to people who came years and decades before me. They were the patients who suffered horribly; they were the nurses who tended to them; they were the doctors who tried new things and made observations; they were the medical researchers and the biochemists and the geneticists who figured out what would work and not work. And they were the people who provided funding for medical research. Without their efforts, I'd be pushing up daisies - or as I like to say with the Shamrock Marathon coming up, shamrocks - right now.

The other key concept was that when I was well and healthy again, I wanted to do something to make a difference, to pay it forward, to help others. I wanted to be one of those people that cancer patients, when reflecting on their survival, would be thankful for. So another thing I have done in my nine years of earnest living has been to participate in Team in Training five times, and also, most recently, the Komen breast cancer 60 mile walk. And by virtual of your participation in Team in Training, you are also one of the people that future cancer patients - unknown to you - will thank. None of us can cure cancer by ourselves - even the greatest doctors and medical minds cannot. But just as tiny rain drops, one by one, will form a mighty river, so too are each of you helping to create a flood that will one day wash away incurable cancer. So from this cancer survivor, in absentia, thank you so very much. And - GO TEAM!

Silent Sixty

Today was the Silent Mile get-together for the Fall Teams for Team in Training Richmond, Fredericksburg, and Charlottesville. The cycle, marathon, and triathlon teams all gather for this, and coaches talk about some of the things that the money raised is going to. One of the ladies on the Richmond team has already raised over $11,000, which is amazing! Then some of the patient honorees say a few words of thanks, and every one does the first mile or so in silence - reflecting on the mission, the goal of curing cancer, and those fighting the hard fight to survive their ordeal. With my sister's recent death, I was reminded of her over and over again this morning. I listened to the wood thrushes singing in the forests along the route. It was one of her favorite birds. I miss her so much.

It was also my Big Six-O today, and so I got a card signed by many present, and also there was a "Happy Birthday" poster made by the LLS staff. That was pretty cool. What a great bunch of folks to see on my birthday morning. I decided to try walking a bit, and walked almost five miles with my friend Nicki. She was married a couple of months ago, so I got to hear about her wonderful wedding. Afterwards, there was a potluck breakfast, which was really good. It also felt good to walk this far - the longest distance since I got plantar fasciitis nearly three months ago. I've come to the conclusion that I have to start walking and just see where it leads, with a sixty mile walk only 10 weeks away.

Here is my birthday poster, using a photo from my last TNT event, the Seattle Half Marathon in June, 2010.

Let's kick cancer's butt!

Some of the team starting out on the "silent mile:"

Reminders of why we work so hard to train and raise money:

This poster, with Coach Chuck in the background, features a message from my friend and teammate Ed Stone, and from yours truly. Ed is currently battling melanoma, his fourth bout with cancer at age 41.

Nicki and I first met through TNT about five or six years ago. She is a 14+ year lymphoma survivor, alive by means of a bone marrow transplant. She is awesome!

Mission Moment for the Fall Team

So, if you can't really walk or run yourself, what might you do on a Saturday morning? Well, I called Coach Chuck, marathon coach of the fall Team in Training team, and asked him if he would like me to do a water stop or two, and a mission moment. The answer was yes, and so I was at the boat lake at Byrd Park at 6:30 AM. I got to catch up with several friends I hadn't seen in a while, including fellow survivors Nicki and Mindy. It was a nice looking crew they got training for various fall events, including Dublin (green being an appropriate color for Ireland and jealousy!)

I told the team about my friend Linda. She has been dealing with three kinds of cancer since she was 29, multiple times. She is now 62. When she had A.L.L. 33 years ago, survival rates were nil, but with experimental drugs, Linda survived. It was a terrible ordeal. Her uncle watched her daughter for 11 months, and her boss kept her job open and paid her mortgage. Into her 30's, she relapsed and went through it all again. Then in her 40's, the chemo she got for the ALL caused non-Hodgkin's lymphoma, and later, breast cancer. She has had multiple occurrences of both of these, and a lot of suffering. In a note to me this week, Linda told me that she feels totally defeated and is just hoping to see her 63rd birthday in August. She said "tell the team to keep moving for people like me who can't."

