Walking with Jane will have its own team for this year’s Jimmy Fund Marathon Walk September 9.
This was not an easy decision to make. Last year I walked with the Caring for Carcinoid Foundation team. My original plan was to walk with them again this year and try to recruit some additional people to walk with us from among my friends and former students. The members of their team were particularly helpful in keeping me going all the way to the finish line last year. CFCF also has played an
important part in the decisions about how to build Walking with Jane, the vision I have for this organization, and this web site. And I hope I have had a similarly positive influence on what they are and do. I fully expect that we will engage in aa number of co-operative ventures in the future as we both strive to find ways to bring this form of cancer to its knees.
Unfortunately, the way the accounting is set up for the Walk, participating under the CFCF banner would prevent the money Walking with Jane raises from going to the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber. That fund did not exist last year so I was content to raise money for CFCF and let them invest it in whatever programs seemed best to them. This year we need to be concerned about the $20,000 minimum commitment per year we made to Dana-Farber when we created the Walking with Jane Fund.
By walking under our own banner we open up additional ways to raise money for the cause. By developing our own shirt, for example, we can solicit local and regional sponsors more effectively since we can offer them a place on our shirt at a price they can more readily afford. And since most of our walkers will have local connections those businesses will earn greater local name recognition. In addition, when I make our first direct mail appeal next week, we will be able to offer donors the inducement of a Walking with Jane Marathon Walk Team shirt. This will raise the value of those business sponsorships at the same time it gives donors something tangible for their support since, again, many of our donors will also be local.
From the beginning it has been important to me that we grow the money available for research beyond what was here when we started. If all we do is shuffle the money around from one organization to another we will fail to achieve that goal. For example, Novartis sponsors a large number of anti-cancer groups. I have no interest, however, in getting Novartis to sponsor us. There is a limited amount of money in their coffers for sponsorships. In sponsoring us they might well have to cut or reduce their commitment to some other group. The point is to find new sources of financing.
I write for a wide variety of social media on wide variety of topics ranging from grief and cancer to politics, religion and philosophy. Sometimes, the topic of carcinoid/NETs gets a brief mention in those places because it has driven so much of my work and thinking over the last four years since Jane’s diagnosis.
I’m still angered and hurt by Jane’s death…
People in those other forums sometimes ask about NET cancer and what it is and why it matters to me. But earlier today I was asked a question I had not heard before: Did the doctors’ failure to diagnose Jane’s illness in a timely fashion make me angry at them. It is not a question I really thought very much about until today–and I wondered why that should be.
Angry ignorance
There was a point I was very angry with the medical establishment. But really, I find it hard to stay angry at legitimate ignorance. At the time she could have been diagnosed, NET was not even talked about in medical schools because it was considered–based on the evidence they had at the time–so rare that few doctors would ever see a case in their entire professional career.
…I wondered why that should be.
That ignorance also meant virtually no money was spent on research, which meant our ability to detect the disease did not improve at all for about 40 years. And what we did not know about that kept both our knowledge of the disease and the size of the problem fatally limited.
A rational–not an angry–response
Things were so bad in 2010 that we spent as much on Jane’s care in the last four months of her life as we spent on research that entire year on the disease. Because Jane was an active science person–she taught high school physics, chemistry and AP biology all at the same time–we did all we could to get double duty out of the money spent on her care. It was the deepest look into an advanced case of the disease that anyone had had.
…I find it hard to stay angry at legitimate ignorance.
I’ve been told her single case doubled all the knowledge gained about carcinoid/NETs previously. Her death also resulted in the launch of the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute in Boston, a thing they had discussed for some years before that but not set up. Jane was the kind of patient people remember long after they are gone.
Angry ignorance 2
Jane died 43 months and 18 days ago. In mid-August it will be four years since we first heard the words carcinoid cancer. In that time, we have gone from about 10,000 cases being diagnosed each year to about 15,000 cases diagnosed a year. It isn’t that the disease has become more common; it’s that doctors are increasingly aware of the disease’s existence and we have begun to develop better diagnostic methods.
Jane was the kind of patient people remember long after they are gone.
In the last few years we have developed new types of scans that reveal the tumors where once all we could see were shadows that looked like artifacts that could be easily dismissed. We have at least one new blood test in the works as well. But the size of the disease is still unclear in terms of the number of people who may have the disease and not know it.
How angry does this make you?
The worst case scenario–based on an autopsy study of about 15,000 random bodies–is that, potentially, 3 million Americans have undiagnosed carcinoid/NETs. This would mean we have a major cancer in our midst we ignored for 40 years because we could not see it.
