Jane’s father was admitted to the hospital Tuesday night after he seemed largely unresponsive and confused during the day. After a round of tests in the ER, we were told it appears his body is beginning too shut down.
His daughter Gail and I spent the day with Hank yesterday. He seems both somewhat weaker today than he was the night before and significantly more mentally confused and lost. We spent much of the afternoon talking with four different doctors, including the hospitalist and each of the specialists involved with Jane’s dad’s case.We also spoke with a social worker and representatives of two different hospice groups as potential managers for his end of life care. Gail also talked this morning with the nurse who supervises her dad’s dialysis sessions.
Given those conversations and the significant decline in Hank’s condition in the last 2-3 days, we are ending his dialysis treatments. His quality of life has declined below the level that he would have any interest in continuing his life. He was already on a DNR and had made clear to both Gail and me where the line was beyond which he would want treatment to end.
Today, on the 57 month anniversary of Jane’s death, we will pick a hospice group and make arrangements for him to come home so he can die in familiar surroundings in as much comfort as we can provide him.
As some of you may know, Henry was diagnosed with Stage 4 prostate cancer last year that had spread to his bones. Those metastases have spread well into his rib-cage according to the CAT scan done Tuesday night. He has been on a hormone treatment for this for nearly a year–which is about the time-frame the oncologist here thought it would work, given how far it had already spread at the time of diagnosis.
The doctors have assured us that death from renal failure–he is end-stage there as well–will be a much easer death than waiting for the bone cancer to claim him. They tell us ending dialysis will result in him sleeping more and more until he simply drifts away.
How long that death will take is unclear. Estimates range from a few days to a month at the outside. As I said earlier–and this was reinforced by what the doctors said to us yesterday–his body appears to be shutting down. It’s been fighting a myriad of problems for many years and seems finally to be saying it has had enough.
Needless to say, my work on Walking with Jane will be curtailed significantly in the coming days. I will return to this work as soon as I can, but for now, other priorities must take center stage.
Please give those you love an extra hug or two in the coming days.
Walking with Jane started as a labor of love and vengeance a bit over four years ago. My wife was dead at the hands of a disease that no one seemed to know anything about and that almost no one seemed to be doing anything about. A zebra had killed my wife–and no one seemed to care outside of a small circle of friends.
People’s lives depend on it.
Walking with Jane really started at 30,000 feet a few days after we buried Jane. My youngest brother convinced me staying home alone over Christmas was a bad idea, so I found myself on a plane to Seattle to spend the holiday with my father, who had lost my mother to Alzheimer’s barely 11 months before.
Opening movement
I wrote the first draft of a pamphlet on NET cancer and IBS that night and began making notes on creating a foundation to raise awareness and money for NET cancer research. By the time I returned home, I had set out on paper the basic goals for that organization and finished the second draft of the pamphlet. The pamphlet went off to Jane’s oncologist, Jennifer Chan, for her comments.
A zebra had killed my wife…
The notes on the foundation went into a drawer. We were a few weeks from final exams and I had a backlog of papers to grade that felt about a foot high–and probably was. Then there was a new semester to start and my own grief to deal with as the shock of loss began to wear off. No one tells you that the real grief finally arrives for the spouse just about the time everyone else recovers. They think you’re fine just about the time you discover you’re not.
Second movement
Walking with Jane started as a Relay for Life team that needed a name. I’d planned to go to a Relay and just walk all night. Friends and students decided this sounded like a suicide march and suggested forming a team to support me–and keep me off the track enough that I wouldn’t be dead by morning. Once we had a name, we needed a logo for the t-shirts I wanted our team to wear.
The notes on the foundation went into a drawer.
Morgan Bozarth, an art teacher who was the last person Jane served as mentor for, found a student who wanted a project. Bonnie Cohen took a photograph I had taken of Jane in the Blue Hills one summer and spent a few days sculpting the logo that adorns not only our t-shirts and this website, but lots of other stuff as well.
Third movement
I knew one key to success was to have a fully functional, modern website. In May, I asked Carissa Broadbent, who ran our school newspaper website and was setting up her own design business, what it would cost to get her to create walkingwithjane.org. She wouldn’t let me pay her for it.
…this sounded like a suicide march…
We launched this website four years ago tonight–on what was the 22nd anniversary of the day Jane and I got married. I wanted something positive to happen on that date in 2011–something that would help me get through what I knew would prove an insanely difficult day emotionally. I have wondered about the wisdom of that decision since.