Linda has endured tremendous suffering over the last three decades and this continues. It is past time to find cures that work, first time, every time, and without causing other cancers and such intense suffering.

TNT Silent Mile

I've had a horrible cold this past week, but still went to the Silent Mile yesterday for the Spring and Summer teams. I'd hoped to walk or run a few miles with them, but just felt too bad from the cold. Several us who have survived cancer spoke to the teams and thanked them for what they are doing to help raise money for patient support and for blood cancer research. We also learned what types of things the money raised by the Virginia Chapter can accomplish.

I got to see some old friends for a few minutes, and that was a bonus to going. At the end of our talks, the teams trained their first mile in silence in honor of those dealing with cancer, and in memory of those who have lost their lives to these awful diseases.

Ed (black cap) talks to the team about the importance of the mission. He is a 20+ year leukemia survivor, and has dealt with other cancers 4 times since, including a current fight against melanoma that has left him struggling to walk again using a walker. He is always positive and always a total inspiration.

Mindy (second from left) is a TNT two-time alumni who will be walking in Vancouver in a few months. She is also a multiple myeloma survivor who's brother (left) was her bone marrow donor. Her daughters and husband are justifiably quite proud of her, as am I.

Reminding us of our mission:

Robin lost her leg to bone cancer last summer, 30 years after surviving bone cancer in the same leg. She is here with her son and husband, and with Ed and his wife Leslie. Robin is another total inspiration, and will be walking the Mounment Avenue 10K in three more weeks, just 8 months after losing her leg!

Yeah - let's stomp out cancer!!!!! Who's with me on that one?

A Really Tough Day

Today, I had to say goodbye to a great friend as she lay, unresponsive and on a ventilator, in her hospital bed in the ICU. She was diagnosed with multiple myeloma just four weeks ago, and also now has plasma cell leukemia. Since her diagnosis, her condition has rapidly declined, and she has been too ill to even get treatment. As recently as two weeks ago, the doctors were saying that she should be in remission after two months of chemo – a chemo that would never happen. Over the last 10 days, she has had one horrific medical problem after another, the latest few being bleeding in the brain, pneumonia, and large amounts of fluid in her chest cavity.

Then last night, her husband called to tell us that she has bleeding in her lungs, with no hope of reversing it. He told us if we wanted to say goodbye, we had to do it today. Family is coming in from all over to see her before they remove the respirator. We went to the hospital today with two friends to see her one last time. It was a horrible and helpless feeling, the saddest thing I have had to do in a very long time. And it is going to take a long time to get over it. I held her hand and told her how much we would miss her, how we would look after her husband, and how I will wear a picture of her during my next Team in Training race. I tried, with limited success, not to cry while talking to her.

She and her husband were to celebrate their 25th wedding anniversary this spring. That won’t happen. She spent her last birthday and New Year’s in the hospital, and her last Christmas in a hospital bed at home at a time we all prayed she could start treatment and beat this thing. We talked with her about celebrating her birthday later, and we talked with her husband about celebrating New Year’s later with the two of them. That won’t happen. My wife and I talked about taking them out to a fancy restaurant in a few months to celebrate her successful treatment. That won’t happen either. Right now, it feels like a nightmare and that it can’t be true, but we know that it is. And as bad as her friends feel, we know for her family it is much, much worse.

She is one more blood cancer victim. I pray we will have a cure soon, but it is too late for our friend. Apparently, she has had the myeloma for a very long time, and it got diagnosed much too late. It, and the leukemia, just took over her body starting about 5 weeks ago. It shows how important earlier detection is with cancer.

I don’t think I can write much more, other than to say it has been a pretty bad week, and a really awful last 24 hours. My usual upbeat personality has taken a beating lately.