Jane died 43 months and 18 days ago.
But the truth is we really do not know how prevalent the disease is–and likely won’t for a considerable time yet. I certainly hope the 3 million number is off by a significant order of magnitude. We just don’t know–and have no way of knowing with certainty at this point.
Angry symptoms
We do know that about 10 percent of those diagnosed with the disease die each year–about the same number that we diagnose. The good news–if we can say there is good news about a disease that plagues its victims with nearly constant diarrhea and gas that causes extensive and painful bloating–is that many people live ten or more years with the disease with the treatments we now have.
We just don’t know…
The quality of that life is another question entirely.
Progress is slow
We have made some progress in treating the disease. Caught early enough, we can surgically remove the tumors before they begin to spread–and before the hormones and peptides they secrete can begin to do really significant damage.
… about 10 percent of those diagnosed with the disease die each year…
Unfortunately, we still only rarely find them early enough. We have some promising drug and radiation therapies that can slow the course of the disease and alleviate some of the symptoms, but nothing that looks like a real cure–not yet.
But there is progress
In 2010, we spent less than $2 million on carcinoid/NETs research in the US. The American Cancer Society did not even have a listing for the disease on its website, though about half of all the money spent on researching the disease came through them.
…we still only rarely find them early enough.
This year, the carcinoid/NETs community will raise–and spend–if the current trends hold, about $10 million. That is a significant increase, but still barely a rounding error on what we spend each year on breast, lung, or prostate cancer. There are carcinoid forms of each of those that are particularly deadly and particularly aggressive–and under-studied despite that.
Concrete example
To put that increase in funding in real terms, when Jane was first diagnosed, Dana-Farber had one full-time person dividing time between research and the clinic and one person dividing her time in the clinic between carcinoid and other gastrointestinal cancers and dividing her research time that way as well.
…still barely a rounding error…
Today, DFCI has two full-time people working in the clinic and the lab, two full-time researchers, two additional post-docs, and four lab assistants.
Some things to make anyone angry
Other programs across the country are seeing similar growth, but the numbers are still too small. Too many patients live so far away from a real specialist with experience with the disease that 700 mile and longer trips that insurance won’t pay for are not unusual.
…Dana-Farber had one full-time person dividing time between research and the clinic…
I know very few longterm patients who do not face significant financial difficulties as a result of their fight with the disease. We won’t discuss the battles they go through with their insurance companies over coverage because I can’t do so without the use of expletives one should not use in polite company. I will only say there is no stronger argument for single-payer healthcare in this country than the testimony of carcinoid/NETs patient stories.
Creating light in dark places
Today, I work on finding money for carcinoid/NETs research and raising awareness in the medical and lay population about the disease. I work and speak regularly with some of the preeminent researchers and activists in the field and continue to have a close relationship with the doctor who finally figured out what it was Jane had.
We won’t discuss the battles they go through…
Jane and I both knew that cursing people for their ignorance is a pointless exercise. We both believed that in a dark place the best thing to do is figure out how to create some light so you–and others–can see what you are doing.
Angry at no human
I’m still angered and hurt by Jane’s death, but I don’t blame any human agency for her death any more than my grandfather blamed doctors for the death of his first wife during the Influenza Pandemic of 1918-1919. We did not know enough to save either of them at the time–but someday, with enough effort, we will know enough to save others.
…cursing people for their ignorance is a pointless exercise.
But to do so means continuing to find new sources of income to keep growing the size of the cancer research pie. That’s not an easy task when it seems like everyone already gets hit by a thousand different worthy causes looking for money every day. But if we re going to see the day that this cancer dies, it is what has to be done.
The road ahead
Later this week, I’ll unveil two new events we hope will help us continue moving forward. Of course, you can also always visit walkingwithjane.org/contribute.
We’re gearing up for the Marathon Walk. When NET cancer takes one of our own, we don’t get angry, we get even.
Under normal circumstances, I’m a positive and optimistic person. I have to be to take on the things I assign myself. I’ve built two scholastic newspapers from scratch, worked to reform both an English department and, eventually, an entire school. I’ve worked with patients and doctors on a form of cancer that no one knows much about and that for decades no one–other than those doctors and patients–cared about.
It makes a better reality.
Jane used to claim that if I walked into a barn filled with poop that I would immediately smile because, despite the stench, I would assume there had to be a pony in there somewhere. But staying positive has become increasingly difficult over the last several months. I am increasingly angry and increasingly cynical at times, and I know from experience those are bad signs for me–and for those around me.
