Awareness: cost of being human in a world of cancer
My normal post rate is three times a week. That schedule has not happened for more than a year. When one of your best friends is dying, that happens. When you are recovering from surgery, that happens. When both happen at the same time, everything goes sideways. Awareness takes a back seat to those other needs.
If there are specific things you’d like to know about…
As I wrote in my last post, that’s pretty much the story off my life for the last 18 months. One of my closest friends learned in April of 2016 he had glioblastoma. He died July 1 of this year. In June, I learned I needed Mohs surgery for skin cancer on my face. I had that surgery in early August and it proved more extensive than any of us expected.
Recovery from loss, recovery from surgery
I am still recovering from that surgery, still recovering from the loss of my friend, still trying to make sense out of too many things, and still trying to aid the fight against NET cancer wherever and whenever I can. I’ve done craft fairs every weekend for the last month, helped organize a presentation the first night of Dana-Farber’s Visiting Committee meetings, and worked on a dinner that raised over $5000 for NET cancer research.
…everything goes sideways.
But neither my mind nor my body has fully recovered from the blows of the last several months. Losing my friend John brought back memories of Jane’s last days so starkly and brutally I’ve had to seek professional help. Recovering from the surgery requires nine–and sometimes 10–hours of sleep every night–sleep haunted by dreams of things that might have been.
The cruelest months
November and December are the two most difficult months of my year. Last night, Halloween, was one of our two favorite holidays. November 17 is Jane’s birthday. November 15 was the date of her heart surgery, November 13 the night we last shared a bed. November 14 I had to help her off the toilet for the first time. The night of November 17 Jane had her first carcinoid crisis–the day she was supposed to go to the step-down unit. She had two more of those–both of which put her in a coma–before the end of the month.
I am still recovering…
December started with bright hopes that disintegrated the morning of December 9. The next night, at 7:59, Jane died. Her wake was December 16, her funeral two days later. Truth be told, I haven’t been right since–I just cope with the tears better–put on a better face to the world. I’ve done grief groups and had some one-on-one therapy, to little real effect.
Awareness: This is Hell
People ask why, seven years later, I am still active in the fight against NET cancer, why I still visit with patients, follow the research, chair committees, raise money and bike and run and walk and do all the things I can think of to support research and raise awareness. The answer is simple: I know what loss feels like. It is a thing I would not wish on the darkest of the dark. It is Hell–and I am never out of it.
…I haven’t been right since…
Officially, NET Cancer Awareness Day is November 10. For me–and for the Commonwealth of Massachusetts, thanks to the efforts of a now deceased NET cancer friend–the entire month of November is NET Cancer Awareness Month. There is too much to say in a single post–too much people need to know about this disease, to know about the strides being made, to know about the resources that are out there, to know about what may lie ahead.
Awareness: A month of daily posts
So from now to the end of November, my plan is to create a new post every day. Tomorrow, we’ll start with a little history of the last seven years and how much has changed in that time. In the days ahead, we’ll look at resources for patients, caregivers, and for those in grief; we’ll look at what the latest research says about treatments in the pipeline, trials that are going on now–and trials coming in the future.
It is Hell–and I am never out of it.
If there are specific things you’d like to know about, you can respond here or drop me a line at walkingwithjane@gmail.com. I’ll try to honor any requests that come in as quickly as I can. But remember, I’m not a doctor and can’t give anything that looks like medical advice. For that, you need to talk to your doctor–a person who needs to be a NET specialist if you are going to get the best advice you can get. We’ll talk about that in the coming days as well.
The extent of the surgery is best seen in this photograph. It took over 100 stitches to close the wound. My mind was largely absent for the month following. Awareness of anything other than self is difficult under those circumstances.
I lost track of the date over the weekend. It happens when you really don’t have a good reason to remember. But I don’t really need a calendar to find the tenth of any month. All I have to do is look at my behavior and how I’m feeling. My subconscious knows the monthly anniversary of Jane’s death even when my conscious mind doesn’t.
…the sounds of an empty house when half its soul is gone.
It really starts the night before. I avoid going to bed. When I get there, I don’t sleep. I know what Ebenezer Scrooge dreamed that night, but my ghosts visit me the tenth of every month. They are relentless. Someone asked me last month to write a piece about dealing with the failures and regrets after you lose your spouse. I want to answer that question as a last part of my series on being a caregiver. But I don’t have an answer.
Remember to forgive
Jane forgave me before she died. I know that because she said it. But I have yet to figure out how to forgive myself. Intellectually, I know I did all I could have done. I made the best decisions I could, given what we knew at the time. But emotional forgiveness is a very different story.
I avoid going to bed.
And I also know that even if I find a way to get my emotional side to accept and forgive, I will never be entirely whole. I wrestle with that part of the loss as well–and never more than on the ninth and tenth of the month.
I remember confusion
The good news is that I cope pretty well the rest of the month. I cook, I clean, I buy groceries and pay the bills. I go out to listen to music or see a play. I laugh. At times, I can even pretend for a few hours that everything is normal.
…I did all I could have done.