Creating value
I also wondered for a long time about the wisdom of even having a website. Walkingwithjane.org requires a great deal of care and feeding. And for a long time we had real difficulty attracting an audience beyond the constant attacks of spammers. For the first 2.5 years, we had trouble drawing flies.
We launched this website four years ago tonight…
Part of that was developing an identity that worked. I’ve never been a NET cancer patient–I’ve been a caregiver and a grieving widower. I’m not a scientist. I’m a writer and journalist. For a time, the site was too focussed on my grief and anger. There was an audience for that–but not the audience I really wanted to aim things at.
Understanding audience
Then, about 17 months ago, a patient asked a really difficult question: How do you prepare your spouse for the day you will no longer be there? What had Jane and I done to emotionally prepare me for the day Jane was no longer there? Somehow, her question gave me an understanding of the patient side of things I had not had before. And from that moment, the site took off.
I’ve never been a NET cancer patient…
Over the last four years, walkingwithjane.org has attracted 52,885 views. In the last 12 months, we have had 23,319 views of items on this site from about 8000 different visitors. That’s an average number of hits per month of about 1940. We have become a goto site for trusted information written in layman’s language about NET cancer. That was one goal I set on that airplane coming back from Seattle on New Year’s Eve in 2010 less than three weeks after Jane’s death.
Love and vengeance, redux
I wish I could say everything has worked out as well for the other goals I set over the week I was in the Northwest. Raising the money it will take to kill this disease is proving a much harder knot to unravel than I anticipated. But we will figure that piece out as well. We have no choice. People’s lives depend on it.
That was one goal I set…
I am no longer in this fight for vengeance. I’ve met too many people afflicted with this foul thing. I want them to live. I want them to have the time together Jane and I lost on that cold December night in Boston. It’s not about vengeance. It’s about love. We’re going to kill this thing.
Somewhere along the line, I lost the idea of vengeance and supplanted it entirely with love. Working on this website and trying to understand its intended audience is one reason for that change in attitude.
A “real” marriage is an insanely difficult thing to try to explain to someone who has not experienced it. I was reminded of that last week as I worked my way through one of the books in the Outlander series currently being serialized on television. Late in the fourth book, one of the characters describes the difference between a real marriage and one based on obligation. The difference isn’t pretty.
It is left to me to make them real.
But the character misses the point. She sees a real marriage as involving only a romantic kind of love. Her mother points out that real love creates obligations–and that obligations are just as important to a sound marriage as romance is. But even she does not entirely get what marriage is about–or at least she doesn’t manage to explain it very clearly. In some respects, I don’t think we can truly understand marriage until one member of the bonded pair has died.
Marriage after death
Jane and I had a good marriage. We were each other’s other half. We understood romance. We understood partnership. We understood love and the obligations to each other love creates. Then Jane got sick and we faced that the way we faced everything else in our lives–together.
The difference isn’t pretty.
And then she died and I discovered an entire piece of marriage I had not conceived of before–and that I don’t think she had either. Love does not die when one of the partners ceases to be. Rather, at least for the one who still lives, it continues. It shapes who we are and who we become. It colors our perception of every subsequent experience. And it makes us a special kind of crazy. Marriage, it turns out, may not entirely end with death.
Remembering the last anniversary
Today is our 26th anniversary–the fifth since Jane’s death in December of 2010. Intellectually, five years is a long time ago. But emotionally, it feels like mere minutes. We both knew there was a good chance that day would be the last anniversary we would truly celebrate together. Seven days later we would make our first trip to Boston to see an oncologist specializing in Jane’s unique form of cancer. We knew we were in trouble.
It shapes who we are and who we become.
But we tried to pretend for each other that day that nothing was different–that we still had years ahead of us. We both failed badly in those attempts. We went out for lunch. Jane tried to eat–and couldn’t. We tried to walk more than the distance to the car, and Jane couldn’t. Every failure hurt her. Every failure hurt us both. But we kept smiling and kept trying.
Trying for normal
We had neither of us slept well for a long time. I have not slept well for a long time. Her slow decline into death haunts my dreams. Her rasping voice in the last days of her time in the hospital haunts my waking hours. It is the only version of her voice I can still hear–and I suspect I will hear it until I die. And perhaps I will hear it even then.
Today is our 26th anniversary…
We made that last anniversary as normal as we could. We exchanged gifts and cards when we woke up. She read my anniversary poem. I fixed us our traditional anniversary breakfast of chocolate croissants and tea. We talked about our hopes and dreams for the year ahead.
The present
Jane never asked me for a particular present for our anniversary until the last one. She had seen a sterling silver bracelet on a leather band. The bracelet framed a single word: “Believe.” It was a message to us both.
