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Marathon Walk Thoughts


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Dear Friends:

The Marathon Walk yesterday was both physically and emotionally taxing. Physically for the obvious reason that 26.2 miles is a considerable distance even for the young--and the way I feel today I am clearly not yet young again--or even headed in that direction.

Strangely, beyond feeling really tired and a touch stiff, the only real pain I am feeling is in my hips--and they really only bother me when I try to walk. I have never, in all the years I have been hiking and walking and running, had pain in my hips afterwards. Curious.

But I could feel Jane with me on every step--and no matter how tough the physical pain was--they call it Heartbreak Hill for a reason--her voice kept me moving forward.

For the first 60 percent of the walk I was largely alone. I thought the Caring for Carcinoid group had already left when I got there so I left at top speed to try to catch them. A couple miles down the road I caught up with Rosie who was carrying their balloon. She told me she had left early and they were still at the start waiting for me. Eventually she got a message to them and we met up about mile 16 for lunch.

But that first 16 miles I had plenty of time to think and to remember the walks Jane and I had taken, the mountains we had climbed, and those final walks at Dana-Faber and Brigham & Women's--ending with the day I had to push her wheelchair across the street to the Shapiro Building the night before her heart surgery.

And then there was that long figurative walk that lasted nearly a month as I walked with her to her death. I remembered our Thanksgiving dinner of cream of chicken soup for her and pumpkin soup for me as we sat together in her hospital room. I remembered how glad I was that she had come out of that first coma so that we could have that one meal together. It was, we agreed, the best Thanksgiving of our lives.

I remembered her going into another coma the following Saturday morning. I remembered talking to Jen Chan about one final attempt to break the series of carcinoid attacks--and how happy we all were when it worked.

I remembered the slow steady progress after she came back to us that night. I remembered the permanent pacemaker. I remembered making plans for what we would do in February--how we would go back to the inn on the lake where we had spent the last night of our last vacation and just sit there in that suite and stare out over the frozen water.

And I remembered that Thursday morning when it all went to hell. I remembered the show we were watching, how her body started to shake, how we put her back to bed thinking she just needed a nap, how her blood pressure crashed, how Jen came in--and Jane woke up just long enough to here her say that all we could do now was make he comfortable.

I remembered her waking up again at six o'clock that night, unable to communicate beyond blinking her eyelids. I remembered her drifting off to sleep, both of us knowing she would never wake up again. I remembered saying, "Good night, my warrior princess."

I remembered weaning her off the ventilator, removing the feeding tube, reading to her and holding her hand and talking to her--and hoping against hope for the miracle that I knew would never happen the way I wanted it to.

As the intensivist had said to me, "You both wanted to defeat this cancer. Now the only way for her to defeat it is to die and take it with her." That was what was happening.

And I remembered how, during the first coma, when I thought she would be gone that day--that she would never wake up--I realized that I had always told her if someone took her from me the police had better find that person first--and how this disease was taking her from me and was creating that same imperative: kill it so it kills no one else.

Out of those memories came a renewed sense of purpose. I did not care how painful the steps became nor how long I walked alone. I remember saying to myself at one point, "I don't care if I have to crawl the last five miles or the last ten miles, I am getting to that finish line under my own power." I knew that walk was symbolic of what we are up against in fighting cancer in general, and fighting neuroendocrine cancer and carcinoid syndrome in particular.

After lunch I joined the rest of the Caring for Carcinoid group that was walking from Hopkinton and two people who were starting from there. They kept me talking about Jane, about NEC, about why this thing is so tough to diagnose, let alone cure. They let me forget the pain and keep moving forward.

And then we got to Coolidge Corner in Brookline. This young woman came up as we finished taking a picture. She was somewhere between 18 and 25 to look at her. She wanted to know what the Caring for Carcinoid Foundation was. We started to explain what NEC is, but she stopped us.

"I know what neueroendocrine cancer is," she said. "I have it. They took my appendix and part of my lower intestine out last year." This was, she said, her celebration of her survival and recoverey. She and her friend had walked all the way from Hopkinton.

I did not ask her her name. I wish now that I had. And I wish she had been walking at our pace, because there are things I wanted to say to her afterwards--that I hope she meets the person of her dreams, that she marries that person and that she has children if she wants them; that I hope she lives a long life and that she finds as much joy in that life as Jane and I had over the 21 years, three months and eight days of our too short marriage.

Her life is likely still at risk. We have no cure for NEC. But that operation has bought her time--time in which we can find a way to manage this insidious little demon, time for us to cage it and kill it.

Time for us to arrange things so that they end differently for her than they did for Jane and me.

At the end of the walk, sore as i was, I raised my staff over my head with both hands and screamed, "Victory." But i did not fall to the ground and die. I talked with the other members of the team. Found some yogurt, thought about a massage. Then I found a quiet corner and let the the emotions overwhelm me. I cried the good tears we all wait on.

I got back on the bus. Road to my hotel room. Took a long hot shower--and slept.

Peace,

Harry

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All I can say to that message is THANKS FOR SHARING.

How you did it, I don't know, but everyone in this unenviable lonely position we share should feel your victory with you.

Earl C

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Harry,

You were present for the walk...present to Jane, to yourself, your feelings, your body. That is all we can ask...to be present and aware. I admire you doing that many miles. I am sitting here attempting to get motivated to walk our dog. I am sorry your hips hurt...I am sure your body has taken a beating with the stress, grief, etc. and for some reason it has aggravated your hips. Listen to your body.

Good for you to finish, to share, to cry, to sleep.

Mary

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My Dear Friend Harry,

I am so proud of you, for doing and getting through that 26.2 mile walk, that you prepared for so much. I understand all the thoughts that you had along the way as you and mostly Jane battled this demon inside her. You have, great courage an a good heart, to continue this battle of the demon.

Now is the time to let your body, to recuperate, from this very grueling walk. If you need anything anytime, I am here for you, just like you were there for me. So I am paying it forward, everyday. Rest your body, mind, and soul, for the war you are in. One battle at a time and knowing you, you will win this war, or at least have them on the road to defeat.

God Bless, Harry, keep moving forward, never give up or give in to this grief, we all have to learn to cope with. You have the fire inside you, just like I have this roaring blaze in me. That on one or anything will ever put out in us. I pray you have the great peace inside you like I have in me. I ask this in the name of Jesus Christ, my Lord and Savior. Amen

Dwayne

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Harry, dear ~ I just watched a TED talk that made me think of you, and I'd like to share it with you and others who may be reading this. Dave deBronkart blogs as e-Patient Dave, and his passion reminds me so much of you. He maintains that patients are the most under-utilized resource in health care, and urges patients (i.e., all of us) to take a more active role in managing our own care, by owning our medical data, connecting to fellow patients and making medical care better. He sounds like a fellow you would like to meet! You can read more about him here, and watch his 16-minute presentation here.

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