Last night, I buried myself in a book for six hours. I went to bed about 3 a.m. I woke up late, not knowing what day it was. I went to the kitchen and made six separate trips to the refrigerator to gather the ingredients for breakfast, interspersed with doing dishes, opening the drapes, and moving randomly from room-to-room to no earthly purpose. I dropped things. I couldn’t get my mind to focus and soon was berating myself for being stupid.
I remember why
Then it came to me: today marks 73 months since Jane’s death. It is the day my mind does not function, the day my body doesn’t work, the day I will say hurtful and destructive things to people without a second thought–and not know I’ve done it if they don’t call me on it. I am always a sick human being, but never more so than on the tenth of the month. I should–and usually do–withdraw from the world that day.
I couldn’t get my mind to focus…
And so I did today. My only human interaction was with the folks at the flower shop where I bought the monthly bouquet for Jane’s grave. The cemetery was empty when I got there–and stayed that way. I put the flowers in the cemetery vase, then stood in the snow and the wind and talked to my dead wife for 20 minutes.
Cold memory
The clouds scudded across the sky. There is a storm coming in tonight that will melt all the snow. But I always find her grave a cold place. It felt that way before she died, as well. I can dress that stone any way I like, but the flowers do little to blunt the pain.
The cemetery was empty…
I count my other losses while I am there. My mother-in-law, dead of pulmonary fibrosis, is buried there with her husband, whose body simply shut down over the course of a weekend. My mother, who died of Alzheimer’s, and my father, who died of a stroke, have no grave. Their ashes are scattered together in my sister’s garden in Seattle, feeding a tree that plays host to hummingbirds throughout the year.
Remember the others
I think of all the NET cancer patients we have lost since Jane’s death, knowing that barring a major breakthrough, we will lose more in the years ahead. I wonder if I have done all I can to change that future, knowing even if I have, it is not nearly enough. And I think of all the people I have lost to other forms of cancer and other diseases–lives cut short by things I could not cure or prevent.
The clouds scudded across the sky.
Today, I got a note from a man who lost his wife to NET cancer on Christmas Eve. She died in his arms, as Jane died in mine. I gave him what little comfort I could, knowing there is nothing I can do or say that will make any of what he faces feel any better. You think there is nothing worse than that feeling of absolute helplessness when you hold someone in your arms knowing there is nothing you can do beyond what you are doing–and that it does not seem like enough.
The days that hurt
But it’s not the day they die that really grinds on your soul. Nor is it the day you bury them. You have things to do those days–and people to hold your hand. It’s all the days that come after–all the days you wake up alone, live alone, and go to bed alone. If you’re lucky, as I have been, you find meaningful work to do. If you are really lucky, as I have not been, someone comes into your life to share that burden with. But you never forget–and it never really stops hurting.
She died in his arms…
You learn to cope. You learn to show the face to the world it wants to see. And you talk with the others who have made–and are making–the same journey. You share a secret those who have not lost never really come to understand. And you move forward, as best you can, through a world that has no idea–and no vocabulary that will let them understand until they experience it themselves. And it is, if you have a heart, something you would never wish on anyone.
Remember the now
The rain has begun. The droplets run down the window across from me. I can hear the clock ticking over my shoulder, the rumble of the furnace in the basement and the sound of my own breathing when my fingers pause on the keys. My stomach grumbles.
You learn to cope.
These are the sounds of an empty house when half its soul is gone. It has been the background noise of my life for 73 months. It is why I fight so hard to end the things that have cost me so much–and why I keep fighting six years after I lost everything that mattered.
I remember Jane’s love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.
(Editor’s Note: This is the first of a series of posts on practical advice for caregivers. It specifically applies to spouses dealing with NET cancer, but should be broadly applicable to anyone facing a longterm illness or injury. Keep in mind, however, that I am not a doctor, psychologist, or therapist of any kind. I’m talking here from my personal experience, nothing more. Don’t take this as gospel as your situation and what you experience may prove very different. I make no guaranties about the soundness of what I say here in your circumstances.)
Some background
I come from a long line of caregivers. My grandmother often was not home when we came to visit. If an elderly neighbor needed longterm help, she took on the task, often moving in with them for weeks at a time. I never got to watch her with those people–I just knew that she did. But I often turn to that memory when I need advice.
People don’t know what we need…
And I am the oldest of six children. I’ve changed the diapers on all but two of them and taken responsibility for the actions of all of them at one time or another. So when Jane got sick, I thought I knew what to do. All of that helped, but it wasn’t enough.
Theory vs. practice
People have written books on caregiving. But frequently, those books focus on caring for aging parents, not a loved one as close as a spouse or a child. In addition, the writers sometimes work from theory rather than experience. They do the best they can with the knowledge they have, but sometimes the advice is too abstract to be useful.
…I thought I knew what to do.
And people dealing with critical illnesses, like NET cancer, often don’t have time to read and digest an entire book. The immediate needs of the patient constantly come first–leaving little time for much else. My purpose in this short series of articles is to give practical advice from my personal experience with my wife’s NET cancer.
