2:21

You begin to look like you’ve had enough reading for a few minutes. So here’s a video about why I’m in this fight to stay.

https://www.youtube.com/watch?v=-GKvH8MxfYM

3:09 p.m.

Today is the 47 month anniversary of Jane’s death. Normally, I would spend a portion of today at her grave but, as we used to say to each other, “Our work is with the living.” But very month, I write a special piece about my progress since her death and try to put her death in a larger perspective. That piece was published separately from what is here, and I would encourage you to read it during this hour of the mediathon.

Our next patient piece is by Kara Daniels was diagnosed about a year before Jane was. She is a member of our Marathon Walk team and raised over $2700 for that effort. She was one of eight Pacesetters on our team, which raised $66,770 this year. She walked five miles, despite her cancer. Never say zebras aren’t tough.

Kara’s Story

When I agreed to write about my carcinoid experience, I thought this was going to be a lot easier than it actually is. It’s a journey that has taken me through 27 CT scans and over 70 chemotherapy treatments, not to mention ultrasounds of my neck and an upper endoscopy “just to be sure.” It took me a long time to actually say that I have cancer and an even longer time to say that I am receiving chemotherapy.

I had never even heard of carcinoid or neuroendocrine cancer when I was diagnosed a little over 5 years ago.

Although at this point I can’t recall how long I actually had symptoms for, I feel very fortunate in the fact that once my symptoms persisted on a daily basis, I was diagnosed and began receiving treatment all within 2 months. I was diagnosed with metastatic carcinoid in September 2009 after a two-month workup for Crohn’s disease, Irritable bowel syndrome and Celiac disease. By the time I was diagnosed, I had diffuse metastasis in my abdomen, in addition to metastasis to my liver, outside my right lung and to my pelvis. I have been on a clinical trial for the past four and a half years, for which I go to Dana-Farber every three weeks for blood work, to see my physician or NP and to receive chemotherapy.

I have just recently read that carcinoid is considered the “Look good cancer.” Shortly after I was diagnosed, a friend of mine told me she overheard someone talking one day about the fact that I have cancer. This other person proceeded to say “There’s nothing wrong with Kara, she didn’t lose her hair.” No, I haven’t lost my hair, and if you didn’t know me, you would never know I have cancer. I have continued to work through all of this and lead a very active life. It is the internal struggle that people don’t see.

Living with the side effects and lifelong treatment of carcinoid does provide many physical and emotional challenges. There are days when I really don’t have a lot of energy and sometimes it takes me longer to do certain things than it used to but still, I try to not let that stop me.   A very dear friend of mine passed away the beginning of the year from cancer. She was a great support to me and told me when I was first diagnosed that it was OK to have a pity party every now and then, which yes, I do.

I am fortunate to have the support of my family and close friends. I have to admit though, that there are times when I feel even my friends do not understand how I feel because I “don’t look or act sick.” People who would call me before my treatment to wish me luck or contact me afterward to see how everything went no longer really do that. That is the hardest aspect for me to deal with.

It is very difficult for me to live with the uncertainty of my cancer’s progression. I hold my breath every ten weeks when I get my CT scan results. I wonder every Christmas when I decorate the tree if this will be the last time I’ll ever do this. I hope to be able to see my son graduate from high school, college and to get married but there is a realization of eventually what will happen.

Each day now offers a new challenge and I have learned to realize the tough times for what they are and have learned what truly is important. There is a quote that says “You never know how strong you are until being strong is the only choice you have.” I can’t change the cards that were dealt to me but, in some way, I feel I have become a stronger person because of it.

–Kara Daniels

3:54

One of the underlying themes of this year’s NET Cancer Day is “Time to Diagnosis.” Patients are posting pictures of themselves with signs that say how many years they went before they got the right diagnosis. Some are even listing the things they were told they had before someone got it right.

The average time to diagnosis is 5-7 years from the first symptoms with three incorrect diagnoses coming before the right one.

But those are the averages–and the average is not always the reality. If they asked Jane to hold a sign up, hers would say 30 years. And she had so many wrong diagnoses we honestly lost track. She had at least three before I even met her, ending with the doctor who told her it was “All in her head.”

I wrote the pamphlet “Is it IBS? Or is it NET Cancer” two weeks after Jane’s death. I was in an airplane at 30,000 feet on my way to spend Christmas with my family in Seattle. My brother David thought it would be bad for me to spend the holiday alone in New England. To be honest, I’m not sure Seattle was any better for me than home would have been.