I have not slept well for a long time.
It is the one piece of her jewelry I have never put away. It sits on a mirror on a bookcase in the living room, amid our own glass menagerie. It sits between Jane’s Pegasus and my dragon–the symbols we had adopted for ourselves long before we met. Behind it stand three glass unicorns, pawing the air as they prepare to gallop. To the right is a tiny glass beaker, to the left, a small royal swan. Every piece held meaning for us–every piece still has meaning for me.
Moving forward, not on
Every day, I remind myself, I yet have work to do in the world. And every day, I miss her. I miss the shared goals, the shared dreams, the shared aspirations–shared in a way they cannot be shared now. And some days, it is all just too much. I want to stay in bed and stare at the ceiling. But I can’t. And I won’t. Jane won’t let me–and neither will I.
It was a message to us both.
That’s not to say I don’t take time to cry when I need to, take a day to sit by the ocean and watch the waves come in or climb to the top of some hill or mountain and sit and watch the sky. But Jane told me I could not stop doing the work just because she was no longer there to do it with me. We both had dreams. It is left to me to make them real.
There are few pictures of Jane and me together. That small library does not deny our marriage. It only underlines how much Jane hated having someone else take her picture.
One of the things I said I would do last winter when I was writing about goals and planning was I would share the letters I write for fundraising with the NET cancer community in the hope those letters would help other groups besides Walking with Jane raise money to help their regional NET cancer programs.
What follows is my summer fundraising letter. By modifying one paragraph and the link in the last paragraph, you can use it with your NET cancer fundraising efforts. You have my permission to do so, as long as you use it for that purpose. I have avoided using headers and the like to make the job of using it as easy as possible.
The Letter
Dear friend,
Jane’s death haunts me. I still wake up in the middle of the night, reaching for her and finding nothing there but a pillow. I still hear the words her doctor said the day she was diagnosed. I still hear the hospitalist telling me there was nothing more to be done.
I still remember telling her we were letting her die because there was nothing left to try
Ten thousand people were diagnosed with NET cancer in the US the year my wife was diagnosed with that incurable and nasty form of the disease. Last year, 15,000 people got the same diagnosis.
We don’t know why the numbers have shot up so dramatically in the last five years. Part of it may be more doctors are aware of the disease than was the case then. Part of it may be the new methods we have to detect it. Or maybe something else is going on. We just don’t know.
And while we have new treatments coming online to ease the symptoms of this rare form of cancer, we are not significantly closer to a cure than we were five years ago. Every new thing we learn about it seems to further complicate the situation. I increasingly appreciate the adage among NET cancer doctors: “When you’ve seen one case of carcinoid/NETs you’ve seen one case.” Too often, what we learn from one patient does not translate well to another.
But neither I nor the doctors and researchers are giving up. There are too many patients—120,000 of them—who desperately need a cure. They want to see their children grow up, see them graduate from high school, go to college, get married and present them with grandchildren. They want to grow old with their spouses and celebrate all those anniversaries Jane and I didn’t get.
So, once again this year, I will take on the 26.2 miles of the BAA Boston Marathon course on September 27 as part of the Jimmy Fund Walk. As always, every penny I raise will go to carcinoid/NETs research at the Dana-Farber Cancer Institute.
I’m not a scientist. I’m not a doctor. I’m not a researcher. I’m a man who lost his wife—a man who doesn’t want others to go through what my wife went through—the insomnia, the flushing, the constant, endless diarrhea that is the lot of too many NET cancer patients. And I don’t want anyone to go through what I went through then—or what I go through now.
We need your help. Please give what you can. Help us kill NET cancer before it kills someone you love.
Sincerely,
Harry Proudfoot
Chairman, Walking with Jane
p.s. Even if you can’t give, please share this with people you know.
Listening to the WEEI/NESN Jimmy Fund Radio Telethon is something Jane and I did every year. We did what we could to support the Dana-Farber Cancer Institute through that fund regularly. We never thought either of us would need the very special services they provide cancer patients. Cancer did not, seemingly, run in our families. It was just the right thing to do.
…we still have work to do.
Then Jane’s sister was diagnosed with Stage 0 breast cancer. It was caught so early and dealt with so quickly locally that DFCI was never seriously considered. That was true, in part, because of the research DFCI and other major cancer centers had done. Then we discovered Jane’s NET cancer and DFCI became the medical center of our universe.
The fairy tale that isn’t one
It’s one thing to hear the patient stories over the course of these two days. It is something else to live in one of those stories. The dedication of the doctors and the courage of the patients sounds like something out of a Disney fairy tale.