Mounting losses on the cancer front
In late January I lost one of my oldest friends–a person who figuratively had saved my life more than once when we were in high school–to triple negative breast cancer. Periodically, breast cancer gets held up as an example of a cancer we have on the run–and a cancer that we have used a working formula to raise awareness and research dollars about. And there are forms of breast cancer that we do seem to have a handle on.
…there had to be a pony in there somewhere.
But triple negative breast cancer is not one of those. It comes back–and when it does it comes back with a cruel vengeance. My friend died less than ten months after her recurrence was discovered–and barely a year after she was declared “cancer free.” We’ve poured billions of dollars into breast cancer research over the last four decades and it still kills too often.
Lessons in pain
Sidney Farber began his work on childhood cancer close to 70 years ago–and again, we’ve made great strides against it. Eighty percent of those diagnosed used to die of it; today, more than 80 percent survive. But I watched a young boy die of one of those cancers this winter, watched what that death did to his family. I see what it is doing to them now–months after his death–and know there are scars there that will never heal.
In late January I lost one of my oldest friends…
Then I look at Jane’s cancer and our comparatively puny efforts to make a difference. No one is spending billions to find a cure for it. No one is spending even hundreds or tens of millions. If, after 40-70 years of highly financed research done by thousands of the best minds in the country, we still have no reliable cure for all forms of breast cancer and/or all forms of childhood cancer, what chance do we have of finding a cure for carcinoid/NETs?
Cancers without dollars
Until recently, we spent less than $5 million a year on this form of cancer. This year, we may make it to $10 million for the first time. There are likely less than 500 researchers working full-time on understanding the disease–let alone killing it. There are days I feel like I am in a real life version of Mission Impossible–and that the secretary will shortly disavow all knowledge of our actions because the operation failed–that this mission really will prove impossible.
…what chance do we have of finding a cure for carcinoid/NETs?
I write fundraising letters and posts for the Internet–but there is only rarely a response. I organize fundraisers, but the most money any of them has ever brought in is still less than $5000. People tell me what I am doing is making a difference, but I don’t see it–not very often.
The stuff of nightmares
Instead, I see pictures of the patients I have met and hear the stories of their suffering and struggles. I remember the day Jane was diagnosed, the day she died–and every moment in between. I remember how we both tried to pick each other up on the days it all got to be too much. And I know the patients I meet and their families are going through precisely the same thing because, while we have learned much these last four years, too little has changed.
…I don’t see it–not very often.
So I am frustrated and angry and jealous of all those better-funded cancers. I am bitter because when I say “I love you” to my wife when I go to bed at night, the only answer is in my head–and it is the sad, post surgical rasp that is the only voice I still remember that belongs to her. I want, in those moments, to run as far from all of this as I can. I want to crawl into a bottle or a syringe or a bottle of pills and never come back.
No one fights alone
I won’t do that, of course. I’ll keep doing all I can to fight this disease–all I can do to kill it. But this is a bigger fight than I can manage some days, even with lots of help. I’ve seen too many deaths and too many people who hurt–and it isn’t getting any easier.
…too little has changed.
So if you can help, please do. We need walkers and golfers and runners, donors and marketers, people who feel and people who care. There is a phrase that has become my mantra: No one fights alone. It’s a great slogan. It makes a better reality.
Jane’s cancer killed her. There is no cure for it. Not yet. You can help find one.
I was reminded of this last week when an old friend came to visit for a few days. Her husband was diagnosed with Alzheimer’s less than two years after they got married. By the time his cancer took him he hardly knew who she was. They had less than ten years together—and he was seriously ill for most of them.
There is a price to pay for such a marriage.
By contrast, including the time we were friends and going out together, Jane and I had nearly a quarter century—and were married for 21 years, four months and eight days of that time. She was brilliant, caring, strikingly beautiful—and my best friend—as I was hers. Very few people get the gift that we were given.
Breaking good
We both loved teaching and learning. Together, we drove back the walls of ignorance, both in our own lives and in the lives of others. Just as importantly, we became role models for students who too often lacked them. Ours was a marriage young people aspired to, as were the lives we led in the public square.
Very few people get the gift that we were given.
Jane broke every stereotype for women there was. She worked in chemistry and biology and physics. She didn’t just tell her female students they could aspire to be anything they wanted to be—she showed them by being as good—or better—than any man in the sciences. She told them, “If I can be here and do this, so can you.” And then she showed them how.