There is a picture of our family taken there on Christmas night. I don’t recognize my face in that picture–or my body. I look like an angry specter floating in the background. The only good thing, in many respects, was that it gave my father and I an opportunity to mend the fences that had come up between us decades before. My mother had died barely ten months before Jane. We finally had something in common: our grief over the loss of the people who had been the other half of our souls.

My father gave me the night Jane died the only phrase that helped me make sense of what I was feeling. “And now you know,” he said across the 3000 miles of air and space, “that there is nothing anyone can say that will make this feel any better.”

Some people may find that cruel. But it is the truth, at least for me, about the power of this kind of loss. Jane and I always dealt in truth–even when that truth was painful. My father dealt with life the same way.

But i was at 30,000 feet and seething with the dull anger only grief creates. More than anything else, ignorance had killed my wife. IBS is not a diagnosis, one of my doctors once told me. It is what we call it when you have a digestive problem in your belly and we can’t figure out what it is. It makes everyone feel better.

“And then,” I said to myself on that airplane, “it kills you.”

How many times had doctors told Jane she had IBS, I wondered? I knew I’d heard it at least three times in the years we were married, knew she’d heard it at least once before we even met. When she started flushing in her mid-30s, they told her it was early onset menopause. She passed out because she had low blood pressure. She dehydrated easily because she was too athletic and had the body fat of an elite athlete. She had insomnia because she was nerved up by the schedule she was teaching–AP Bio, Honor Chemistry, and Honors Physics all at the same time. If her feet swelled, it was because she was on her feet on a concrete floor all day in the lab and classroom. If she felt light-headed, it was anxiety.

This is what happens when we look at one symptom at a time–as so many doctors do. They are specialists and try to fit everything into their specialty. Rarely do any of them step back and look at the big picture of the whole patient. Her last doctor finally put all the pieces together, but by then it was 29 years too late.

So I wrote the pamphlet, hoping it would leave people a little less ignorant, would give doctors a better shot at seeing the big picture. I had Dr. Jennifer Chan, Jane’s oncologist comb through it to make sure I’d said the right things in the right ways. It was a small cry in the dark–a single match–but it was what I had to work with. I’m not a doctor, but I know how to read and put words together. I keep hoping that will be enough to make a difference.

I say to people over and over again, “IBS is not a diagnosis. Keep looking until you find out exactly what is causing the problem. What you don’t know can kill you.”

It’s what today is about. For the last 10.5 hours, I haven’t really brought up the topic of money. Ron talks about how to donate to Caring for Carcinoid. there was a sentence or two earlier about it, but I haven’t been playing Jerry Lewis today. I’m going to for an hour later tonight. But what really matters to me is getting the word out. Ignorance kills. Knowledge gives people a fighting chance.

At the craft fair I was at this weekend, someone asked how we had done on the monetary side. I told them we did OK–but that the real point of being there was to talk to people about NET cancer. If we reach just 10 people in five hours, that can make a difference.

My question is, am I reaching you today? Are you learning something that may help keep you or someone you love safer than they might otherwise have been? A million dollar donation would be nice–but what really matters is whether or not we are giving someone a chance who didn’t have one before.

5:20

I have no idea where the last hour has gone. But I think it’s time for a couple of videos on why NET Cancer Day matters.

https://www.youtube.com/watch?v=h8GD3N1Jikw

https://www.youtube.com/watch?v=QsQejUYM9g4

5:42

When you are facing a disease with no cure and that most doctors have never heard of–let alone civilians–you know you are in trouble. So you go looking for information and support wherever you can find it.

Some of the best support you can get is from people who have been through it all ahead of you. Many patients have taken to the Internet and blogging to alleviate the frustration of dealing with NET cancer. By writing their experiences down they get a release from the anger, fear, and despair of dealing with a disease where a well-educated patient can know more than the primary care physician they are dealing with.

Of course anything you find on the Internet you need to take with a pound of salt–at a minimum. We’ve all seen the “studies” that claim marijuana will cure every form of cancer known to humankind, restore your hair if you’re bald, and cure the common cold. I won’t deny that there have been some rigorous studies done on some things that look interesting. But very little of it is peer-reviewed science. Once upon a time, people claimed taking mercury would cure venereal disease. And don’t get me started about the political lies spread over this new frontier.

