So, what is in a name?

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When I started Walking with Jane one of my goals was to put a human face on carcinoid/NETs. I want people to know the name that go with that face, as well as there story. but their are other faces and names whose stories need to be known, as well.
When I started Walking with Jane, one of my goals was to put a human face on carcinoid/NETs. I want people to know the name that goes with that face, as well as her story. But there are other faces and names whose stories need to be known, as well.

The name of the foe

I lost my wife Jane to carcinoid/NETs on December 10, 2010. We vowed when she was diagnosed less than four months earlier that we would find a cure. In the end, she killed her cancer the only way she could: by dying and taking it with her.

I’m not going to solicit you for a donation…

Since her death, I’ve worked with several different groups to raise awareness about the disease and fund research. Each September, I lead a team in the Boston Marathon Jimmy Fund Walk that raises money for research into carcinoid/NETs research at the Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors.

The name on the shirt

This is not a request for donations–at least not monetary ones. Each year, I design a t-shirt for our team. Last year, I included on the shirt the names of three people, including my wife, who had died of carcinoid.

I lost my wife Jane to carcinoid/NETs on December 10, 2010.

This year, I am thinking about incorporating more names into the shirt design. Approximately 33 people die of carcinoid/NETs every day in the US. We diagnose about the same number every day–although that number is increasing each year.

Sixty-seven names: the living and the dead

What I think I’d like to do is

include the names of 33 people who have died and 34 people who are living with the disease on the shirt. I don’t want your address or your email. I’m not going to solicit you for a donation later.

Approximately 33 people die of carcinoid/NETs every day…

We do have people on our team who have lost loved ones to carcinoid/NETs. We have others who have the disease. If they want their names on there, I will give them preference. But we are a small team, and I don’t see more than five names coming out of that group, total.

The power of a single name

If you are interested, you can simply put your name below in the comments. If you think this is a bad idea, you can say that, too.

…we are a small team…

If you want to know more about us and our team, you can visit the rest of this website. Caring for Carcinoid is the other sponsor of our team. You can learn more about them at caringforcarcinoid.org.

I travel to schools, health fairs, walks and runs. I will go anywhere I can tell Jane's story and raise awareness.
I travel to schools, health fairs, walks and runs. I will go anywhere I can tell Jane’s story and raise awareness.

9 thoughts on “So, what is in a name?”

  1. I think this is a grat idea! My name is Sharon Larsen. Diagnosed in June 2012. Stage 4.

  2. I’d be honored to have my name on the shirt. Brigitte Schattenfield, diagnosed 2012, stage 4. Will I be able to purchase a couple if the shirts?

    1. Dear Brigitte,
      I have added you to the list. I can’t say whether the shirts will be available for purchase or not. I had not thought about that possibility. Some other people have brought up the issue in other places I have posted this idea today. It will depend on a couple of things, starting with how much interest there is from people in doing so. It will also depend on things like how much the shirts cost to have made, how much it will cost to ship them to people, and what people are willing to pay for the shirts. I won’t know that for a while yet, since I am still in the design concept stage and don’t yet know even how many inks I am looking at.

      But there does seem to be some interest out there. Once I have the design and the costs figured out, I’ll let people know and see how much interest there is. But I am increasingly thinking this will happen.

      –Harry

  3. Amanda Kiser

    Diagnosed on 2/14/2013 at age 22 with 5.4 cm mass in lower right lung. Lobectomy on 6/7/2013. Carcinoid found in 8 of the sampled lymph nodes. Typed as typical, stage 3. As of 2/14/2014, scan was clear.

  4. Video assisted thoracotomy in March 2010 for two typical carcinoids with no lymph involvement. Traditional thoracotomy in March 2013 for one atypical carcinoid with lymph involvement. March 2014 three enlarged lymph nodes biopsied showing typical carcinoid.

    I would also be interested in a t-shirt if they become available.

    2. Richard, I have read the website from top to bottom. There you were! Like I told you we are all right beside you from the beginning. you will beat this but, not alone, with all your friends and family here in Illinois! Saralea

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