Working marriage
Our marriage broke all kinds of other stereotypes as well. We shared every chore. We both cooked, we both cleaned, we both did laundry, shoveled snow, mowed the lawn, and tended the garden. Everything we did, we did by consensus. Neither of us had the final say on anything.
Jane broke every stereotype for women there was.
We had the best marriage two flawed human beings could have. We fought sometimes. We had significant, private, disagreements. But we loved each other too much to let those disagreements be more than shallow potholes in our lives to be filled as soon as we could manage. There were nights we went to bed angry, but we never woke up that way.
Cancer and marriage
We faced her cancer the same way we faced everything else in our lives: together. It would have surprised everyone who knew us if it had been otherwise. That I have continued that fight since her death should equally surprise no one.
We had the best marriage two flawed human beings could have.
But it does. I can’t tell you how often people ask why I keep doing this—why I don’t just move on with my life. They point to other spouses who cared for their husbands and wives passionately, right up to the end. But once the coffin was lowered into the ground they walked away from the disease responsible as though it never existed.
Marriage and death
And there is some truth to what they say. But there is also much they do not understand. Mourning does not end with the funeral service. It does not end in a month or a year. We get better at dealing with the empty side of the bed and the empty seat in the car. We get better at presenting a painless face to the world. Sometimes, we can even laugh.
I can’t tell you how often people ask why I keep doing this…
But the pain of loss is a constant that follows us everywhere on every day. We never know when we will turn a corner and be forced to fight back tears from a flower that triggers a memory of another time and place when we were truly happy.
Marriage and memory
And I understand too well the pain that sends people rushing away from the illness that took the one they loved. Every encounter I have with a NET cancer patient is loaded with emotional triggers. There is something about their eyes, something about the way they carry themselves, something about their faces and their conversations, that can take me back in an instant to Jane and her long struggle with a disease we could not name until four months before her death.
Mourning does not end with the funeral service.
There are days I wish I could walk away from the vow Jane and I took the day she was diagnosed to kill this disease. There are days I wish I could turn my back on those who still live with this disease—could somehow ignore their suffering so I could bury my own grief and move on with my own life.
Anniversaries of love and death
My contributions to the battle against carcinoid/NETs may not be much, but the scientists tell me they are making a difference. If I can save even one life from the death Jane confronted, it will also save a husband or a wife, it will save a son or a daughter or a parent or a brother or a sister from the throes of grief so many of us endure.
…I understand too well the pain that sends people rushing away…
In less than a month, I will observe the fourth anniversary of the day Jane and I first heard the words “carcinoid cancer.” Less than three weeks later, I will observe what would have been the celebration of our 25th year of marriage. Both days will be somber and painful in ways only those who have similar losses will understand.
And I will contribute a verse
Too often, lately, I feel the weight of those two dates approaching. I get up each morning with the best of intentions. But as the day winds down, I look at my list of things to do and discover too little done and too much left to do. I hear Jane’s voice in my head telling me it’s OK, but it isn’t. Not really. People are dying needlessly—suffering needlessly–and I’m not doing enough to help stop it.
Both days will be somber and painful…
I am crippled by grief—but I am still a lucky man. I had 21 years, four months and eight days of the kind of marriage few people get to experience for even one day. There is a price to pay for such a marriage. And I pay it every day.
A marriage like ours is special–but that comes with a price when one partner dies.
We cordially invite you to participate in the 2014 Hank Landers Charity Golf Tournament. As you may know Hank lost his battle with Neuroendocrine Cancer in June of 2013. He battled to the end and certainly did not give up hope that someday a cure for this deadly disease that affects so many will be rid from the planet.
The purpose of the event is to get together in Hank’s memory to raise money for cancer research. All of the proceeds will go to benefit Jena Landers’ team in memory of Hank, in the 2014 Boston Marathon Jimmy Fund Walk in Boston on September 21st.
Where: Crystal Lake Golf, 940 North Broadway, Haverhill, MA 01832, 978-374-9621
http://www.golfcrystallake.com/
When : Monday September 8th, 2014 1pm Tee Time
Cookout BBQ / Cash Bar to follow the event. Giveaways, Raffle and Prizes.
Please return with payment: Name_________________________________ Address________________________________ Phone__________________________________ Email___________________________________
I will play golf YES NO (please circle one) – Donation for Golf and Cookout – $150.00
COOKOUT Only YES NO (please circle one) – Donation for cookout only $40.00
Donations accepted $________________
Please make your checks payable to :
Matt Renola, c/o Hank Landers Charity Golf Matt Renola
P.O. BOX 33
East Longmeadow, MA 01028
PLEASE HAVE YOUR PAYMENT MAILED PRIOR TO THE RSVP DEADLINE OF SEPTEMBER 1, 2014
I took a pot of calla lilies to the cemetery yesterday for the 43 month anniversary of Jane’s death. The place is largely empty on a Thursday afternoon in July. It was not too hot or overly humid. But it was as lonely as it ever is.