But when people tell their real stories about their encounters with the disease they can have a cathartic effect on others with the disease. As Jen Chan said earlier today, one of the real difficulties of NET cancer is the emotional toll it can take on not only the patient but their friends and families. Spyder Robinson, a writer I admire, talks in some of his stories about the power of a single idea to bring healing: “Shared joy is multiplied; shared sorrow is lessened.”

There are some treatment gems that come out of these blogs periodically. But I would always want to check for the science behind those ideas before I would pursue any of them. And that is generally the least important thing about them.

Danica Corey writes a blog about her encounters with NET cancer on a regular basis. She has two daughters about twelve years apart. This entry recounts the beginning of her journey with NET cancer.

My story begins in 2006 (January I think). I had fired my most recent doctor and was going in to see a new one. At this point I had seen seven doctors in four years and I was ready to give up. Before I walked into this new doctor’s office I had decided this would be the last one. When she walked into the office–and before she could say anything–I told her, “I have seen seven doctors in the past four years and all of them have told me there was nothing wrong with me and it was all in my head. If you don’t want a challenge, I will walk out of here and you will never see me again.”

This doctor sat down and spent the next 45 minutes with me and came up with a plan. First she ran blood work–more blood work and labs than I had ever had prior. When most of that came back normal, she started looking elsewhere. She sent me to specialist after specialist.

Nothing . . .

She called me one day and told me to go get a chest x-ray as she thought maybe I had inflammation around the heart. Before I even got home that day she called me on my cell phone and told me she wanted to see me in her office the next day. She couldn’t say anything over the phone. When I went to her office she told me they saw a mass in my right lung and she was sending me to a pulmonologist to have it biopsied. Things went really fast after that. When I had the biopsy done I ended up having to stay overnight because they collapsed my lung.

So then I waited for results…

A few weeks later I got a phone call from the pulmonologist while I was working and at the front desk. He starts out by telling me they figured out what it was. OK…fine…then he goes on to say well you have cancer. Its called carcinoid. It’s a 2 cm tumor in your lung. He said he didn’t know that much about it, but he gave me the spelling and told me to look it up.

REALLY!!

I was stunned and a little freaked out. He told me this over the phone while I was working.

I walked into my boss’s office and told her. She sent me home for the day. I got to the car and called my husband. He was a little more than upset that I was 1) told over the phone and 2) while I was working. My husband told me to stay there and that he was coming to get me.

I remember almost nothing of the next few days. I was stunned and overwhelmed. Other than my husband I had no one to talk to and no one called.

I did what I was told and researched it. I found out a whole lot of information and when I went in to see the oncologist, I showed him my research. He wasn’t as impressed as I thought he would be. He outright yelled at me for trying to do his job. I was stunned and so was my husband, who looked as though he was going to punch out the doctor (and I didn’t blame him). Then he told me I had to have surgery or I would die. He said he was referring me to a surgeon. Then he got up and walked out. My husband and I were left there just looking at one another. I don’t think we spoke all the way home. Not because we were mad at each other, but because we were outright stunned.

There was one thing I had done a few months before all of this happened and I’m sure happy that I did. To this day I still have no idea why I did it. An AFLAC representative came in to our office selling insurance and I ended up getting a cancer policy that day. I just had a very strong feeling I needed to do this. Of course my husband thought I was off my rocker but it was only a few dollars a paycheck. I almost stopped it. I didn’t know at the time that I would actually need and use it.

I don’t remember much between the times of seeing the outraged oncologist until I met with the surgeon. I do, however, remember that morning when we were going to see the surgeon. I told Mark that morning that if I did not like the surgeon I would walk out and not return. When he walked into the room, I was put at ease. He was the kindest person and listened to me. I felt very good about all of it when we walked out.

The next few weeks and months were filled with tests and scans. I went in for surgery on May 31, 2006. Everything seemed to go according to plan. The surgeon went in and removed the lower lobe of my right lung via thoracotomy. Towards the end of my surgery, something went wrong and the anesthesia started to pool in my hand and I went into carcinoid crisis. The nurse went out to talk to my mom and my husband and mentioned something to that affect and when she realized no one had mentioned it she clammed up. To this day we still don’t know what happened. I was wheeled into recovery and I was in ICU for 2 days. It took twelve hours for me to come around after surgery. No one could, or would, explain why or what happened.