Advice for the beginning
“He says it’s probably cancer,” my wife said as she got out of the car that warming July morning. I’d wanted to go to her doctor’s appointment with her, but she’d firmly rejected that notion. I think she feared my reaction when she got the news. He’d told her alone, then sent one of his staff in who had dealt with cancer to talk with her and hold her hand.
…those books focus on caring for aging parents…
Letting her go to that appointment by herself has haunted me ever since. I tell myself I should have insisted. But I also know she didn’t want to have to think about me and my reaction when she got that piece of news. She wanted space to digest that news by herself before dealing with anyone else–including me. But it was the last time I let her face a doctor alone.
Balancing act
Being a caregiver, for me, was a constant balancing act on multiple levels. Jane had times, especially at the beginning, when she needed time to process what she heard and experienced. She needed me to be quiet and let her think. Sometimes she needed to be alone to do that. She also needed times she could simply talk to me about things other than cancer. Sometimes she needed me to pretend nothing was wrong. And there were times she needed to be held. I tried to honor those needs, as well as the cancer.
‘He says it’s probably cancer.’
But reading Jane’s moods–even after 21 years of marriage–wasn’t always easy. The cancer made it even more difficult. Occasionally, she retreated into herself so completely that all facial expression and body language vanished. It bewildered me at times.
Seek professional advice on communicating
In talking with other caregivers since Jane’s death, I’ve come to realize all of this is pretty common. Not that that helps much. We rely on all kinds of cues when we communicate with those we love. We don’t react well when those cues suddenly vanish–and that creates tension in an already difficult situation.
It bewildered me…
Part of me thinks spouses facing a serious disease or injury should immediately be placed in counseling with a qualified therapist. Jane would never have agreed, even had I, or a doctor, suggested it. We were both very private and independent individuals. Bringing another person in would have invaded that in ways we both would have had trouble with.
Sharing facts and feelings
That doesn’t mean it wouldn’t have helped. In retrospect, had we looked for and found the right person, it might have made some things easier. Instead, we did what we so often did: relied on our mutual willingness to talk without boundaries between us. We were always good about talking about what really bothered us. Neither of us let the other hide behind false issues.
Jane would never have agreed…
I think the willingness to share feelings is a real key to being both a good caregiver and a good patient. If you can talk to each other without a third-party, fine. But very few people seem able–or eager–to do so. Key piece of advice #1: ask for help when you need it.
Best advice: ask for help
And you are going to need help. Lots of it. And that help will become increasingly more difficult to come by as the weeks turn to months and the months–particularly with NET cancer or any longterm illness–turn to years. People will be there in droves at the beginning. They will thin as time passes. At the end, only your real friends will still stand with you. Some of those still there may surprise you–as well as who is not.
…ask for help when you need it.
Regardless, people won’t know what you need until you ask. Jane had a real battle in the hospital the night before Thanksgiving. She’d come out of a coma the day before and lost her mind for a while. She was so bad, the doctors sent me to another place in the hospital for the night while they worked on her crashing blood pressure and hypoxia. I have no idea what happened that night. They never told me.
You don’t know until you ask
But when I came through the door the next morning, there was love in her eyes–and a determination to live for as long as she could. She was afraid, though. There is a tradition in her family you wake up for a short time before you die to say your final good-byes. She wanted to see her father and sister. They couldn’t drive to Boston. It was Thanksgiving Day.
…you are going to need help.
I called a friend who said he’d skip dinner with his family to bring them up. Another friend cancelled her dinner plans to come with them. I’d been uncomfortable asking. But they didn’t hesitate. They’d been waiting for that kind of call–but they needed me to say what we needed first.
What we think we know vs. reality
People don’t know what we need unless we tell them. That was one of the hardest things for me to understand. If we are married long enough, we often know what the other needs without asking. We get in the habit of thinking people know what we need. The truth is, we don’t always know, under these circumstances, even what our other half really needs at any given moment. And neither do they.
I’d been uncomfortable asking.
Your friends will have even less clue how to help. You have to swallow your pride and ask. More often than not, they will surprise you in a positive way. But not always. Then you ask someone else. You don’t have time or energy for anything else.
Advice: Caregiving is not about doing something for someone else, it’s about walking the path they are on with them.
We focus most of our energy–and rightly so–on the needs of patients. Their lives are at risk and we need to find ways to help them. We need treatments to ease their symptoms, slow the course of the disease and, ultimately, cure it. Many of us, when we hear the word caregivers, think of doctors and nurses and technicians–at least I always did until Jane got sick.
They are fighting for their lives.
But the bulk of the day-to-day care of someone with a chronic or lingering or debilitating illness falls on ordinary people. Lay caregivers get no specialized training. You simply wake up one morning and discover your entire world has changed. Suddenly, you need to learn the details of a disease you may have heard of but know nothing about. Sometimes, you draw a disease like NET cancer about which no one seems to know anything. You have to juggle a job while taking on all the chores a significant other either did or helped with–as well as your own.
The emotional and physical toll
In an instant, you become both the emotional and physical support of someone you care deeply about. Their pain becomes your pain. You bottle up your own pain and negative emotions because the last thing the person who is sick needs is to see what their illness is doing to those around them.