Many things have changed in the carcinoid/NETs world…
Living people don’t talk to each other much in the cemetery—I cannot speak for the dead. Most of the time, if you see someone, there is a brief word, a gentle smile or nod. Over time, more than that may develop, but most of us are lost in our own thoughts, wrestling with our own grief. We talk to our dead and sometimes the conversations overwhelm us.
Lonely and inured?
Yesterday was gentler than the last three months have been—and more difficult. The difficult paradox is that an easy anniversary raises as many issues as the more difficult ones. I am an analytical creature; I want to understand why June was so hard and July so much less so. Does it mean August will be better as well—or will it be worse? I’ve been through this cycle too often to think the storm of grief is finally lifting.
…it was as lonely as it ever is.
The awful truth about grief, known by all of us who have lost someone dear to us, is the grief never leaves. Sometimes it lessens or changes shape. But it is always there—like the hole of a missing tooth or the pain in a phantom limb. We may forget our loss for a few hours in the company of friends—but it waits patiently for us to be alone again.
Good days, bad days, cureless days
Carcinoid/NETs can be like that, as well. Patients have good days, good weeks—sometimes even great months. Then they eat something, run into a piece of stress—or sometimes nothing at all. Their stomach bloats with painful gas, the ever-present partial diarrhea erupts in full form, the insomnia kicks in and leaves them even more tired.
…I’ve been through this cycle too often.
We have no more cure for NET cancer than we do for grief. We have palliative treatments that can make the symptoms more bearable for a time. But the patient knows eventually the tumors and the hormones they produce will again overwhelm those drugs and treatments. None of us talks about a cure. We talk about progression free survival, surgical debulking, and alleviation of symptoms.
The lonely battles
I watched Jane wrestle with the disease for years. Today, I watch other patients enduring the same grinding war against the disease. I see them searching for any treatment—from whatever source—that will relieve the diarrhea and the gas and the bloating and the insomnia and the flushing. They experiment with black raspberry powder, fight with insurance companies over coverage of octreotide and other somatostatin analogs, struggle with decisions about liver embolization and surgery. Except for a fortunate few, they have to struggle to educate their doctors and oncologists who know too little about the disease and how it works.
None of us talks about a cure.
We have too few specialists, too few options, too little knowledge.
An improving landscape
In August I will observe not only the 44 month anniversary of Jane’s death, but also the four-year anniversary of her diagnosis. Many things have changed in the carcinoid/NETs world in that time. We know more about the genetics of carcinoid tumors and understand better how they do what they do. We have new drugs in the pipeline that will, we hope, more effectively slow the course and symptoms of the disease. PRRT is now in trials in the US and may soon be more broadly available. Had we had the diagnostic tools and awareness of the disease we have now even ten years earlier, Jane might still be on this side of the grass.
I watched Jane wrestle with the disease for years.
She isn’t. I live daily with that knowledge—and that knowledge drives me each day to try to reach just a few more people—to try to make a difference in their lives and make their battle with NET cancer a little easier, a little less lonely, and a lot more hopeful.
I work to recruit walkers for the Marathon Walk each year. But no matter how many I recruit, at the end of the day, I am still lonely.
June gets insanely hectic between Relay for Life and ongoing preparations for the Marathon Walk. July, as a result, starts slowly for me as I try to recover from long days and sometimes longer nights. That doesn’t mean there isn’t news to report–it just means I’m too tired to make much effort to get it out there.
This is the first effort to combine the two.
This June brought several pieces of carcinoid/NETs good news with it. And our Relay performance was not too shabby either, as our Walking with Jane team was successful in keeping someone on the track for virtually the entire time, while raising over $9,000 for the American Cancer Society.
Video features latest on pancreatic NETS
But the good carcinoid/NETs news came in the form of two papers and a video. The video is a panel discussion led by Dana-Farber’s Matthew Kulke on the latest thoughts on pancreatic NETs, including diagnostics, treatment studies, and what those things may mean for patients with that form of the disease and their doctors.
…the symptoms can be so similar.
The total running time of the video is about an hour, but ONCOlive, which did the video, has broken it up into smaller pieces that focus on different aspects of the disease. The other news is it appears they plan to make these on a regular basis for several different forms of cancer. The idea is similar to one I’ve been working to make reality for several months.