I spent the next week in the hospital. I went back in to the oncologist a few weeks later and he pronounced me cured. That was not the end of it but rather the beginning.

I went back to work after a few months, but became very sick again within a few weeks of returning to work. Ended up I went into my Dr.’s office and she sent me over to the hospital for emergency gallbladder surgery. It ended up I was admitted for a few days before I could have the surgery because my potassium was so low. They had to do infusions before they could do any surgery. It took them two days before they could stabilize me enough to have surgery. Then I went into carcinoid crisis during surgery again because they did not have the sandostatin drip on hand. I recovered from this setback and returned to work again.

Later that year, in December, I returned from a work Christmas Party to my phone ringing at home. I thought it was a strange time for my doctor’s office to be calling me–after all it was after 6 pm. The nurse on the phone told me I had to come in right away. I had been in the office the day prior and had routine blood work done (well I thought it was routine). This nurse went on to tell me because of my condition it was urgent I go in for a potassium infusion or I could go into cardiac arrest. I asked her what she meant by “My condition.”

She said, “Well you know you are pregnant right?”

I told her she was crazy because they told me I would not be able to get pregnant and I went on to tell her she had the wrong person. I am certain it took her ten minutes to convince me she did have the right person. I was in shock and terrified. In the weeks prior, I had been through lots of testing in the nuclear medicine department. Not only that, but I had had CTs, MRIs and x-rays. I could only imagine what all this must have done to the life growing inside me.

Come to find out I had had an octreotide scan two weeks prior and they had seen something pop up on the test that kind of surprised them. In the report, it stated that there was a hot spot near or in the uterus and I needed to see my ObGyn for follow up. At that point my doctor had been contacted and asked me to go in for blood work. I thought it was routine, like I said. Turned out she ran a pregnancy test and that little hot spot they saw on the scan was my little Patty.

Once again, my husband and I were completely overwhelmed with doctor appointments. Early on, we were advised to terminate the pregnancy because they had no idea what all the radiation might have done to the baby. One of my first appointments we went in was parade of doctors coming in and out of the office. I think all in all there were twelve doctors I saw that day. I felt like an experiment or some kind of carnival freak. I even had more than one doctor yell at me for being so careless and getting pregnant in the first place. It was not like I meant for that to happen–after all we were using birth control.

The pregnancy was compounded with difficulties because of the fact I was still recovering from lung surgery. It was a miserable eight months. I was so sick most of the time. I was suffering from carcinoid syndrome and was constantly in the doctor’s office getting infusions of potassium and IV fluids because of the persistent diarrhea and vomiting.

I had hoped to deliver her natural, but because of my condition and because they really did not know how my body would respond to the stress of natural childbirth, they decided to do C-section. The surgery did not go as planned, because at the time they had considered me cured and did not have a Sandostatin^® drip on hand. My blood pressure dropped and they had to call for a crash cart. Things turned out ok after that and my little Patty was born. She was very small at 5 pounds 10 ounces, and she was a little early at 34 weeks gestation.

It took another year of suffering with carcinoid syndrome symptoms before I convinced my doctor to do a 5-HIAA test and they could see something was not right. I was put on sub-Q injections of octreotide and I did these myself for another year. I did these until we moved in 2009, when I was finally put on the Sandostatin LAR^® injections.

I have never really stopped to think about my diagnosis. As far as coping–I don’t really. I don’t let myself get stuck in my head thinking about it. I take everything day-by-day. I have a hard time looking at myself as being sick. I have always taken care of everyone else and have always been the strong one. I have hidden from everyone how much I really suffer with all of this. I have always played everything down as to not let anyone really know what is going on. I don’t think even our families really understand. Recently it has become difficult to hide it and I have had to come to terms with it all. I still don’t ask for help and I think that bothers people (including my husband) but I am learning slowly. I have never found it easy to deal with my own problems.

My explanation to myself has been that because they have not found any more tumors maybe it is not so bad. I know this is not true because I live with the symptoms of the syndrome every day. Sometimes it is easier not to think about it and just push it aside and take care of my family.

