Starting the 24-in-24 Challenge
Good afternoon and welcome to our Walking with Jane 24-in-24 Challenge to benefit our Relay for Life of Greater Fall River team. I’m Harry Proudfoot, chairman of Walking with Jane and captain of our Relay for Life team. I’ll be here from now until midnight with a whole slew of information that I hope will encourage you to help us reach our goal of $2400 for April 24.
Normally, our focus at Walking with Jane is raising money for research on carcinoid/NETs and helping patients and doctors alike learn about the disease. But we also very much recognize that there are people out there who have other forms of cancer–and that regardless what form of cancer you or someone you care about has, that cancer brings with it all the pain, all the anguish, and all the stress that Jane and I went through when she was diagnosed in August of 2010.
The Challenge of patient support
While cures come from research, patients and their families have a whole host of other issues to deal with. It’s hard to stay positive when your hair falls out and your clothes no longer fit because of all the weight you’ve lost. It’s hard to focus on treatment when you are worrying how you will get to that treatment and where you will stay afterward if you’ve had to travel a long distance to get there–or if your treatment leaves you too weak or sick to travel more than a few miles afterward.
Support for patients and their families is an important part of cancer treatment. The American Cancer Society does a better job of that than nearly anyone–and they do it on a national scale. When most of us think about ACS we think about them as a research organization that funds the search for cures for the biggest killer in America.
Challenge supports more than research
But the truth is more than 60 percent of the money they raise each year goes to programs that support cancer patients and their families. They provide make-up and classes in how to apply it so that women can feel good about themselves even in the midst of sugary, radiation and chemo-therapy. When you hair falls out–a frequent side-effect of many cancer treatments–they supply wigs and scarves and lessons on how to look and feel better.
Those may seem like little things, but they are huge matters to someone fighting cancer and trying to maintain a positive attitude at the same time. I remember a nurse coming in and cleaning up Jane’s hair and face after one of her more difficult carcinoid attacks. We’d faced a grim war for several days–but that small act of kindness gave Jane–and me–a huge lift far beyond what either of us could have imagined.
The Challenge of getting there
But the American Cancer Society does more than help patients look good and feel better. The people I worked for were wonderful during Jane’s illness. If I needed a day to take her to Boston for treatment or an appointment, they were fine with that. Not everyone is so lucky. And were I hit with cancer and needed to get to Boston for regular treatments, I’m not entirely sure how I would get there.
Fortunately, ACS has a program for that: It’s called Road to Recovery. Locally, they run a bus out of New Bedford once a week so cancer patients can get to Boston for treatment. If the bus doesn’t work for you, they have a network of volunteer drivers who will take you there–or to a local clinic–from your doorstep, wait while you go to your appointments, and then return you home–all without charging you a nickel.
The Challenge of staying there
And if you need to stay overnight–or longer–there are the Hope Lodges, where patients and families can stay–again, without charge. And these are not flea-bag hotels. Rather, they are buildings designed and dedicated to cancer patients and their families. Unfortunately, there are only about 30 of them but they are near major cancer centers–and another 20 are in the planning stages.
Jane and I were financially very lucky in our battle with her disease. We had great insurance coverage and an insurance provider that supported us every step of the way.When I needed information about coverages–I handled all the medical and business contacts when Jane was sick because I wanted her to focus entirely on fighting her cancer–my calls were answered pretty quickly–and when they said they would call back about things they did not know the answer to, the always did.
The financial Challenge
But that is not everyone’s experience. Every day I read about patients having problems getting even simple answers to their insurance questions; every day I talk to people who have been denied coverage or who cannot pay for their prescriptions. Navigating all those things is very difficult.
As cooperative as my insurance people were, there were still days they made me crazy. I can’t imagine being a patient AND trying to navigate through that storm. Fortunately, ACS has a link for that as well. The Patient Advocate Foundation, an ACS partner, has a website whose only job is to help patients deal with those kinds of issues. ACS also offers an insurance assistance program
The Challenge for you
I don’t just support ACS because of the work they do in supporting research–though without the funding they provide for that carcinoid/NETs research would be even further behind than it is–I support them for the work they do to support patients and their families get through the most difficult struggle many of them will ever endure.