Cancer did not, seemingly, run in our families.
Then you become a patient–or your spouse or your child does–and you discover just how special those doctors, nurses and support people really are. And you discover the deep reserves of courage you have and your spouse has and your children have. Human beings are amazing creatures when everything is on the line.
Doctors and nurses
I’ve walked people to the end of their lives more often than I like to think about. I’ve sat with too many people on the death watch, held too many hands in the final hours of life. I’ve met doctors who, even in those circumstances, were extraordinary. And I’ve met a few who needed serious sensitivity training.
Human beings are amazing creatures…
But I’ve never met a nurse who was not the soul of compassion at those moments. And I’ve never met a doctor at DFCI who was not just as compassionate and caring and dedicated as the best of nurses. At DFCI, even the people behind the desk making appointments went through the compassion line three or four times more than the rest of us.
Case in point
I’ve told the story of our first visit with Jen Chan several times: how she and Jane seemed to immediately hit it off; how she immediately set up an initial octreotide injection and scheduled an appointment with an onco-cardiologist before we left the exam room.
…I’ve never met a nurse who was not the soul of compassion…
And I’ve told how she called just after we got home that night to talk about ideas she’d had about ways to proceed since we left her office. But I’ve never put it in the context of what the rest of her day must have been like. Jane was not the only patient she saw that day. She saw at least 16 other patients–not all of them NET cancer patients, since she was not working exclusively on NETs at the time.
Odds against
And Jane’s case was not a typical NET cancer case. Jane’s cancer was more advanced than nearly any doctor had ever seen. Her lifestyle had kept her alive with a liver that should long since have killed her. Only a handful of patients lived long enough to develop the heart problems she had. Her cancer was so far advanced, DFCI had turned her down for a drug trial.
…she and Jane seemed to immediately hit it off…
And Jen had two small children waiting for her at home. I can see her tucking them in for the night before picking up the phone to talk to us–two people she had just met that afternoon. Even now, I am awestruck by the person she turned out to be–the kind of person who would put the turkey in the oven and come see Jane on Thanksgiving morning when she didn’t have to.
Skin in the game
People mistake me for a hero sometimes. They think I’m being modest when I say I’m not. The truth is, when someone we love is in trouble, the adrenaline kicks in and we do what we need to do. I see it in a former student whose son was diagnosed with brain cancer and whose wife is now fighting breast cancer. I hear it in the voices of the parents on the radio talking about their child’s cancer. And I hear it in the voices and actions of the patients it is my honor to work with.
…I am awestruck…
But all of us–patients, spouses, children, and patients–have enormous emotional skin in the game from the start. We are, literally and figuratively, fighting for our lives and the lives of those we love. My life and dreams ended the day Jane died. Every day since has been about trying to find new dreams–trying to find a new life–absent her presence.
Defining unconditional love
But when Jen came through that door on that September morning, she took us into her heart the way we took our students into ours on the first day of school. It was something neither Jane nor I expected. We’d dealt with doctors for years, knew–and-to a degree understood–the reason they often stood behind a professional distance: patients die–patients with cancer more often than others.
My life and dreams ended the day Jane died.
Since Jane’s death, I’ve met a number of Jen’s colleagues at DFCI. They are all cut from the same cloth Jen is. They care about their patients the way nurses do–with hearts left open to the cold reality of death. I write about the need for unconditional love even for strangers. They practice that love every day.
Jealousy and joy
Sometimes, it’s hard listening to these stories on the radio over the course of these two days. Part of me is jealous just as part of me rejoices about the progress and cures that have evolved over the 14 years since they launched this fundraiser. The stories of the husbands and wives who speak on the air together about successful treatments and what those treatments have meant to them make me cry.
They practice that love every day.
But I know the fight is far from over. There are still too many stories that end badly–so many stories that end in a graveyard–so many cancers we have no answer to. And I know we still have work to do.
The Jimmy Fund Walk is not the only way DFCI raises money for cancer research. The last two days, WEEI and NESN have run a radio telethon for that purpose.
There is exciting news on the NET cancer front—and Dana-Farber is on the cutting edge of that news. Ten days ago, Lexicon Pharmaceuticals released some results of the TELESTAR Phase 3 of telotristat etiprate. The trials of that drug, run by Matt Kulke and Jen Chan, were successful to the point FDA approval of the first new drug since 1999 for carcinoid syndrome seems likely sometime in 2016. You can read more about it at walkingwithjane.org/news.
My eyes are firmly on that prize.