Up until 2011 it was easier to just not say much to people. I was able to take care of most things on my own. Then, around November, I think I started to get very ill once again. I was hospitalized with what they called Ileus. My insides just kind of shut down. I had to have an NG tube put in for a few days. What a nightmare that winter was. I was in and out of the hospital three different times and have never quite been the same since. I now have to rely on people more. I have not been able to drive now for a couple of years, due to some vision problems I have, as well as the fact my reflexes, because of a movement disorder, just are not what they should be. I have been advised not to drive at all.

This has completely changed our life. It makes it very difficult for me to do what I really want to do, so I get very frustrated at times. I know it is hard on my husband because he is back in school getting his degree and is really trying to make things better for us. He tries to spread his time between school, taking care of me and helping with Patty (our youngest, five). Shann (our oldest, 17) is almost grown and he runs her around where she needs to go. He also helps with most of the housework, too. I feel bad because I used to do most of the housework and I took care of the girls. Now I am unable to do most of what I use to do, so now I do what I can to help out.

Our youngest is a huge challenge for us. She was diagnosed on the autism spectrum, is epileptic, and has moderate hypotonia (which used to be called floppy baby syndrome characterized by abnormal and reduced muscle tone, along with muscle weakness). She was born fairly small and has had challenges since birth. At 18 months she had two grand mall seizures that changed everything. She is now five years-old and thriving in kindergarten. She still has a long road ahead of her with many challenges, but she has a good chance at a really good life with lots of support.

My husband and I have no real plans. I think we have not wanted to see it or really face it head on. We have started talking more about it recently and really should start making some sort of plans. Just talking about it right now is a good start I think. I know I still have a little time left (or so I hope–no one ever really knows how much time they have, really). I have gotten really good at not facing my future. It is hard for anyone, but when you have a special needs child who will need support most of her life, it is twice as hard, I think. I know there will be many who will be able to step in for me, and my husband will be there for her, as well as her big sister (who I know will always be there for her little sister). However, as a mom, I want to be there for both my girls.

Like I said before, we do not know how much time we have left on this earth. We just have to do the best we can with what we have. I just hope it will be enough–and I hope my girls and my husband always know, no matter what happens, I love them with all my heart.

–Danica Corey

If you’d like to read more of Danica’s story, she suggests the following posts in the order presented here:. Or you can go to her blog at http://mycornerofthepond.wordpress.com

http://mycornerofthepond.wordpress.com/2011/07/23/just-a-bad-week/

http://mycornerofthepond.wordpress.com/2011/08/02/follow-up-at-doctors-office-more-realizations/

http://mycornerofthepond.wordpress.com/2011/10/23/will-i-see-her-grow-up/

http://mycornerofthepond.wordpress.com/2012/01/27/hard-questions-difficult-answers/

http://mycornerofthepond.wordpress.com/2013/01/22/no-i-did-not-fall-off-the-face-of-the-earth/

http://mycornerofthepond.wordpress.com/2013/07/28/we-finally-landed/

http://mycornerofthepond.wordpress.com/2013/09/30/giving-up-is-not-an-option/

http://mycornerofthepond.wordpress.com/2013/11/06/when-doctors-and-insurance-comp-take-away-your-cancer-treatments/

http://mycornerofthepond.wordpress.com/2013/12/23/a-renewed-hope-just-in-time-for-christmas/

6:42

If you found Danica’s blog interesting, you might also try these:

6:46

The time has come to talk about money. It is not a subject I really want to broach because I hate asking people to make donations. But the unvarnished truth is we can’t count on big pharma or the government for money. And research and trials cost money–bundles of it.

I’ll also be the first to admit there are alleged cancer charities out there that take in substantial sums of money, very little of which ends up doing much more than paying administrative salaries. I think that’s criminal and it makes me crazy.

The good news is I haven’t found a NET cancer charity that does that. Those I’ve worked with run extremely lean organizations and are quite transparent about where the money goes. Anyone who raises more than $500,00o in a year has to file a Form 990 with the federal government–and those are public records anyone can access. Both the Caring for Carcinoid Foundation and the Carcinoid Cancer Foundation link to their Form 990 on their websites. You can see exactly what they take in and what they pay out to whom.

Walking with Jane is not big enough to have to meet that requirement. I can tell you that no one here gets paid a nickel. I am a retired teacher. I live frugally so that I can donate as much of my income as I can to NET cancer research and awareness. Every penny we raise goes to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute or to the American Cancer Society Relay for Life of Greater Fall River. Donors determine where we will send the money they donate. Currently, DFCI gets about $8 for every $1 that goes to ACS. We also give a scholarship each year to a graduating Westport High School senior who is entering either medicine or science teaching. In addition, we give a scholarship at Jane’s alma mater, Bridgewater State University. I personally make donations to CFCF and CCF each year, in addition to donations to the Program in Neuroendocrine Cancer through the Walking with Jane Dybowski Fund for Neuroendocrine Cancer.