Parents facing cancer in their children don’t need to be worrying about where they will be staying after a treatment or operation; husbands and wives should not have to think about the fight that is coming with the insurance company over the other’s coverage when they need to be focussed on being with the one they love in that hospital room.
This first hour is about re-introducing you to an organization you think you know: the American Cancer Society. Please take a few minutes, right now, to go back and look at the links above. They will tell you about all these support programs in more detail. I think you’ll come away from that experience with a better understanding of why I think Relay for Life and the American Cancer Society work Relay supports are so important.
The Relay Challenge
Let’s talk a bit about Relay for Life before we go any further. Relay is the single biggest charity fundraiser in the world. The Greater Fall River Relay for Life is just one of thousands of Relays around the world raising money for the ACS’s work–but it is one of the heavy hitters here in New England, raising nearly $300,000 nearly every year for the fight against cancer.
That’s good enough to put our Relay routinely in the top ten in New England in recent years. And the money raised goes to the many different programs the ACS provides. I’ve listed some of those programs above, but here is a short video that does a nice job of summarizing those programs.
The beginning of Relay
Relay was started by Dr. Gordy Klatt as a young doctor. Now, many years later, he is fighting cancer in one of its truly challenging forms. He talks here about how he got the ball rolling.
My own involvement didn’t really begin until after Jane’s death–but we both knew about it before she got sick–and both planned to become involved with it after we retired. The local Relay had an impact on our struggle with carcinoid/NETS almost from the beginning.
First, An update of donations and such
So far today, we’ve raised $200. We received $100 in cash donations this morning. But we also got a note from an anonymous donor offering to match the first $1200 in donations we receive today. That turns that $100 into $200. You can make a similar thing happen when you donate to our Walking with Jane Relay for Life team between now and midnight–or whenever the matching money runs out. Make your donation now.
I am also pleased to announce that tickets have arrived for our Clam Cake and Chowder Dinner on May 22. While sales from that won’t count toward today’s matching offer, you can order tickets today either by calling me at 508-674-0279 or by emailing me at walkingwithjane@gmail.com
The personal challenge
“He thinks it’s probably cancer,” Jane said to me as she got out of the car. She’d gone to the doctor alone that morning despite my attempts to go with her. Jane could be pretty tough when she wanted things her way. It was an argument I had lost. It would be the last time I would lose that argument.
“But he says we won’t know for sure until after the biopsy–and that until the biopsy, it isn’t cancer.” She told me after he said that he had introduced her to Chris Palmer, one of the women in his office, and left the two of them alone. They talked for a bit–and then Jane had come home.
Chris was chairing the local Relay for Life, a group she had been among the local founders of–and Jane was not the first patient she had talked to following that kind of news. I owe Chris a huge debt of gratitude for what she did that day. And I owe her–and Relay–equally big time for helping me get through some of the days, weeks and months that followed Jane’s death. Much of that was in the future, though, on that ironically sunny July morning.
The personal challenge, part 2
Jane wanted a vacation to take our minds off the impending biopsy and what we were both pretty sure would follow. So we packed up the car and went back to the Lakes Region of NH where we had spent too few days on our Honeymoon nearly 21 years before.
Her legs were badly swollen, though we didn’t know why, and her insomnia was a constant presence. She had little appetite. She sent me out alone early one afternoon to have lunch. She was bloated and didn’t want to even see food. I sat alone at a table in a restaurant for the first time in a quarter century–and hated every second of it. I’ve no memory of what I ate–I simply absorbed it and hurried back to be with her.
I did not eat alone again on that trip. It felt too much like a precursor of life to come–and it was. The rest of the trip, if she didn’t feel like eating, I didn’t either. The last night, she wanted chowder but did not want to face a restaurant. I went down the road to a place that did take-out. I brought it back to the room and we curled up in the window seat and ate looking out over the lake.
The Personal challenge, part 3
The next morning we went for a final New Hampshire walk. It was among the first things we did after we were married. We were both aware of the symmetry. Jane took a couple of pictures of the lake and we recruited someone to take a picture of the two of us together. We were still using film, so there was no way to know how badly we had chosen our photographer.