News on finding primary tumors
One of the trickier problems in treatment of any form of NET cancer is figuring out where the primary tumor is. If the tumor originates in the pancreas, for example, its treatment is much different than if the primary is located in the small intestine. The difference between those two forms of the disease is especially tricky because the symptoms can be so similar.
Finally, there is news of a new treatment regimen that combines chemo and radiation therapies for carcinoid/NETs patients who have high levels of somastatin receptors that shows great promise. Peptide receptor chemoradionuclide therapy (PRCRT) was used on 68 patients in Australia with significant results that included both symptom reduction and slower disease progression.
June gets insanely hectic…
The therapy combines 177Lu-DOTA-octreotate chemoradionuclide therapy with fluorouracil (5-FU) chemotherapy. Both have been used separately with good effect. This is the first effort to combine the two. The results are preliminary as the data has not fully matured yet and the sample size is quite small.
While I’ve been out shaving my head and walking to raise money for cancer research and treatment, two new studies that point to improved treatment and a video that brings doctors and patients up to speed on current thinking on pancreatic NETs were released. All these events spell potential good news for carcinoid/NETs patients.
Over the last 72 hours I’ve lost all the hair on my head, learned about the latest progress in carcinoid/NETs research, spent time with four carcinoid/NETs patients, learned there are apps to help you find the nearest bathroom, counseled and consoled two people who are losing someone to cancer, walked through the night and into the morning at Relay, and come home again to an empty house.
Cancer is still in the world and my house is still empty…
To say those 72 hours have been emotional would be to state the obvious. To say I have learned a lot–about science, about the human spirit, and about myself and my role in the ongoing fight against cancer–in those 72 hours would also be stating the obvious. But sometimes the obvious is so obvious we miss what is really going on. Just because it is obvious doesn’t mean we notice it. Progress is often like that.
Progress through shorn locks
You would think shaving the hair off my head would not be a big deal emotionally. I’ve been slowly losing my hair for years. Just as the gradual greying of my hair didn’t bother me, that gradual hair loss was meaningless. It was simply a part of the aging process–and not a big deal.
Just because it is obvious doesn’t mean we notice it.
Going to the barber to have it all shaved off as the result of a Relay challenge I made to donors seemed like no big deal either. Then my hair was gone–and with it went a piece of my public persona. I was uncomfortable with the face looking back at me from the mirror because it was no longer my face. I felt somehow insecure about who I was and I was nervous about people seeing me in public. I was glad I usually wear a hat when I go out.
The progress of self-discovery
I’ve read about cancer patients losing their hair and how emotionally wrenching that can be. But until Thursday I had no real perception or understanding of what a person’s hair does to how they feel about themselves. I can’t claim to understand how my sister felt when her cancer therapy removed her hair–or how any cancer patient really feels when they confront that. I don’t have cancer and am not undergoing the brand of therapy that has that as its side-effect.
…with it went a piece of my public persona.
But I do have a much better inkling of what a patient feels than I had before. It is not just a physical manifestation of the illness, it is also the loss of the appearance that has been a part of the person’s self-identity: If the cancer and treatment are changing me like this eternally, how is it changing me internally–both physically and psychologically? Being bald has changed my perspective in some valuable ways.
Progress in treatment and understanding
Had losing my hair been the end of that 72 hours, that would have been enough. It was not. Instead, on Friday morning I went to Randolph, a town just south of Boston, for the New England Carcinoid Connection Conference. This is a patient information conference held every two years to bring patients and their lay caregivers up to speed on the latest progress in research and treatment of this disease.
Being bald has changed my perspective…
When Jane was diagnosed with carcinoid/NETs nearly four years ago, there was exactly one drug trial for any form of NET cancer available locally. It was for pancreatic NETs–which Jane did not have. Even if she did, she would not have qualified for the trial because the cancer in her liver was so advanced.
Patent progress
That is not the case today. Jennifer Chan, who was Jane’s oncologist, gave a talk on just the major trials that acre currently underway or that are close to releasing their results. There were more than a dozen total that she talked about in detail. There are more than 80 drugs and radiation treatments at one stage or another in the drug trial process, each of which has the potential to be a game-changer. The new immunotherapy also got some mention as having real potential to make a difference in patients’ lives.
…there was exactly one drug trial for any form of NET cancer…
I had lunch with four women with real interest in those potentials. They are all carcinoid/NETs patients, three of whom have been dealing with the disease for a number of years–and one of whom is newly diagnosed. I am always struck by the keen wit of carcinoid/NETs patients. They are uniformly intelligent people–and most are quicker to laugh than to cry.