In short, I put my money where my mouth is. I want carcinoid/NETs dead–and if that means I buy the cheapest, most economical–and most reliable–car I can find and drive it for 12 years, I do that so that I can bring about the death of the cancer that killed my wife.

Some folks think cancer foundations need to do more to lobby the Congress about cancer funding. But the way the laws are written, it is illegal for any of us who are 501 (c) (3) charitable organizations to do so. When I make lobbying trips, I do so as an individual–not as the president of Walking with Jane.

Here’s the awful truth though: what we spend annually on NET cancer does not amount to a rounding error on what we spend on lung cancer or breast cancer or prostate cancer or colon cancer. Aside from the contributions of drug companies, we spend less than $30 per year per patient–and even with what the drug companies kick in, we spend less than $60 per patient.

There are lots of things about ACS I don’t particularly like. we don’t get much respect there. But they do kick in about $1 million every year for NET cancer research. That doesn’t sound like much, but it is at least 10 percent–and maybe more–of what gets spent on carcinoid/NETs research in this country. We can’t afford to pretend that money doesn’t exist.

So here I am with my tin cup. I’m not going to ask you to make a donation to Walking with Jane. But I do know both CFCF and CCF have projects that need financial support. I know the Program in Neuroendocrine and Carcinoid tumors at DFCI has projects worthy of your support. And I know my personal support of all three is going to be smaller than usual this year because of multiple gum surgeries I’ve had to go through–and that I’m not done with yet.

If you have some money and are looking for somewhere to ‘invest” it, these organizations will make a difference–as will any of the major NET cancer centers in the US.

7:43

While we’re on the subject of money, in less than two weeks, registration will open for next year’s Boston Marathon Jimmy Fund Walk. Our team–which will walk under a new name that is still to be decided–will be the first Walk team ever with it’s own officially recognized FB page. I spent part of the weekend piecing together a prototype of the page so we could see what it would look like with the official Jimmy Fund logo. You can look at the prototype at https://www.facebook.com/pages/Allies-against-Carcinets-Marathon-Walk-Team/803441499702633?ref=hl.

But don’t bother liking the page. It isn’t right yet–and any name change means I’ll have to start the process from scratch. But do let me know what you think.

By the way, this year’s caring for Carcinoid Walking with Jane and Hank and Anne team–now you know why we need a name change–raised $66,770.28, all of which goes to carcinoid/NETs research.

8:07

We have about four hours to go here on this year’s Social Mediathon. I’m running out of steam  a little bit–but I said I’d run until midnight and I meant it. But I could use a little help at this stage. Ive posted, between the main body here and places I’ve sent you off to look at, close to 20,00 words.

The problem is, aside from some quick “I like this” kind of comments, there hasn’t been much reaction from any of the over 2500 people who have looked in over the course of the day. It’s tough working in this degree of vacuum. I’ve got plenty more to talk about, but at this point I’d like to know where you’d like this conversation to go.

So what are your thoughts?

8:26

Since I brought up the Program in Neuroendocrine and Carcinoid Tumors, I suppose I should let the guy in charge of it talk about it.

https://www.youtube.com/watch?v=UbRu5rTNu08

 8:40

I’ve just spent a few minutes scrolling through Facebook. Frankly, it could be any other day of the year for the most part. There are a few extra zebra pictures that are outnumbered by the cat and dog pictures and the cute kid pictures. There’s the usual  set of posts in the run-up to Veterans’ Day. Very few people have done anything to their profile pics to show any kind of support for the cancer today is about.

I wish I could say I was surprised. I can’t. For most people, cancer was last month–if they think about it at all. Cancer is one of those things we don’t like to think about–something we can fight by buying the right blender or the right can of soup in the right month. The rest of the time we put it on a shelf and try not to think about it.

Today, I got smacked by my third and fourth new cancer cases of the last week. I spent my day helping them while trying to help all these other people I know who have the same cancer Jane did. It’s hard to connect to the political posts and the cats and the cute kids and the invitations to play games I have no interest in even when I’m feeling upbeat and positive.