Lay caregivers get no specialized training.
People tell you to take care of yourself so you can keep helping the patient, but no one really tells you how to do that in a practical sense. And even when you figure out how, you feel guilty because the person you are caring for never gets a second off from their disease. And sometimes you watch as every day the person you care for gets weaker and weaker–until you have to dress them and change their soiled underclothes and bathe them. It’s not that you mind the work, it’s how awful it is to watch someone you care for become an infant.
Personal impact
From the day of Jane’s diagnosis to the day of her death, I lost more than 20 pounds. Emotionally, I was–and still am–a mess. When I was with her, I was generally patient and gentle and kind. There were times, though, I failed. I carry the guilt of those times with me, even now, nearly six years after she died.
People tell you to take care of yourself…
When we were apart and I didn’t have to be perfect, I could fly off the handle at the slightest miscue. I was walking across the lawn one afternoon. I was buttoning up the outside of the house for the winter. My foot went into a hole. Every ounce of repressed anger came out in that instant. I couldn’t yell at Jane, couldn’t yell at her cancer–but I could pound my fist into the ground over and over again.
Outcomes
And if you get lucky, the person you love survives. They regain their strength and become someone similar to who they were before. They are not the same person–you don’t look death in the eye and return unchanged. But love abides because of what you’ve both been through. Neither of you is unchanged–and it makes you both stronger.
…I lost more than 20 pounds.
And if you are not lucky, you pick out a coffin and plan a funeral service. You choose a burial plot and a headstone. You put on a brave face and thank people for coming to the wake or the funeral service or the burial. And you cry yourself to sleep at night until you find a way to deal with the empty chair at the table that represents the void in your life.
Tears on the road to Boston
I’m still crying. The tears sneak up on me at the strangest moments. I drove to Boston late yesterday afternoon. I pulled into a rest area to check a phone call. I’ve stopped there before without incident–but suddenly I’m crying, remembering our last trip to Boston together the day before Jane’s surgery. We’d stopped there because Jane needed to go to the bathroom.
You put on a brave face…
I’ve done grief groups, had counseling, and I still get ambushed by grief like that. Nearly everyone I know has largely moved on from Jane’s death. For me, the numbness has just begun to wear off–and the real hurting has just begun. The pain is a good thing, though. It means the wound has healed enough to hurt.
The unanswered need
We have support groups for patients. We have support groups for grief. Caregivers lurk in both. Too often, they have nowhere else to turn for the solace and support they need. But a caregiver cannot really talk about what they experience in either place. We’re determined not to let patients know what we are feeling in our darker moments. They are fighting for their lives. And grief groups aren’t quite the right forum for that either. They are about the pain of loss, not the pain of having failed.
I’m still crying.
Support groups for caregivers do exist, but they are too few and too far between–and often focussed on a particular disease. NET cancer caregivers need such a group, but we are so scattered that getting together–other than online–is difficult. But we really do need such a group where we can let out hair down without inflicting our pain on the patients who are our loved ones.
On the surface, caregivers may appear serene when taking care of a loved one. That serenity comes at a price.
Jane would be 62 today. She would have awakened to a birthday card, presents and breakfast in bed. That breakfast would have included tea and chocolate croissants. Later, flowers would have arrived and we would go to lunch at a favorite restaurant.
Happy Birthday, darling.
Instead, I’ll visit her grave. I will leave flowers, a card, and three small stones–one for her, one for me, and one for us. My life has a gaping hole in it I think sometimes no one sees but me. I work on NET cancer, I comfort the afflicted and afflict the powerful. I live the best life I can. But there is too little joy in it.
The birthday present I wish I had for her
What I really want to give Jane for her birthday next year is a cure for NET cancer. I want us both to smile at that reality. It hasn’t happened this year–but we’ve made some progress that gives me some small hope. Our understanding of the disease gets better every year, though it seems we will need to find some new approaches if what we are seeing be true.
Instead, I’ll visit her grave.
The money we have for research continues to grow with each passing year. The year Jane died, we spent less than $2 million on the basic research that creates cures. This year we have $15 million to spend in the US. A year ago, we were preparing the launch of 3-in-3: The Campaign to Cure NET Cancer at the Dana-Farber Cancer Institute. Between now and early December, we should reach our first $1 million in our effort to boost funding for the Program in Neuroendocrine and Carcinoid Tumors at that institution.
Birthday presents in my heart
On November 1, thanks to that effort, Dana-Farber created a new lab for gastrointestinal cancer that will have NET cancer as its primary focus. Our Boston Marathon Jimmy Fund Walk teams raised over $156,000 as part of that campaign. Riders in the PMC Challenge raised nearly another $50,000. And next year, we will do better.
This year we have $15 million to spend in the US.
Private donors outside those two groups will have contributed another $800,000 when all is said and done. Some of those donations are big; some are small. Every one of them counts because every dollar brings us closer to the understandings we must have. Patients deserve to live full and normal lives without NET cancer hanging over their heads.