The research that led to that drug doesn’t happen without the effort of people like us raising the unrestricted money to fund it. And without the role we play, the resources for the next big breakthrough may not be there.
Raising the stakes
Telotristat is not a cure for carcinoid syndrome—or for NET cancer. But it will mean a dramatic improvement in the quality of life for many patients. And it may help buy them time to take advantage of the next big thing when it comes.
There is exciting news on the NET cancer front…
But we need everyone to lace up their sneakers in the days ahead so that we can find a cure to this awful disease—and I don’t need to tell most of you how awful that disease is.
Reason to sign up today
We have just 45 days to go before Walk Sunday. So far, we have 19 people officially on the team. That’s just one-third of our goal for the Walk.
…we need everyone to lace up their sneakers…
Many of you have said you plan to sign up officially soon. If you sign up before tomorrow, August 14, at midnight, the Jimmy Fund will mail me your Walk T-shirt and I will deliver it to you, along with our team shirt for this year, before the Walk. Otherwise, you will have to stand in line on Walk Day to get the official shirt.
By the numbers
As of today, we have officially raised $17,020 against our goal of $80,000. I know of about another $9-10,000 that is not yet in the Jimmy Fund Walk’s coffers. I expect to raise another $3-7000 personally between now and then between a miniature golf tournament and my summer fundraising letter. And the next 45 days were huge a year ago for everyone, so I think we can get there.
…45 days to go…
But we can’t without your help.
Landers tournament boost
A good chunk of the money we are waiting on is from the very successful Hank Landers Memorial Golf Tournament Jenaleigh Landers and her family organized on August 1. I thoroughly embarrassed myself with my lack of golf ability—but also thoroughly enjoyed the day. Jenaleigh is still paying off the bills, but the basic estimate is well above last year, which was our biggest single day fundraiser of the year for 2014.
…I think we can get there.
Jenaleigh’s event is north of Boston. I’d love to see us get additional tournaments west and south of the city next year. Let me know if you have an interest in doing one.
I’ll be doing a booth at a craft fair in Somerset, MA August 22. If you are a crafter and would like me to sell some of your work as a fundraiser for your Walk, let me know and I’ll come get it. I’m trying to set up to be at another craft fair over Labor Day weekend.
Speaking of speaking
If you are doing a fundraiser of any kind for the Walk, let me know. If you have a group you’d like me to talk to, let me know. If you’d like to try to get either Jen or Matt to a fundraising event you are doing, let me know. Getting the word out about NET cancer is as important as raising money.
I’ll be doing a booth at a craft fair…
You’ll notice I am already thinking in terms of what we can do a year from now. It’s increasingly clear I need to turn into a year-round fundraiser. Research is expensive.
The work we do
But more important is saving lives: giving patients better, longer lives with their spouses, children and grandchildren. Jane wasn’t here for our 25th wedding anniversary last year. Our 26th is September 2. I know how horrible that day will be for me. I know how horrible it was to watch her die.
Research is expensive.
We’re fighting so that others can have those anniversaries, birthdays and other milestones Jane and I will never have. My eyes are firmly on that prize. We need yours to be as well.
Pax et lux,
Harry
Help us smack down NET cancer. It’s mid-August and Walk Day is just 45 days away.
Carcinoid syndrome sucks. I know. I watched Jane wrestle with it for years: the flushing, the mood swings, the insomnia, the diarrhea. I watched her inject herself in the belly with octreotide every morning, waited with her for the monthly sandostatin injection to thaw out at the Dana-Farber Cancer Institute.
…patients will still have to face at least a monthly needle.
None of the palliative drugs worked very well for her. Part of that was her cancer was so advanced when it was diagnosed that it simply overwhelmed all efforts to ease her symptoms. Any relief she got didn’t last long. Part of it may also have been the standard treatment doesn’t help everyone.
A new hope–at least for symptoms
But there is new hope on the horizon. The recently finished Phase 3 trial of telotristat etiprate showed the drug has a positive impact for “patients with carcinoid syndrome that is not adequately controlled by the current standard of care” according to a release last week from the drug’s developer, .
None of the palliative drugs worked very well for her.
The TELESTAR Phase 3 trial of the oral treatment was directed by Dr. Matt Kulke’s group at DFCI. If and when the FDA approves telotristat etiprate, it will be the first new treatment for NET cancer patients suffering from carcinoid syndrome in 16 years.
Quick action possible
According to Kulke, that approval could come within a year of the drug’s officially being submitted to the FDA. Because NET cancer is considered an orphan disease, new drugs for it get expedited treatment at the FDA.