I had the film developed the week after Jane died. The shot was taken from too far way and by the time I’d blown it up enough to see our faces it took on an impressionistic feel. We are standing with our arms wrapped around each other with brave smiles on our faces. Jane is thinner than I remember her.
It is the last picture I have of her–and one of only a handful with both of us in it. I framed an 8×10 copy and put it on the hall table where I see it every night before I go to bed. I share it with no one. It hurts too much.
The personal challenge, part 4
The biopsy was the morning after we returned home.
That was how we planned it. We didn’t want to have a lot of time to think about it. Of course we thought about it–even talked about it while we were away. But talking about it while sitting next to the lake had a dreamlike character to it. We were constantly aware that Jane was sick–and seriously–maybe even fatally–so.
But it was like we were on some kind of drug like the one they gave her for the biopsy. I was there when Jane woke up from that. She said she finally understood why people were fascinated by drugs–even became addicted to them: “You could tell me right now that I was going to die,” she said. “It wouldn’t matter to me. I just feel wonderful.”
There were times in the coming months we both could have used those drugs. That weekend, Jane had some swelling in her arm. She wanted to wait until her scheduled appointment to bring it up with her doctor since it was only a wait until Tuesday. But it didn’t feel right to me. I called the doctor Monday morning and he said the results were in and we could get both things done at the same time later that day.
Challenge Update
So far, we have an audience of about 80 people–most of it on Facebook. Please remember we have a dollar-for-dollar match going between now and midnight up to $1200–so your $10 donation becomes $20 for today only. Please share these posts with others. Hoping to see some serious upticks in the next hour. Donate now.
The personal challenge, part 5
It was a good thing we had not waited. Jane had thrown a clot in one of the blood vessels in her shoulder. If it dislodged, she might have a stroke–or worse. She would spend the night in the hospital for the first time since she was born. I came home alone that night and slept alone in our bed for the first time ever.
But I wish we’d been able to wait even another 24 hours. Hearing a cancer diagnosis–even for a minor skin cancer–is like nothing else I can describe. Hearing your wife’s doctor say she has a form of cancer he has never heard of is 1000 times worse at a minimum.
Learning a week later that your local, Dana-Farber Cancer Institute-trained, oncologist has never seen a case of it before and honestly doesn’t know much about it beyond the name is the kind of thing you only see in medical thriller films. And now you have to live in that world of specialists and experimental treatments and the increasing probability of death–not your own death, but the death of the person you love most in all the world.
The personal challenge, part 6
Jane and I were very fortunate when it came to doctors. Her doctor sent us to an oncologist who knew little about the disease–but who did know who the real experts in treating the disease were. And she had no qualms about getting us to them–and getting us there quickly.
We were also lucky that two of the best people in the field were right in our back yard. The Dana-Farber Cancer Institute is barely 60 miles from our door–less than two hours away even in rush hour traffic.
That Jane and Dr. Jennifer Chan took an immediate joy in each other’s company was simply the best situation possible. And Jen quickly assembled a great team of doctors who quickly diagnosed the heart issues the cancer was causing. The head of cardiac surgery at Brigham & Women’s hospital, a man others called the most creative heart surgeon they had ever seen in the operating room, agreed to be her surgeon. One of the handful of oncocardiologists (doctors who study the impact of cancer on the heart) in the world became her cardiologist.
We knew we were up against long odds. But we also knew that we had a team that was capable of shortening those odds. If beating carcinoid was possible at all, we were in a position to do so.
The Challenge of finding a doctor
Most people have a far tougher time finding a doctor when they’ve been diagnosed even with one of the more common cancers. Most cancers are life-threatening–and also mean you will likely spend a lot of time in the presence of that particular doctor. You are likely to have a far different relationship with them than you do with any other medical professional.
And increasingly, cancer treatment takes a team approach. You not only have to like your oncologist, you have to trust their ability to put together the right team for your particular cancer. Most of us lack the knowledge and expertise to find a good doctor. Most of us pick our primary care doctor seemingly at random–and hope for the best.