The next birthday
At Dana-Farber, we need to build on that success. By Jane’s next birthday, I hope we’re talking about a $1.5 million addition–or more–to what we raised in this first year. I’d be thrilled if the three-year goal were reached in two. But it won’t happen without help from lots of other people who are not yet involved.
…a new lab for gastrointestinal cancer…
And we need to replicate the success of 3-in-3 at other NET cancer centers, both in the US and abroad. We need to turn that $15 million we raised for NET cancer research nationally this year to $30 million next year. To do that, we need every support group and small foundation to do whatever it can. For some of us, that will be as simple as writing a check. Support your local cancer center’s program or larger umbrella groups like the Carcinoid Cancer Foundation or NET Research Foundation.
Creating the NET future
For others, it may be organizing a NET cancer Walk or piggybacking onto a larger and more publicized event with a team or group of teams that earmarks their money to NET cancer research. Still others may run craft fairs or dinners or other events aimed at raising money for NET cancer and raising awareness about the disease in their community. And still others may find other ways, like selling candy bars or going door-to-door to share their story with their neighbors.
…we need to build on that success.
We need both patients and caregivers to understand the importance of taking part in trials–not only for their health, but for the health of others. Jane said, “I want to beat this–I want to be the first person to beat this. But if I can’t, I want doctors and researchers to learn everything they can from me about this disease and how it works.” There are times I wish she had let herself go earlier. But I know what we learned because she kept fighting was worth the extra pain she went through to get it. She was–and is–my hero because of that.
In our hands and in our hearts
What we do and how much money we raise as individuals matters less than doing all we can to take control of our own disease. After five years of working in this vineyard, I know how much–and how little–we can expect from the federal government and the major cancer charities. We have to realize that we are MS, we are ALS, we are Cystic Fibrosis–and take our future in our own hands whenever–and wherever–we can.
She was–and is–my hero…
The future of NET cancer research, the future of NET cancer treatment, the future of a NET cancer cure rests in our hands. If we don’t lobby for increased government spending, no one else will. If we don’t do the spade work to raise private money for research, no one else will. If we don’t volunteer for trials, no one else will. We are all walking with Jane–and none of us walk alone.
Happy Birthday, darling.
One of the things we might have done on Jane’s birthday is go watch the waves come in on the beach. But we need to build a different kind of wave to find a cure for NET cancer.
I was sitting just to the left of Jane’s hospital bed six years ago today. She’d arrived in the cardiac ICU just about midnight and they’d let me in to see her, briefly, about 1 a.m. I’d talked to her doctor about the surgery. He’d seemed pleased, despite the complications they’d encountered, with how things went. There’d been no sense of crisis.
…she kept paying it forward.
They’d warned me what I would see when I entered the room for the first time. Sometimes the pasty complexion and all the tubes and wires cause people to faint when they first encounter it. I spent half an hour there, just holding her hand and whispering sweet nothings. Then they sent me back to my hotel.
Jane wakes up
I slept a few hours but arrived at her bedside a little before eight the next morning. The nurse stood behind his panel of dials and meters, monitoring every vital sign, every drug going in and every fluid going out. I liked him. There was a calm about him I wanted to emulate. I saw that same calm in all her nurses over the next few weeks, even when things collapsed into chaos and crisis. That happened four times before death claimed her.
They’d warned me what I would see…
Now, I held her hand and talked to her. The nurse told me she was unlikely to wake up before noon, but her eyes flickered open within an hour of my arrival. They didn’t stay open long, maybe five minutes, and she dozed off again. But within an hour she was fully awake and alert.
We had a plan
She couldn’t talk with the tube going down her throat to aid her breathing. She couldn’t write with all the tubes and wires she was wrapped in. But we could hold hands and I could tell her what the surgeon had told me. It very much looked like she’d be in the step-down unit by Thursday night–as planned–and I’d be back home and out of the nurses’ and doctors’ way as she began to rehab her heart.
There was a calm about him…
It didn’t happen that way, but we had 30 hours that certainly looked like clear sailing into a difficult but workable future. Yes, her liver was a mess. Yes, her intestines were likely lined with tumors. But we had a plan–and the first part of that plan was going well. Tomorrow, we’d celebrate her birthday as best we could when she couldn’t eat, confident there would be more in the future when she could.
When right turns wrong
By the following day, everything was ready for the move upstairs except locating a bed for her on that ward. No problem: we started taking out the lines and doing the physical therapy as though the move had already happened. And Jane was a more than enthusiastic participant. She kept doing the simple exercises long after the PT people left. They’d told her she could–that it would speed up the process. And Jane wanted to be home by Christmas.
…we had a plan…
And then it all went sideways. At the shift change the new nurse ran the checks every new nurse makes when taking over a patient’s care. They’d taken off the pulse-oxygen monitor in preparing to move Jane to the step-down unit. The exam showed Jane’s blood oxygen levels crashing. They put her back on oxygen but the levels stayed lower than was good. They ran tests, did scans–but could not figure out what was going on.
Carcinoid crisis
I spent that night sitting with her in her room in the ICU. I didn’t sleep–and neither did she. She was in the midst of her first carcinoid crisis, though we didn’t realize it at the time. It was minor, compared to the ones that came later. Those would put her in a coma–and the last one would kill her.