…there is new hope on the horizon.
The study added telotristat etiprate to the current standard of care for a group of carcinoid syndrome patients who were not getting much relief from that standard. With both 250 mg and 500 mg doses, the patients “experienced a statistically significant reduction…in the average daily number of bowel movements over the 12 week study period” compared to those on a placebo, according to the .
Professional reactions
Kulke, who directs the Program in Neuroendocrine and Carcinoid Tumors at DFCI, called the TELESTAR results “promising, and the community of patients and caregivers who live and deal with carcinoid syndrome are excited about the prospect of a new treatment becoming available.”
“…a statistically significant reduction…”
Lexicon president and CEO Lonnel Coats was “extremely pleased” with the results of the trial. “We are committed to working closely with the FDA to file our…new drug application and to bring this innovative new treatment to patients whose lives are already impacted by the challenges of cancer.”
By the numbers
The release does not go into many details about the results of the trial, however. Those will be released at a conference in Vienna in late September. But it does offer a few glimpses from which patients and caregivers can glean some idea of the drug’s potential impact.
“We are committed to working closely with the FDA…”
The study defined a durable response as “at least a 30 percent reduction in daily bowel movements over at least half the days of the study period. Forty-four percent of the patients on the 250 mg dose achieved that level of relief. Forty-two percent experienced that on the 500 mg dose. Those numbers compare to 20 percent of patients on the placebo.
Side effects
Patients in all three arms of the trial had similar numbers of and types of “adverse events.” The “tolerability profile” with the placebo and the 250 mg dose were similar–and both were somewhat better than the higher dose when it came to mood and gastrointestinal discomfort.
…a 30 percent reduction in daily bowel movements…
The company promises to do “further in-depth analysis of safety and tolerability data.” Patients in the 12 week study are all now on an open label extension for 36 weeks, receiving 500 mg of telotristat etiprate three times a day.
How it works
Telotristat etiprate works by targeting tryptophan hydroxylase (TPH). TPH is an enzyme “that triggers…excess serotonin production within mNET cells.” The excess serotonin is what causes carcinoid syndrome.
…similar numbers of and types of “adverse events.”
It is different from somatostatin analogs, which work to reduce the release of serotonin outside the cells, because it works to inhibit the creation of excess serotonin to begin with. In a nutshell, control the TPH and you control the production of the serotonin that is causing the problem.
What the study doesn’t tell us
But before we get ready to throw away the syringes, we need to be aware the study didn’t try telotristat etiprate on its own. Patients continued with their somatostatin analogs throughout the study. There is no evidence here to suggest how the new drug would do on its own.
…works by targeting tryptophan hydroxylase…
It is possible the combination of the two methods is what caused the results–and it is equally possible only the telotristat etiprate was involved. We won’t know that until–and unless–someone studies telotristat etiprate as a stand-alone treatment.
The monthly needle remains
We also know that octreotide and lanreotide do slow tumor growth–something we don’t know about the new drug. For the foreseeable future, carcinoid patients will still have to face at least a monthly needle.
We won’t know that…
And nothing we have yet offers patients a cure. We can ease the symptoms. We can slow the progress of the disease. We can buy more time together–and more time to find a cure. This seems likely to help accomplish each of those ends.
I gave Matt Kulke a Walking with Jane Walking Stick on the day the results of the TELESTAR study were released. Telotristat etiprate seems likely to help many NET cancer patients with carcinoid syndrome have a better quality of life.
“I am too young to be a widower and too old to be a bachelor,” I said to myself on one of those dark days when Jane was in the hospital in one of the three comas that would eventually claim her life. It is the kind of thing I said to myself to convince myself she would not die–that we would find our way through this crisis and she would come home.
…no death changes that.
In the end, I slipped on the mantle of “widower” easily enough when she died. It is the cloak I have worn every day of the 56 months since that night. It is a comfortable and comforting identity for a man who has lost everything he cared about–and who is surrounded by the meaningless reminders of what was.
Common ground
I cannot say that nothing good has come of my taking up that role. My father, who lost my mother less than a year before Jane died, and I found in our shared widowerhood a bridge across all the animosity between us. It gave us a shared experience we could talk about– a shared pain none of my siblings could comprehend. We made a peace that let us set aside our adversarial past.
I am too young to be a widower…
He died a year ago this week. A part of me was happy for him. My mother was his lodestone. When she died, he was ready to die. In some ways, he spent the last three years of his life waiting to die. His ashes and hers are mixed in my sister’s garden.