The American Cancer Society, whose work we are trying to support here today, has a great guide for how to go about choosing your oncologist–and your hospital. It’s just one more of the many support services they have for cancer patients–and like everything else they do, they put it out there for free for any patient or family member who needs it.
Challenge Update
The thermometer has started to rise a bit: we’re up $120 including the matching money in the last hour, bringing our total for the day to $320. Still a bit of a climb to $2400 ahead of us. And our audience has climbed over 100 for the first time today. Donate now.
The Palliative Challenge
When most people think palliative care they think about end of life care. While palliative care is a part of that scenario–making the dying patient as comfortable as possible in their final hours has a lot to be said for it–it is also a significant part of the healing scenario as well. If you break your leg, for example, the surgeon can set the bone and put it in a cast and you will heal. But you will heal more quickly if you have some painkillers prescribed that will keep you from thrashing around in agony. They will also help you get some sleep–which will also help you heal.
Jane was in palliative care from the moment she got her first octreotide shot on our first day at Dana-Farber. In some cases, that drug will actually slow or stop–at least for a time–the growth of carcinoid tumors. But it also can–and in Jane’s case did–alleviate the two worst symptoms of the disease: constant diarrhea and gas that is so bloating it limits how much you can eat.
I can’t describe how happy I was when she turned to me on the drive home and said she was hungry–and could we stop to get something to eat. At first, I thought she just wanted to make sure I ate something. But she attacked her hamburger in way I had never seen before–even when she was healthy. It was clear that little shot had made a difference. And that night–and the next morning–she was diarrhea free for the first time in months. That meant she actually was able to absorb nourishment from her food for the first time in a long time.
The challenge in the sixth hour
OK, folks. I’ve been writing since 9 a.m. and posting since noon. I’ve given you lots to read and to think about. I could use a little help here, so comments–good, bad or indifferent would be a really welcome thing at this point–not that I’m anywhere close to out of material yet. I’ve got things coming on chordoma, triple negative breast cancer and Merkel Cell Skin Cancer, as well as some more about ACS and the ways they provide not just research money but patient support.
Also, if you have your own ACS cancer stories to relate, feel free to post them both here and on our Walking with Jane Facebook page.
The personal challenge, part 8
We were at Dana-Farber Cancer Institute in Boston virtually every Thursday from September through November 11, the date of Jane’s last appointment before she went into the hospital for surgery. We would get up each morning and I would go off to work. I had said I wanted to stay home with her–take a leave of absence, but she would not hear of it.
“What would we do if you did that,” she asked? “Sit here and stare at each other?” The tone in her voice ended that argument before it could begin. The truth was, my staying home would have defined her in her own mind as an invalid. She had enough trouble with me gradually taking on all the household chores we had once shared as her body increasingly failed her. She told me she felt guilty about that. I told her she would do the same if it were me.
So I went to work, came home, did what needed to be done in the house, sat with her on the couch until she could sleep for a little. The insomnia got worse with each passing week–and the range of her movement became smaller and smaller. Increasingly, I did the shopping alone because her diarrhea meant even the short trip to the grocery store was fraught with peril. Then she gave up going down the stairs to the basement. Her crafting died. Her world shrank with every day.
Those of you who knew Jane remember the active person she was–and understand the psychic toll those new and ever increasing limits took on her. She did all she could to rein in her temper, as did I. No one can be in that close proximity to human suffering day after day and not suffer some enormous hurt.
One afternoon I was outside doing yard work. We’d had a sinkhole repaired some years back and that day my foot found a new one. All the anger came pouring out of me then. That anger had not subsided by the time I got back inside and I ranted about it for a few seconds.
Jane’s response was to let her own anger leak out a bit: “Why does this seem to upset you more than my health?”
That took me back a bit. And then I knew why. “I can’t let how I feel about that out. It makes me so angry…” I paused. I could feel it bubbling, begging for me to lose control. “I need to be able to think, to stay rational, so we make good decisions about this cancer. I can’t be emotional about that without hurting you. So I get mad at things that are safe to get angry at, like that damned sinkhole.”
We all pay a price when the people we love are sick. We pay a price when the one we love dies. Both hurt so badly that if we fail to contain the flames it will burn everything about both of us to death.