…Jane wanted to be home by Christmas.
Jane never got to the step-down unit. I didn’t sleep at home again until December 10, several hours after her death. I curled up in a fetal ball in my corner of the bed and cried myself to sleep. Then I put on a brave face and went to work planning her funeral.
What we learned
We learned a lot from Jane’s struggles over those four weeks. Doctors rewrote the protocols for heart surgery aftercare on patients with carcinoid syndrome from what Jane went through. People are alive today who might not be because of that. I’m glad about that–a small brightness in an otherwise dark firmament.
Jane never got to the step-down unit.
Jane wanted good things to come from her fight with NET cancer. She wanted her doctors to learn all that they could from her. And she wanted future patients to benefit from her battle with the demon. Even dying, she kept paying it forward.
Walking with Jane was born out of my personal crisis after Jane’s death. She always wanted to keep paying things forward. I still do.
Serotonin is an important hormone for human beings. In the right quantities, it balances our moods, aids our digestion, regulates our blood pressure and respiration, and a bunch of other things as well. But if we have too little of it–or too much–the results are nasty.
…it has all filled me with a terrible resolve.
Some NET cancer tumors produce serotonin. Jane’s did. I’ve seen the impact of a steady overdose of that hormone from the outside. What it feels like to be on the inside of that situation is beyond my ability to imagine. But for lots of NET cancer patients, they don’t have to imagine it because they live it every day.
Why NET isn’t ‘the good cancer’
And they can live with it for decades. That fact lets some people–including too many doctors–think NET cancer is a good cancer to get. The patient looks healthy. And in a culture obsessed with weight, some of the women may even be envied for their ability to stay slim. Too many people count the years and forget about everything else.
…the results are nasty.
No one thinks about the quality of life in those decades except for patients and their families. They live with what the disease does to the quality of a person’s life in ways no doctor, no insurance or drug company rep., no average person does. They see the reality of the disease and what it does.
The beginning of Jane’s journey
Jane and her family dealt with her cancer for five years before I met her. They didn’t know that cancer was the cause of Jane’s sudden weight loss in 1980–they just knew she stopped eating. Her mother thought her daughter might be dealing with anorexia. But Jane only knew that every time she ate more than a few bites, her stomach filled up with painful gas that made her look three months pregnant.
The patient looks healthy.
Then the diarrhea would arrive and she’d feel better for a few days. She discovered if she stopped eating after 5 p.m., she had fewer problems. Slowly, she figured out that some foods were less of a problem than others. She adapted her behavior to minimize the impact of the disease–at least where eating was concerned.
Hidden symptoms
She stopped losing weight. Over time, she gained back a few of the pounds she had lost–though nowhere near what she had lost. People around her thought whatever she had had vanished. But it hadn’t. It was still there. She’d just learned to cope with the food part of it.
Then the diarrhea would arrive…
The insomnia was a different story. No one really saw it. When she couldn’t sleep, she got up and made her family fancy pastries for breakfast, graded papers, or prepped lessons. No one connected her sleeplessness and her digestion issues.
And then there was me
And then she met me. I didn’t make those connections either. At first, she kept her dietary issues from me–until I took her out for pizza after a movie one night. When I called the next day, she told me she wasn’t feeling well. The next time we went out, she told me she couldn’t eat after 5 p.m.–that it did bad things to her digestion. She was embarrassed by it and hadn’t wanted to spoil our date. She’d spoiled the rest of her weekend, instead.
The insomnia was a different story.
I come from a family that doesn’t need much sleep. I chalked her hours of sleep up to the same genetics we have that wakes us up after 6-7 hours of sleep. If I get much more than that, I stay groggy for the rest of the day.
Day-to-day realities
It was only after we were married I realized the extent of her insomnia, which gradually worsened over the course of our life together. I’d wake up at 2 a.m. to find her using her earbuds to listen to the tiny radio she kept on her nightstand. I functioned on 6-7 hours of sleep. She worked on 3-4–and sometimes on none at all.
…she kept her dietary issues from me…
Diarrhea was her constant companion. At first, it was a couple times a month. It would be proceeded by a couple of days of boating and gas. She’d trace it back to something she’d eaten or the pressure we both faced in the classroom. A doctor had told her teaching was stressful and the most likely cause of what ailed her. The first symptoms had come on just after she’d started teaching. It seemed logical.
Getting through the day
The number and frequency of diarrhea episodes increased gradually over time. She was embarrassed by them and, for a long time, would not admit even to me that they were happening. Her last year teaching, every morning started with diarrhea followed by an Imodium tablet that would get her through the day.
Diarrhea was her constant companion.
I tried to get her to the doctor, but her response was always the same: “They’ll just tell me it’s IBS, again; that it’s all in my head.” She thought the job was the problem and, in another 18 months we’d retire, and that would solve everything.
Mood shifts
Jane’s moods were also mercurial. We could be laughing and joking or snuggling in each other’s arms and, out of nowhere, she’d be so angry she couldn’t speak. It could be a compliment or a well-meant tease in response to a tease of her own. She would suddenly go cold and silent. By morning, she was herself again, as though nothing had happened.