A father’s life
He was 85 years old. He had lived a good, interesting and productive life. He had six children, all of whom were still living when he died. And his work in engineering will likely survive even his great-grandchildren. But he was interested in the world until the day he left it.
My mother was his lodestone.
He was a widower, but the word did not entirely define him. He was ready to die, but he didn’t want to. He was too curious about what was over the next hill. If someone had offered him a good quality of life for another 50 years, I think he would have taken it. But his body was failing him–and he knew it.
Taking off the cloak
For the last six weeks I’ve been teaching a journalism course in Boston. It was good for me. It forced me to think about something other than cancer and loss for a few hours every day. It reminded me that I am too young to be a traditional widower. I am not old enough to spend what remains of my life waiting for death.
…the word did not entirely define him.
I am, in that regard, my father’s son–and likely would be even if I were much older. I want to see what is over the next hill. I want to see the death of cancer. I want to see the things Jane never got to see, that my mother never got to see, that my father never got to see.
But I have become too comfortable with the cloak of widowerhood. I need to be something more–need people to see me as something more. Jane is gone–and I am still broken in so many ways. But Jane would not be happy–actually, she’d be damned angry–if I let the word “widower” define however many years I have left in my life.
A stalled journey
I wrote earlier about the topiary heart Jane made early in our marriage–and how it was the one houseplant that died during her illness. I talked about having found another piece of ivy growing in another pot and how I had trained it onto Jane’s original mold.
I am, in that regard, my father’s son…
The original strand has stalled in its journey maybe three inches short of a full circuit. But new shoots have emerged from the surface and are moving up the base. Perhaps they will fill the space that remains. Perhaps then, my soul will heal.
Too young to be a widower
This much I know: I am 63 years old. I am still too young to be a widower. I am still too old to be a bachelor in any traditional sense. I am caught between two things I really have no interest in being–because I am more than either of those things–or at least I think I am.
The original strand has stalled…
We all have many roles we play in life–and it is easy to define ourselves by any one of them. But when a single role ensnares us–when we let that single role determine not only how we see ourselves but how we allow the world to see us–we stop growing and begin to embrace our own deaths.
More than a widower
At the end of Arthur Miller’s play The Crucible, John Proctor asks, “What is John Proctor?” He is a complicated man facing the immediacy of his own death. And the answer to that question will determine what his life means–whether he will go to the gallows and die or live a lie.
We all have many roles we play in life…
Yes, I am a widower. But I am more than that–even though I have forgotten that fact more often than not in recent years. I am a writer, a teacher, a warrior, and a peacemaker. I cook, I garden, I build. I go for long walks and long drives. And I love. I am a human being–and no death changes that.
Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.
Here we are, entering the last week of July. The Marathon Walk is two months from tomorrow and my personal training is going well, but slowly. I’m trying to make sure I don’t make the mistake I made last year of training too hard too early. My right knee, which I injured last year, feels stronger every day. I’m climbing lots of stairs each day and it seems to like that.
Patients are counting on us.
As of today, we have 16 Walkers officially signed up and have raised $15,791. That’s good for seventh place among all Walk teams, but about $6000 behind sixth place.
Register now
We have a lot to do in the coming weeks if we are going to reach our goals of 80 Walkers and $80,000. If you are planning tho Walk with us but have not yet signed up, please do so today here. Remember, even if you can’t be physically here on September 27, you can be a virtual walker.
… we have 16 Walkers officially signed up…
The Hank Landers Memorial Golf Tournament next Saturday will certainly help our fundraising numbers. Jenaleigh Landers raised a bundle with that event last year and it sounds like it will be as successful this year. I’ll be there to demonstrate conclusively that I am among the worst golfers in the known universe. Registration for that event has closed, but we have two other major efforts coming up in August.
Walking with Jane will host the First Annual Walking with Jane Miniature Golf Tournament at the Caddy Shack in North Dartmouth, MA on August 27 from 4 p.m. to 9:30 p.m. All proceeds raised will go to NETwalkers Alliance. We will split that money up among team members who work on that event. Entry fees are $10 for adults and $6 for children under 12. You can register at here or by sending a check to Walking with Jane at P.O. Box 9721, Fall River, MA 02720 for the amount necessary to cover the fees for those in your group.
Bits and pieces
I’ll be working on finding sponsors for both the miniature golf tournament and our Walk t-shirts over the next few weeks, as well as drafting my summer fundraising letter.
I am a real neophyte when it comes to smart phones. For those of you who are not, the Walk has a fundraising App you may find useful. You can learn about it and download it here.