I understand why it is so hard to get people to pay attention. They have their own crises in their own lives. I saw a post from someone yesterday talking about how they were too rich for food stamps but too poor to be able to afford food through the end of the month. I’ve been there–may some day be back there since there is no way my pension will keep up with inflation. Our government remains as dysfunctional as ever for the common people–though it seems to work just fine if you are a corporation or independently wealthy.

But cancer… I’ve seen too many people die from it–just as I’ve seen too many people in poverty. I’m not talking about the clean deaths you see on TV. I’m not talking about the humorous poverty of Two Broke Girls. I’m talking about the real thing–in both cases. And when you’ve seen either one for real, lived through either one, it changes who you are and how you perceive the world around you. And that is true of the real anything: war or pain or loss…

I wish I could get angry about today–about all the people who just kept on as though today were any other day. I can’t. I know too well that they have their own tragedies they are trying to work through on their own.

They, too, have a rare disease that may not be as rare as they think. They, too, are zebras. They just belong to a different herd.

9:28

Pamela ter Gast is a patient at DFCI. She has been over nearly every hurdle a zebra can encounter. Yet she remains incredibly upbeat–as this post will attest.

Just my Saturday thought….

We’ve been dealing with this for enough years to be grateful for every new day. I’ve had days with such indescribable pain that I literally didn’t MOVE for fear a muscle somewhere would scream.. We’ve lain in each others arms, so indescribably sad and weeping, because they thought nothing more could be done (which also gave me feeling of rebellion and resistance I’ve never known before)

Every possible scan, biopsy blah blah , but not the Gallium 68. I just show up for everything, which has become routine, except for the time when I didn’t get to go home for a month plus, because I actually WAS dying…

We’re on first name status with Drs, nurses AND the best lunch lady in the whole wide world.

Now here we go again… Am I happy about it? Hell no! I am tired…I’m sick of this (no pun intended  ) but I also want to be 28 years young again and that’s not going to happen either! My life is beautiful..my poor body is exhausted, so I take naps…and watch Hallmark movies… When I get sad I cry, I also laugh til I almost pee my pants…I go “retail therapying” with my daughter and guess what….I’ve NEVER charged outrageously or maxed out anything…you know why? BECAUSE I AM ALIVE AND PLAN ON KEEPING IT THAT WAY!

Why am I writing this? To give HOPE ,even if it’s just 1 person… Yes, we’re losing ZEBRAS but every day people are dying. We ZEBRAS are front runners, the pioneers of sorts and we have a growing community.

We find each other and are here to give each other support, because, even though this cancer is like an air puppet, we’re all in the same boat! Look at and listen to “Sunny” Susan Anderson. How many years has she been dealing with this and being an activist?

This morning I woke with the sun in my face… NO ONE can take that away from me…and every happy moment YOU have is yours to relish and enjoy!

–Pamela ter Gast

9:51

Time to do some housekeeping and make a final challenge or two.

We have had 475 views so far today on walkingwithjane.org. That is 305 more than last year and 64 short of tying the all time record. We have two hours to come up with those views. It would be nice to get there.

In addition, we have nearly 3000 views on Facebook so far today and another 1000 on Google+.  People have been retweeting madly on Twitter for most of the day–but I have no reliable metrics for what happened there. I do know we had over 50 retweets during the day.

We have had over 700 views on our YouTube Channel and added an additional dozen subscribers during the day.

We didn’t do badly. I hope everyone has learned a lot so far today–and that you’ll learn a few more things before midnight EST.

10:19

Jillian was diagnosed with carcinoid/NETs at 29 years old. At the tome of her diagnosis, it had already spread to her liver. As she says, she has a lot at stake

I remember my first flush. It came immediately after eating breakfast one morning – the same breakfast I’d eaten for years. It was so jolting that I responded audibly to it. It was a hot, uncomfortable feeling accompanied by a raised heart rate, but with no sweat. It was such a sudden change in my body. One day the flushes weren’t there, and then suddenly, I couldn’t take even a mouthful of food without that terrible feeling.

Carcinoid flushing is caused by the five Es – epinephrine, eating, ethanol, emotions, and exercise.

As a woman, experiencing what I thought were hot flashes, I immediately went to a gynecologist. The doctor dismissed me and told me to drink more orange juice.