…every morning started with diarrhea…
Those sudden shifts in mood became increasingly frequent over time. Often, I could ascribe them to the pain in her bloated belly. Sometimes, I knew I’d said something or done something that set her off. But sometimes, they came out of nowhere. Knowing what I know now about serotonin levels and moods, it was one more signal of the cancer that I could not see.
Another masking agent
Menopause came early for Jane. Her menstrual cycle, always irregular at best, went completely haywire in her late 30s. She had the hot flashes and night sweats we associate with menopause start up at about that point as well. Her libido died before she was 45. We still snuggled and kissed each other good night; still woke up in each other’s arms and held hands everywhere we went. We still loved each other deeply. But the sexual piece of our time together was over.
But sometimes, they came out of nowhere.
And, of course, we both ascribed a chunk of her moodiness to the emotional struggles many women go through during the “time.” It made perfect sense. But in the background, those tiny little tumors were churning out their deadly little drops, poisoning everything–or trying to.
Other things we might have connected
Jane had chronic low blood pressure. Her resting heart rate was sometimes under 50. We ascribed both of those things to her excellent physical condition. She never smoked, rarely drank and exercised vigorously virtually every day.
Menopause came early for Jane.
But sometimes she would get dizzy if she stood ups too quickly. Sometimes she fainted getting up off the toilet. She confessed later, there were times she felt like the world was coming to her from far away–as though she were having some kind of out of body experience.
Damage we couldn’t see
Serotonin is a caustic substance. In the amounts we’re supposed to have in our intestines, it doesn’t do more damage than our bodies can repair. But in the quantities NET cancer tumors can produce, they can slowly induce a fibrosis that makes the intestines increasingly brittle. In that state, they have greater and greater difficulty absorbing the nutrients the serotonin is pushing through them at faster and faster rates.
Jane had chronic low blood pressure.
All of this conspired to increase the rate at which Jane was starving to death. She needed bathrooms more and more often. It made travel of any kind more and more difficult. There came a point where just going out for groceries meant a pit stop in every store. And then, even that was too little.
Into the liver
At some point, long before the events of that last paragraph, Jane’s tumors hit her liver and exploded. The serotonin the body produces is supposed to be metabolized in the liver. This prevents it from reaching the heart in all its destructive power. But when the hormone is manufactured in the liver, all that serotonin shoots up through the valves in the right side of the heart, doing to them what has already begun to happen in the intestines.
…Jane was starving to death.
Jane was a physically very active woman. She played tennis every day in the summer–singles with her sister in the morning, often followed by doubles in the afternoon with three men, all of whom were good players. At school, we paced the halls at speeds that left even teenagers trying to keep up with us breathless.
Destroying the heart
As the valves in her heart deteriorated, stairs became increasingly difficult to navigate. Her feet would swell up with the fluid leaking back into her body from those leaking valves. Then her legs filled with that fluid. Then her belly. Without surgery, she would have died from congestive heart failure–essentially drowning in her own fluids as they squeezed her heart to the point of shutdown.
Jane was a physically very active woman.
She gave up tennis that last summer. We tried to go for walks and hikes, but they became shorter and shorter. Sometimes, she would send me on to finish what we started while she sat and read the newspaper or stared out across the water to the farther shore.
Every story is different
Not every NET cancer patient whose tumors are producing serotonin goes through everything that Jane did. Some go through more–or a different mix of events and symptoms. Nor does every NET cancer tumor produce serotonin. Some produce other hormones and peptides that create very different symptoms and experiences. Some appear to produce no hormones or peptides.
She gave up tennis that last summer.
It is a truism among the doctors who have become experts on this form of cancer that, “When you’ve seen one case of NET cancer, you’ve seen one case.” Every NET cancer is different, seemingly, from every other NET cancer.
The impact crater on my soul
I can’t say what any of this felt like to Jane. I can’t imagine what it was like for her to watch her world closing in on her every day until all that was left was what she could see from her hospital bed or the chair in the room she had to be hoisted in and out of with a crane.
Every NET cancer is different…
I only know the damage it has done to my own mind–my own soul. And I find I can’t describe that in any way that makes people understand the depth of either her suffering or my own in having had to watch her go through it. But it has all filled me with a terrible resolve: NET cancer dies.
Part of what gets me to walk 26.2 miles every September is my memory of watching Jane fight her way through the serotonin overdose her body was delivering her on a daily basis.
Jane and I forgave each other for the mistakes we had made over the previous 21 years, two months and 11 days on this date six years ago. We also forgave–or tried to–each other for the mistakes we knew we would make in the next few weeks as we prepared for her heart surgery, scheduled for November 15. We knew she would be in the hospital for at least three weeks. We both expected she would be home for Christmas. But we wanted nothing left unsaid, just in case. And we made each other promises.
…I have promises of my own to keep.
I brought her body home two weeks before Christmas and put it in the ground next to her mother–fulfilling one of those promises. Hard as this is for me to say–hard as this is for some of you to hear–my life has been empty ever since.