Cancer Sucks! It Really, Really Sucks!

A friend asked us to come over last Saturday night, because she wanted to share some news. We knew that she had had a medical appointment to examine a large mass in her tibia the day before, but all her husband said when we asked about it was “Not good. We’ll tell you tonight.” Well, the news was “Probable multiple myeloma,” a tough-as-a-nut blood cancer of the plasma cells in the bone marrow.

She had surgery Wednesday to implant a titanium rod in her tibia, because the bone was in danger of breaking without it. And that diagnosis was confirmed: multiple myeloma. It is looking pretty advanced, maybe even stage 3, which is the most advanced stage. She has had a ton of weird illnesses over the past year, and now it seems apparent that many or even most of these were caused by the myeloma as it remorselessly grew in her body.

Cancer just sucks! One more person, one more family, turned inside out and upside down, worrying about their future in fear. Every four minutes, an American is diagnosed with a blood cancer, and Wednesday morning, it was our friend Judy’s turn. She is facing the same difficult future that all newly diagnosed cancer patients do. Plus she is in a lot of pain and very sick from the side effects of the surgery. Her husband and daughter have been spending nights at the hospital. I’ve been trying to research things for them, and yesterday, I shoveled their driveway from our fresh 2-3 inch snowfall. It wasn’t much, but it made me feel better that I could do one tiny thing that might help them when she comes home from the hospital and won’t have to face getting through an icy driveway.

One more name for my next Team in Training race shirt. One more person dealing with the almost unbelievable misery of radiation and chemo, worrying how long they will live, trying to stay positive. One more spouse worrying if he and his wife will grow old together, how to get her the best treatment, feeling scared and overwhelmed. I added it up yesterday: I now know ten people personally who are currently dealing with cancer, and in more cases than not, they are very difficult cancers that are proving to be relentless, and very evil. And that number does not include the many survivors I know, nor those that have not made it.

Last February, when I wrote “The Limits of Cancer,” I was trying express how the human spirit is stronger than the evil powers of cancer. I still feel that way, but I also know that our friend is in for a very difficult time of it. Just how difficult will be made clear in the coming months. I feel really bad about her situation, and have that initial feeling of helplessness that everyone gets when a close friend or family member gets this diagnosis. Cancer sucks! It really, really sucks!

Talking to the Teams

I wanted to meet the Spring Team and give a mission moment about my eight year remission point. I am not doing TNT at this moment in time, but know a number of the people on the teams.

So I got up early yesterday and went out to meet the run team at 8AM and the cycle team at 9AM. I got to the park early and had time to run and walk three miles or so in the cold. I had hoped my friend Lelia would want to come out and run, but she ended up going in Florida, so I ran by myself, doing laps around the VITA track in the park. It felt like it could snow, but after my workout, my upper layers were soaked through, and my fleece was covered with frost on the back. I sweat buckets when I work out, even in the cold. Standing around afterwards for a half hour left me feeling chilled.

The spring team has a lot of people, which is fantastic to see. The last few years, it has been small, and it is always more fun with a bigger team. They were an enthusiastic group. I talked to them about my great fortune in reaching eight years in remission, but how even though Hodgkin lymphoma is considered a “good cancer” to have, 15% of people so afflicted will die from it. Why is that? Why is it that the drugs that cured me so successfully will not work for someone else? There has to be something at the cellular level or sub-cellular level that is different enough, and that is why more money is needed for research.

It was great to see so many old friends on this team, and I felt wistful that I am not on it, training for Vancouver. But about 8:30, I left to drive 25 minutes to meet the cycle team, coached by my friend Susan Ann. It was across town, and I got to meet six people who came out that day. Their training does not officially start until January, so this is preliminary workouts. They were riding 25 miles on the cold day. What a nice bunch of men and women!

I really appreciated the chance to talk to these fine groups of TNTers, out there in the cold and trying to make a difference with blood cancers. That difference is still badly needed, despite recent successes in the war against cancer.