Progress of a more mundane kind
At one of the break-out sessions, a patient talked about a list of public bathrooms in the US she had found online. At lunch, among much laughter, we decided this would be a useful app to build–if no one already had. Out came a smart phone and a web search ensued. there were, it turned out, more than a dozen such apps just for the US–and more for Europe, Asia, and Australia. With names like Sit or Squat and Where to Wee, we all had a good laugh.
I had lunch with four women with real interest in those potentials.
But for all of us, that topic was deadly serious as well. For carcinoid/NETs patients–who often travel with a change of clothes in the car for even short trips where they know where the bathrooms are along the route–that kind of app can be a lifesaver. I remember the occasions when Jane and I found ourselves in unfamiliar territory when the need for a bathroom arrived. I remember the real panic involved. I think all four of the patients either downloaded the app or planned to before they left.
The journey home
After lunch at the conference, I scurried out the door to head south while everyone else headed for the afternoon sessions. By 2:30, I was at the Relay for Life of Greater Fall River working with our team to finish setting up our site and prepping in the cooking area to serve clam cakes and chowder to the throngs of attendees as one of our on site fundraisers.There are always glitches and unforeseen events at any major undertaking–and this one was no different.
I remember the real panic involved.
But we never know what impact we are having on people’s lives–or what our role in those lives is. I spent two years as the local Relay chair. That meant making lots of speeches and presentations–and accidentally becoming a roll-model for people who are losing–or have lost a loved one.
Work in progress
I won’t go into the details of the situation. The people involved need their privacy at a time like this. But they wanted to know how to get through the days ahead–days they know will end in death for someone they care about. The truth is I am never sure what to say in these situations. I can only try to explain what I think I did with Jane: express your love in every tangible way you can, live second-by-second and minute-by-minute, and know that you are going to make mistakes and forgive yourself for them.
…we never know what impact we are having on people’s lives…
None of us is perfect and we all second-guess every decision we make after-the-fact. But we do the best with the information we have at the time and the best understanding we have of who our loved one is and what she wants. More than three-and-a-half years after Jane’s death, I am still plagued by second thoughts about the first time she slipped into a coma–as well as the second. The best medical advice I had–and my best understanding of what Jane wanted–guided those decisions, yet I still have moments when I think I should have let her go earlier.
A walker’s progress
As is my custom, I shouldered much of the walking responsibility in the small hours of the morning. Some of the time, I walked alone. Some of the time I walked with others. Sometimes we talked about Jane and others we have known with cancer. We talked about what we did wrong this year–and what we got right–in this year’s Relay campaign. We talk about progress. Sometimes, especially with the younger people, we talked about their hopes, their dreams, their aspirations and what they are learning and thinking about.
…I am still plagued by second thoughts…
And after we had packed everything up and dropped it off here, I went back to the Relay site and walked three more laps by myself. At the end, I stood up on the small rise behind where our encampment had been and looked out over the now largely naked terrain. Then I came home, showered, brushed my teeth, and fell into bed 18 hours.
Growth’s slow progress
I slept and dreamed and physically recovered. But I remain emotionally raw. Cancer is still in the world and my house is still empty of all but reminders of my beloved.
…I went back to the Relay site and walked three more laps by myself.
But my hair will grow back–and the topiary heart that died with Jane and that I replanted after her funeral is three-quarters of the way to filled. That is also progress of a kind.
I leave in a couple hours to help set up our Walking with Jane site for the Greater Fall River Relay for Life. Tomorrow, I head to Randolph for the New England Carcinoid Conference before returning home for Relay Friday afternoon and Saturday.
…we want to reach journey’s end.
This morning I went to the barber to have my hair cut down as far as he could get it before coming home to finish shaving my head. I challenged donors two weeks ago to donate to decide the fate of my hair for this event. Needless to say, they went with bald. It feels strange having no hair on my head.
Our turn to hit
But that is the lengths I will go to to take cancer down and draw attention to carcinoid/NETs in particular. Our Relay site will be wrapped in zebra colors and include zebra flags and pin the tale on the zebra. It is all about raising awareness and getting people to think beyond saving second base.
It feels strange having no hair on my head.
For too long, carcinoid hasn’t even been allowed to bat. Two years ago, at a major cancer conference, when I shouted out zebra at one point, no one knew why my answer should count–including the people in charge. That has begun to change–but only begun to. It will take a lot more effort from all of us to put us on the same playing field with breast cancer, lung cancer, and prostate cancer.