And now this challenge
Finding cancer answers begins with research, but curing patients begins with support. Help us provide both. Donate now.
The personal challenge, Part 9
There are times I wish I had known about the Hope Lodge program during the 28 days jane was in the hospital–but most of the time I am glad I didn’t. I spent the first four days with a hotel room I barely used. In fact, Wednesday night, when Jane was in what we would later realize was her first carcinoid crisis, I never left the hospital. I was awake for over 38 hours and would have gone more if it had been necessary.
After those four days, I moved into her hospital room. We both needed me to be as close to her as I could get. She was scared, she told me, and it was a comfort for me to be close by. It was a comfort for me as well. I’ve written about that ordeal before and don’t want to go into it in great detail here again tonight. Frankly, I’ve cried my way through so much of what I’ve written today that I’m not sure how much good I will be for anything tomorrow. Reliving her last hours is more than I can handle just at the moment.
But there was so much courage in every second of those days. The doctors saw it. The therapists saw it. The nurses saw it. Even the cleaning staff saw it. After she died so many of them talked to me about what they had learned from her–and from us. They told me how what they had witnessed in that tiny room had changed their lives. And I knew those were only a small portion of the lives she had changed in the years before her world had shrunk down to the size of a hospital bed.
The personal challenge, Part 10
Jane’s death, for all the hideousness that accompanied it, had a kind of stark beauty to it that came out of the courage she showed in facing it. She faced it patiently and calmly and forgivingly. Her body betrayed her–and I failed her in those last days more than once. But I did the best I could with the knowledge I had at the time–and her doctors made sure I had the best knowledge they had every step of the way. They let me sit in on rounds, listened patiently to my questions and thoughts and answered with the best knowledge we had at the time.
Jane spent her life in the pursuit and sharing of knowledge. The problem with her cancer was–as it is now–that we did not know enough to make the difference in her life we all wanted to make.
Two-thirds of all the people who are diagnosed with cancer survive the experience today. Not so long ago, it was ten percent. But for cancers like Jane’s carcinoid/NETs, for people like my friend Katherine, who died this winter of Triple Negative Breast Cancer, for those diagnosed with Merkel Cell skin cancer, and for too many others, there is no cure–nor anything that even looks like a cure.
One third of those diagnosed with cancer will die from it. Some will die because it was diagnosed too late for the cures we have to work. But most will die because their particular cancer has no cure.
The personal challenge, Part 11
In a few minutes–as I write this–it will be exactly three years, four months and 14 days from the moment Jane stopped breathing for the final time. From that moment to this my entire life has been bent to finding a cure for what killed her. I live frugally. At the end of the month, what I have finds its way, for the most part, into cancer research or patient support.
This is not the life Jane and I had planned for our retirement. It is not the life she told me she wanted for me if she did not survive the battle we had in front of us.
But I loved her too much and her death–even at this distance–still hurts too much. I would have no one die her death. I would have no one live this life.
That’s why I will sit here typing my fingers raw until midnight. It is why I cannot fully enjoy the daffodils that are blooming in my yard and why the same thrill Jane and I once shared at the first sign of a crocus is no longer there for me. When a dragon loses its mate its heart takes a wound so deep that only growing a new heart will heal it.
And to grow a new heart takes, it turns out, a very long time.
Challenge Update
We have moved closer to our goal in the last hour and, including matching money now have raised $520 toward our $2400 goal. We have just under four hours left to earn the rest of that $1200 in matching money that is on the table–and we won’t get it without your help. Please donate whatever you can afford tonight.
The personal challenge, Part 12
The American Cancer Society could do nothing to save Jane’s life. By the time Jane was diagnosed that ship had not only sailed, it had reached port, unloaded, reloaded and reached another port entirely. Without ACS funding, small as it was compared to what gets spent on the more well-known and more frequent cancers, we would have known even less than we did about Jane’s carcinoid cancer in August of 2010.
I remember going online to study up on the disease shortly after Jane’s diagnosis. The number of entries on Google did not even fill a complete page. The US government had only funded a single conference on it–and no research–since 1968.