The “Good” Cancer

Hodgkin Lymphoma, what I was wrapping up treatment for exactly eight years ago, is sometimes called the “good” cancer. If you get it, and can get medical treatment for it, you have about an 86% chance of living five years. Compared to most other forms of cancer, these are pretty good odds, and if you are in the 86% group, as I was, then it does seem like the cancer to have. It is one of the few cancers that doctors use the word “cured,” I think, if indeed you do survive it and go into lengthy remission. Although I know anything can still happen, after eight years of being in remission, I would be considered in the cured group.

Every year, about 8,000 Americans will be diagnosed with Hodgkin’s, and every year, over 1,000 Americans will die from it. If you are one of those 1,000 plus people, then it is decided not a good cancer. It is horrible, painful, and life-ending, and devastating to the family and friends. Yesterday, I learned of one such person.

Jennifer Willey of Kennebunkport, Maine was just 31 – so young - when she died last week from Hodgkin Lymphoma. She was diagnosed on May 26, 2005, which was nearly exactly three years after my diagnosis and just weeks before my first marathon for Team in Training. I am sure that when she was diagnosed, she was told that she had the “good” cancer and had the same high hopes that I had to continue living. After all, she had an 86% chance of surviving. She finished treatment in November that year, but unlike my last chemo in November 2002, it was not to be her last treatment. She relapsed, got more chemo, two stem cell transplants, and fought the horrific effects of graft vs. host disease as a result. Her lungs were ravaged and she spent her last days in a wheel chair on oxygen. Technically, she was a five year survivor since she made it past last May, but that is a pretty hollow victory. From all accounts, she was a remarkable young woman, and I cannot imagine how devastating her death is for her family and friends.

I wish I could have known of her while she lived so I could have sent her some encouragement, and also told her that her name will be on my race shirt for my next Team in Training event. She had a website where she collected information about Hodgkin’s and also stories of others she had met virtually along the way who had battled this terrible disease.

Jennifer’s story, and her ultimate fate, is a sad reminder of how much work there remains to be done even with a “good” cancer like Hodgkin Lymphoma. The dirty little secret is there is no good cancer. Yes, with this cancer, medical researchers have figured out if you inject four very toxic substances (Adriamycin, Bleomycin, Vinblastine, Dacarbazine) into the blood stream every two weeks for several months, more people will live than will die. But many will still die, and all will suffer considerable misery. We really haven't figured out even a cancer like Hodgkin Lymphoma, despite the high survival rate. What makes it tick? Why do some people live, and others die? How can you really defeat it, without nearly killing the patient in the process?

So much more work remains in the war on cancers. It is staggering and overwhelming at times, especially when you consider how many people are suffering from various cancers at this exact moment in time. It is a disease that never rests, never tires, never takes a coffee break, never goes into recession. It is remorseless, pitiless, and relentless, and some times – as in Jennifer’s case – the best available medical technology, courage, and grit are not going to be enough. Even “curable” cancers are not really curable right now. If you are out there doing Team in Training, or taking some other action to raise funding for cancer research, and you happen to come across what I wrote here, thank you for helping to get us one step closer to a true cure.

Lighting the Night, and Thinking of “BJ”

Even though I had not fundraised or even planned in advance to walk in Light the Night this year, my schedule freed up late yesterday afternoon, and I decided to go. I ended up running into several friends there: Kristi, Nancy, Chuck, Jenn, and Katie (who spoke as a survivor to the LTN crowd) from Team in Training, and awesome recent cancer survivor and fund-raising champ Faith from last year’s “Faith’s Hope” Light the Night team. I also met Faith’s cute little dog, Henry, for the first time. Like the rest of us, he had a good time walking for a cure. The weather could not have been more perfect for this event, with the nearly full moon shining brightly a day after the Hunters’ Moon, and Jupiter shining in the east like a beacon.