Moving forward
After Relay, I hope to get a few days off, but getting those days will be tricky. I have sponsorships to garner for our Jimmy Fund Walk effort, paperwork to get ready for our lawyer for our final approval from the IRS, a yard sale on July 4th and a t-shirt to finish designing.
…carcinoid hasn’t even been allowed to bat.
But I also know I need some time to think about things other than cancer. For patients and caregivers in the middle of the fight of their lives, that is not an option. Working to fund a cure, however, is a journey of 10,000 miles. Cancer may never sleep–may never take a day off. We humans have no choice, though, if we want to reach journey’s end.
I shaved my head in answer to a Relay Challenge. What would you do to kill cancer?
Thirty-three people in the US die of carcinoid/NET cancer, on average, every day. They are young people, old people, people in the middle of their lives. Some have children, some have grandchildren, some have spouses, some have living parents. Almost without exception, they leave unfinished lives–lives interrupted sometimes years before by diarrhea, difficulty breathing, the beginnings of heart problems…
You come, too.
They also leave behind 33 families, 33 sets of friends, 33 girlfriends, boyfriends, wives, and husbands. They create 33 more funerals, 33 more empty houses and apartments, 33 more empty rooms–and far more than 33 shattered lives. I know too well what it means to live in a suddenly empty house, what it means to turn to tell someone a discovery and find they are no longer there–and will never be there again.
Keeping promises
I try not to think about what might have been. I try not to think about the plans we made. I try not to second-guess the decisions we both made both before and after Jane’s diagnosis. Doing any of those things too often is a road that leads to madness–and that is a road I cannot travel. I made promises to Jane that I want to keep. I made promises to myself that I want to keep. They are promises I cannot keep if I allow myself the luxury of that brand of insanity.
…33 girlfriends, boyfriends, wives, and husbands.
It is three days before the Greater Fall River Relay for Life. We have not raised the amount of money I wanted to see us raise this year. I know how important the money is we raise for that group. It has little impact on carcinoid/NETs research. But it has a real impact on the lives of patients as they wrestle with trying to get treatment, trying to find someplace to stay while they receive treatment, trying to keep a positive attitude as their hair falls out and their weight drops.
Caring for the orphans
I care about all forms of cancer, but I care more about carcinoid/NETs more than the others. It is one of the orphans that too few people or organizations really care about–or even know about. A friend who lives with this cancer was asked to speak at an American Cancer Society event last year. She is, by all accounts, a powerful and impassioned speaker. She accomplishes more in a day than I do in a week.
I made promises to Jane that I want to keep.
But her speech did nothing to bump carcinoid/NETs closer to anyone’s radar. Thirty-three lives a day apparently do not make a splash big enough to be noticed, let alone remarked upon. Patients with carcinoid/NETs remain as faceless today as they were the day Jane was diagnosed. Because the symptom of their disease is not a lump or a strange weakness but endless diarrhea, bloating and gas–things that most people are embarrassed about–even most patients don’t want to talk about it. They hide their symptoms as best they can from both doctors and spouses.
What does it take to make 33 people matter?
That silence is deadly. Early diagnosis is the only way we have a hope of curing this monster. Finding additional treatments means finding money for research, but no one wants to be a poster child for non-stop diarrhea. Thirty-three people will be dead from it as a result by the end of the day today. Thirty-three people died yesterday. Thirty-three will die tomorrow and the next day and the next day and the day after that and the day after that…
They hide their symptoms as best they can...
When someone enters a crowded mall, a movie theater, or a schoolhouse and shoots 33 people, we pay attention–if only for a moment. Carcinoid/NETs does not even get a brief blip of attention. But more people will die slow, messy and agonizing deaths from it this year than will die in all those headline-producing mass shootings combined.
Falling behind the need
We are 89 days from the Boston Marathon Jimmy Fund Walk. We have a team in that event that walks exclusively to call attention to–and raise money for–carcinoid/NETs. I started raising money and recruiting walkers for that in February. We are far from where we need to be to reach our goals for both walkers and amount raised at this point.
Thirty-three will die tomorrow…
Missing our Relay for Life goal is a small thing. What we raise is less than a rounding error on what that event raises world-wide. But missing our goal for the Marathon Walk–as small as that goal seems when compared to what we spend on cancer generally–will have a substantial impact on carcinoid/NETs research. When even a Phase I trial can cost $2-3 million–and the total carcinoid/NETs research budget for the entire US amounts to less than $10 million–every dollar truly does have a substantial impact.