I was lucky in that it took me less than six months to get a diagnosis, but I had to fight hard for it just the same. I saw a variety of doctors in two different states before I heard the term carcinoid cancer for the first time in 2008. Despite test results suggesting that I had carcinoid syndrome, my doctors were still unwilling to believe it. They said I didn’t fit the profile and that carcinoid cancer was so rare that most oncologists would never diagnose even a single case. No one believed I had it until I had my first CT scan clearly showed liver metastases. I got the CT results the same week as my first wedding anniversary. I was 29.

I have since made a point to specifically tell gynecologists about carcinoid syndrome because I believe that with flushing as a symptom, most women will visit their ob/gyn first. I urge you to do the same.

–Jillian

 10:38

What is the importance of a single life?

Jane and I did something most people would find peculiar on our wedding night. We watched Star Trek II: The Wrath of Kahn. In retrospect, it seems a bit strange even to me. But we both loved Star Trek–and it was her idea, not mine. One of the opening scenes shows a Starfleet Cadet facing a no-win scenario in a simulator. Kirk does not believe in no-win scenarios. He is the only person ever to have beaten the simulator on that test. He cheated by reprogramming the computer.

Neither Jane nor I believed in no-win scenarios. All we asked for was a fighting chance–and we spent our lives turning no chance into a fighting chance.

I still do.

When Jane was diagnosed with this cancer no one had ever heard of we immediately began working to turn the no-chance her first oncologist believed she had into a fighting chance. The first step was to fire him and try the person we were originally scheduled to see. That woman had the same attitude. She sent us to Dana-Farber and Jen Chan. together,we pieced together a plan that would create a fighting chance.

Having a fighting chance doesn’t mean you always win. that’s what happens to Spock at the end of The Wrath of Kahn: he recognizes that in order to create a fighting chance for his crew mates, he has to give up his own life. “The needs of the many,” he says, “Outweighs the needs of the few–or the one.”

Long before we met, Jane and I had adopted that as another part of our core belief system. She kept teaching long after she should have been in a doctor’s office because her students needed her to be there. She insisted, even after her diagnosis, that I keep working because our students needed at least one of us–there were some for whom we were the parental figures they did not really have. I went back to work two days after her funeral for the same reason.

I wonder sometimes, if Jane knew what she was setting in motion in those last months–knew that because of what they learned from her, others would live. I wonder if she knew through the post operative haze the impact she was having on the doctors and nurses who worked with her. I think she may have known–may have known that every time she woke up she was pushing them to match her heroism.

She changed my life every day from the day I met her. She would tell you I changed hers as well. And we changed the lives of many students over the years. Why would that stop when she was dying?

It didn’t. But I will never know how much of what she did in the last days of her life was as intentional as the way she lived her rest of her life.

We said we would find a way to beat NET cancer. She said it on the day she was diagnosed. And we both vowed that we would beat it together–just as we had fought every other battle life had presented us.

How much does a single life matter? Sometimes it makes all the difference in the world.

11:30

walkingwithjane.org has had visitors from 11 different countries today. Barring a last minute surge, we will fall just short of our best day ever on the website. We’ve seen near or record numbers on all our platforms.

But records matter far less than whether we have reached people with the efforts of today. Did we save someone’s life today? Will someone take home a bit of knowledge or inspiration that will make a difference in their lives–and a difference in the lives of those around them.

Periodically, I run into students who tell me how much they loved my class. I always ask them the same questions: Did you learn anything useful from it? Did it make a real difference in your life? That is the real test of anything for value.

We have a half an hour left before i close up shop for the night.Please spend some time reflecting on all you have read and seen to day. How will those experiences shape the you that is becoming? How will they change how you react to not only those who have NETs, but to those who have troubles of their own?

Be kind to everyone, for you never know the burdens they are carrying.

11:40

My thanks to everyone who helped make today possible,especially to those of you who wrote things and made videos and shared pictures. You made what could have been a difficult day bearable.

My thanks, as well, to those of you who hung out with us all day, commenting on posts, pushing like buttons and sharing posts. It is a lot easier to do this when you know people are reading, listening and watching.

We will do a 12 hour general cancer Social Mediathon in the spring and–the gods willing and the creek don’t rise–another one of these next November 10.

For those of you in Texas and Massachusetts, remember, we have tyne entire month to work with.

But I’m taking tomorrow off–at least from this.

Midnight

Good night.