While waiting in line to register, there was a woman behind me wearing a shirt with a photo of a young man and the words that she was walking in memory of “BJ.” I told her I was sorry for her loss, and she told me that she was “BJ’s” mother, and how her son died on March 17 of 2009. He was only 16. Even though I am not a “weepy” person, I could feel my eyes filling with tears at the thought of this mother’s unimaginable loss.

If you know me, and you are familiar with what I do for Team in Training, you know that one of the really big things for me when I do my races for the Purple Team is running and walking in honor and memory of those who have had cancer. In all five of my events, my shirt on race day is covered with names, including four months ago in Seattle and 18 months ago in Nashville. So even though I am not yet signed up for Team in Training, I decided to start my name list for 2011 last night, starting with “BJ.” I told his mother that I would like to write his name on my shirt for my next race, and she seemed touched by this. She wrote his name down for me, and his birth and death dates. He was born at Christmas time in 1992 and died on St. Patrick’s Day in 2009, which should be two very festive times. But I am sure that for “BJ’s” family, these dates will always be tinged with sadness.

Cancer is always horrible. But it is particularly horrific when children are involved. My Nashville teammates Tami and Fred lost their son Blake to leukemia at age 15. My friend Holly nearly lost her daughter a few months old to leukemia. There is the little girl who’s mom talked about at our Seattle Inspiration Dinner – getting cancer twice by the time she was two years old. My teammate Ann lost her son to leukemia at age 19. Then there is the little girl in Nashville with leukemia that I ran into while I was there with the race. I will probably never see her again, but I will never forget her and hope that she is healthy and stays that way. And now, there is Maurice (“BJ”), whom I’ve never met and never will meet. I don’t know anything about this young man. But two things with absolute certainty I do know are that he had life stolen from him decades and decades too soon, and that his family will always have a hole in their lives. I can’t change any of that, but when I do my next race for Team in Training in the fall of 2011, I will remember “BJ” and wear his name on my shirt.

The Light the Night went through Carytown, and it was a beautiful walk. All of the lighted balloons glowing in the dark are so pretty. I saw many other people wearing the team shirts in memory of “BJ”, and of several other teams. It is always moving to me to see the teams, and all of the gold (walking in memory of a loved one) and white (cancer survivor) balloons. It has been eight years for me now since I was so ill, and by the grace of God, I walked last night once again as a strong and lucky survivor. One day, there will be cures for every type of blood cancer – I believe this in my heart. If we continue to be just a little more relentless than cancer is, it will happen.

Here are a few photos from last night.

It's still light, but people are gathering their balloons: red for supporters, gold for remembering those who have passed on from this awful diseases, and white for us very lucky survivors:
From right, Jackie (Hodgkin lymphoma survivor), her daughter Kristi (Hodgkin lymphoma and thyroid cancer survivor, and my friend and teammate from a number of events with Team in Training), Kristi's daughter Rebecca (may she always walk with a red balloon), and Nancy (currently with chronic lyphocatic leukemia, and one of my mentee's from this past Summer TNT season).
From right, my friend Faith (Hodgkin lymphoma survivor), her friend Marla (breast cancer survivor who just walked the 60 mile Komen Three-Day) and her husband, and Faith's and my friend Jenn, TNT alumni from this past winter. Faith and Jenn joined me this past March as cheerleaders at the Shamrock Marathon at Virginia Beach.
The walk starting, and underway through Cary Town. Light the Night!

Requiem in Pacem, Steve

My blogger holiday is over, and so is my two week vacation to Alaska. Before I went on vacation, I wrote about a man named Steve who was fighting a very tough fight with leukemia. During one of my rare e-mail checks from Alaska, I learned with sadness that Steve passed away about a week ago.

Every ten minutes on average, someone in the United States dies from a blood cancer. Last week, Steve became one of this terrible set of diseases latest victims.

I never met Steve, but he sounds like he was a great guy and devoted to his family. My heart goes out to them. Rest in peace, Steve. Your difficult and valiant fight is over, but you will not be forgotten.