But the Relay for Life of Greater Fall River certainly saved what was left of my life in the months after Jane’s death. I had yet to hear of the foundations working on carcinoid/NETs and while I knew I wanted to do the Jimmy Fund Marathon Walk, I had no idea that if we raised enough money we could determine where that money went specifically. I only knew I wanted cancer–all cancers, really–dead.
The people at Relay took me in. They gave me a place to put my anger and my energy. They held my hand when it most needed holding. They could never replace Jane–no one and no thing can ever hope to do that–but they understood what it was I had seen. Many of them had been cancer patients. Others had been spouses or parents of cancer patients. Soldiers say only someone who has been to war really understands it. The same is true of those who have dealt with cancer.
Unfortunately, the number of people who have dealt with cancer is large–and growing. One in three women will face a cancer diagnosis. Half of all men will face that same reality. That diagnosis will have an impact on their spouses, children and parents–and sometimes that impact will be shattering.
The best oncologists say that when one member of a family has cancer, they all have cancer. That is the size of the impact crater even a survived cancer leaves in its wake.
9 p.m. Challenge Update
As of 9 p.m., we have raised $740, including matching, toward our $2400 goal for today. we need $830 to claim what is left of the $1200 in matching money–that would get us to that $2400 goal for the day. And we have just under 3 hours to do that in. Please donate whatever you can.
The challenge of cancer
Jane’s death was not the first death from cancer in my life, nor–unfortunately–the last–but it was the most difficult to deal with. By the time I was 16 a close friend had already lost her father to it and a classmate I hardly knew had died from it. Things did not get better thereafter. On average, I have lost someone to cancer about every two years since I knew what cancer was.
The pace of loss has accelerated since Jane’s death–even if I eliminate the cancer patients I have encountered in my work since. Eight people I knew well enough to count as friends have died of cancer since Jane’s death. Double that number have been diagnosed and undergone treatment.
Part of that is the number of people I know. Jane and I were both teachers and knew thousands of young people and their parents. Part of it is that I am of an age where cancer becomes increasingly frequent. Part of it is the huge number of carcinogens we are all exposed to every day–and have been exposed to for years.
We can do something about cancer deaths. We can support cancer patients better. We can try to raise more money and recruit more good minds for cancer research. We can live a more healthy lifestyle and rein in our exposure to the things that cause cancer.
But, like everything else, we have to make the commitments necessary to bring about those results. And that commitment begins with each of us as individuals.
Final words and thoughts
Today has been pretty wrenching on multiple levels for me. I started writ in at 9 a.m. this morning after spending much of the last few days buried in the research that has to go into this kind of project. That research also brings me back into close contact with my least favorite experiences and ignites all kinds of memories of Jane’s last days and what I wish we had known.
There are two hours left between now and midnight, but honestly, I’ve said all I have to say. Oh, there are couple things I could raise about Merkel Cell skin cancer and chordoma, a very rare cancer that affects about 300 people a year–a good friend among them–but if the other nearly 6000 words have not convinced you to open your wallet, another thousand or so won’t do it either.
And for far too many of you there is a good reason not to open your wallet. I came into today believing that the economy was getting better. Clearly, from the number of personal notes I have received today, it is not better than it was a year ago–and for many of you it is worse.
So let me make this clear: your families and their immediate needs always have to come first. If you have bills hanging over your head that you don’t know how you are going to pay, quash that charitable impulse right now. You and your family need that money for the necessities of life. Let others in better circumstances carry the charitable weight for right now. Your day will come, but until then, please put your family’s needs way ahead of this on your priority list.
I’ll monitor things on the various sites between now and midnight and write responses to those of you whose comments say they need some kind of response. I’ll post updates about additional contributions that come through the door.
Thanks to all of you who have dropped in or hung around for a portion of the day. I hope you learned something useful about life, the universe and everything along the way. That’s the more important part of these things for me in many respects: giving people the information they need to make better decisions and live better lives.
Be well, all of you.
Harry Proudfoot
11 p.m. Challenge Update
As of 11 p.m. EDT we have raised $790 so far today for our Relay for Life team. this includes matching money. $1000 is just $210 away–and with matching money still on the table, we just need another $105 to get there in the next hour. Donate now.