You can view and share the Walk Heroes online, including our own Jillian Emmons. You can also use this to help with your online fundraising letters and notes. And if you have fundraisers you’d like me to highlight–or need help with an issue, feel free to contact me with a comment here or a note to walkingwithjane@gmail.com.
Final thoughts
Each of us has a reason to want NET cancer dead. Together, we are helping create a powerful research team at DFCI with the resources to do that job. But we need all the help we can get to make that happen.
…help with your online fundraising letters and notes.
Please join us if you can–and donate if you can’t. Please recruit others to the cause. Patients are counting on us.
If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what’s your excuse for not joining us?
Two friends celebrated their fiftieth anniversary this weekend. Several of us went to mass with them, then spent the afternoon at a local restaurant eating and laughing together. I smiled, hugged them both, and felt some happiness for them. No one mentioned Friday was 55 months since Jane died. I don’t think anyone remembered. Nor did I expect them to. It would have soured everything.
I don’t fear death.
It’s amazing how good I have become at hiding pain when I need to. My friends were surrounded by an aura of joy and I knew I must do nothing to damage that moment. They are not young and I worry about their health. I want them to suck up and enjoy every minute of couple-hood they can get.
Pain-filled realities
I try to be good at anniversaries, birthdays and the other celebrations in people’s lives. I know too well what it is to face Christmas, Valentine’s Day, and Halloween alone. I understand too well what it is to have no one to share the hummingbird’s return with or the small joys of a freshly finished landscaping project. I know what it is to face every day alone.
It would have soured everything.
There is an underlying tragedy awaiting every pair of soul mates. Sooner or later, one half of that partnership dies. And it is painful on both sides. I remember Jane’s tears when I told her there was nothing left to do–nothing left to try. I know what every day is like for me. I begin and end every day alone and empty.
Celebrating the big and the small
Last September we would have celebrated our twenty-fifth anniversary. The day passed unremarked by anyone other than me. Last November, Jane would have turned 60. I took a card and some flowers to her grave. If anyone else remembered, they didn’t tell me.
I try to be good at anniversaries…
And I don’t expect people to remember those dates any more than I expect them to remember the anniversaries of her death. They are the kinds of things that couples take joy and sorrow in. The rest of the world has its own joys and sorrows. While both halves of a couple are still alive they need–and deserve–to enjoy the days they have, no matter how big and no matter how small.
The nature of couples
Jane and I did that. We sucked the marrow out of every bone the gods tossed our way. We shared not just a bed and a house, but a life as well. I have days I wish I had not loved her so deeply. I have days, still, where I cry myself to sleep, days where I hold the pillow she slept on to my nose, hoping to pick up even the slightest hint of her presence.
Last November, Jane would have turned 60.
My friend talked Sunday about his wife being his right arm. I understood what he was trying to say–but the truth always seems like hyperbole. His wife, like Jane to me, is more than a right arm. She is half of all he is–just as he is half of all she is.
A touch of envy
I won’t pretend I am not both bitter and envious. I very much want the things they have–the years they have enjoyed together since Jane and I celebrated their twenty-fifth anniversary with them less than a year after we were married. I desperately wanted–and needed–Jane with me there on Sunday as a warm, physical presence.
Last November, Jane would have turned 60.
Jane always said we would not reach our silver anniversary unless we counted in dog years. My response was always that we would–that we wouldn’t be that old–62 and 59. Fifty years might be a stretch, but given our genetics, even that seemed possible.
Fighting Death
Loss hurts. Death does not kill just the person we bury. It kills the couple, as well. I am not the same person I was when Jane was still alive. I am, in some ways, a colder and more bitter man. In others, I am kinder and more compassionate.
I very much want the things they have…
I have seen Death in my beloved’s eyes, been so close that I could feel the rustle of his robes, smell the pleasant stench of his presence, and hear the whisper of his scythe. I know what it is to try to stop Death–and I know what it feels like to fail.
Moving forward, alone
I don’t fear death. It is a long time since I did. But I am not anxious for it either. People talk about seeing their loved ones again and how happy they will be when that happens. The possibility holds no fascination for me. Jane and I were about making this world better. I still am. That work is not finished. It would profane all that we were if I abandoned that task.
I have seen Death in my beloved’s eyes…
So I keep trying to move forward. I get up every morning. I make the bed. I shower. I shave. I have breakfast. I do whatever work is before me every day. And I celebrate the milestones in other people’s lives, hoping the memories we create on those days will help sustain them in the days when half of who they are is no longer present.
One reason I work on NET cancer issues is that I don’t want anyone else to face a life alone without their other half.