Promises to fill the void
I’ve tried to fill that emptiness by doing good in the world. I’ve worked on cancer funding–both generally and specifically for NET cancer. I’ve worked on NET cancer awareness by creating brochures, writing articles, making videos and talking to anyone who would listen–as well as those who didn’t want to. I’ve worked to raise money for research, helped patients try to find the resources they need to live better lives, tried to console and inspire others who have lost what I have lost.
Jane and I forgave each other…
Beyond that, I’ve written about the power of love, the power of forgiveness, and the need to embrace those things in our daily lives. I’ve tried to practice those beliefs every day in everything I do. Some days I’ve been better at it than others, but the desire is always there.
Broken promises
I envy those of you who find solace in prayer and simple faith. I equally envy those of you to whom those things have no meaning. Believers and unbelievers alike have certainties I do not share–and cannot share. I have seen too much to deny the existence of some higher power–or powers. But, equally, I have seen too much to believe in their benevolence–at least toward me and those I care about.
I’ve tried to fill that emptiness…
I have seen too much of death–too much of suffering. I’ve watched a man gouge grooves in the arms of a maple chair against the pain of end-stage lung cancer; watched a woman drown for three agonizing days as pulmonary fibrosis slowly choked her to death; watched my wife suffer for decades with the NET cancer that slowly destroyed her heart and shredded her bowels before it killed her. I have seen too much other hideousness to remain on speaking terms with divinity.
The empty sound of a shattered heart
Something snapped in me while I slept last night. I’ve felt it building in me for weeks–for months–for years, really. I’ve taken, as Peter, Paul and Mary sang, my “place on the Great Mandala, as it moves through your brief moment of time.” I have made my choices and live the outcomes of those choices every day–as well as the promises.
I have seen too much of death…
But I feel empty–empty in the way this house too often feels empty–even when it is full of people. I feel abandoned–the way I abandoned–and Jane abandoned– her cooling body after her death. And I’m tired–tired of the daily effort, the daily lifting and turning, and the slow, almost invisible progress that some days seems as much illusion as reality.
Dancing our promises
I danced with Jane to the end of her life. It was a dance filled with love. And since her death, I’ve tried to keep dancing that dance, even with my partner gone and the music fading like the sound of her voice at the end. We believed in love and forgiveness–and once you’ve heard that song, you can never dance to anything else–nor stop dancing.
Something snapped in me while I slept last night.
I made Jane promises before she died: I promised her a cure for NET cancer; I promised her I would not stop living; I promised her I would never stop working for the things we believed in. Those promises were not mistakes–but they are proving really hard–and often very painful–to keep.
Promise me this
Someone said to me this week that I am a person who goes where angels fear to tread. I said, “It’s easy to do when Heaven doesn’t want you and Hell is afraid of what you’ll do next.” I said it lightly, and the other person laughed. But it is how I feel–how I’ve felt for a long time.
I danced with Jane to the end of her life.
So don’t pray for me. Instead, love one another and forgive one another, even when you feel some people don’t deserve it. They’re probably struggling, just like you are, with something you can’t see. The hurt coming from their mouths and actions is evidence of that battle–a battle they sometimes can’t see or even acknowledge.
And I, I have promises of my own to keep .
For me, promises can have the power of a vow, depending on when and how they are made. The promises I made to Jane at the end of her life have that power.
The alarm woke me at 6 a.m. today. I had a craft fair to get to by 8 a.m. and I needed to shower, shave, eat and pack the car before I could leave. Fortunately, the site was only about 15 minutes away. I didn’t sleep well last night.
Jane and I were lucky.
I didn’t sleep well six years ago either. Jane and I came back from Dana-Farber late in the day. We’d had appointments with her oncologist and a nutritionist, as well as her regular labs and a Sandostatin injection. When we got home, for the first time, I had to carry her up the stairs.
Craft items
I got set at the craft fair pretty quickly. I’ve been at this long enough that I have a basic design for the table pretty well down. I’ve simplified some things, so I carry fewer boxes. I’ve started a new line this fall: I’m selling limited editions of photographs I’ve taken.
I didn’t sleep well six years ago…
I’ll add some zebra-themed hats, scarves and other items as soon as I get the time to get over to Rhode Island to pick them up from the group that is making them. I also have some nice hand-crafted earrings and knitting items.
Medical craft
But there was nothing routine about November 12, 2010. Jane and I slept in because I didn’t have to work. I had an in-service day at school, but my principal had strongly suggested she would not object if I spent the day with my wife instead. I hadn’t told her that was my plan in any event. Jane’s health was declining rapidly.
I got set at the craft fair pretty quickly.
We were sitting together in the living room when the phone rang. Her heart surgeon had talked with her oncologist and cardiologist. Apparently, he didn’t like what he heard. He wanted to schedule Jane’s surgery for Monday or Thursday.
Decision point
We wanted a few minutes to talk about that before deciding which day. We both felt sooner was better than later. She was worried about a cold she thought she was fighting off, but we both remembered me carrying her up the stairs the night before.
…he didn’t like what he heard.
We called back and told them Monday. They told us to arrive on Sunday afternoon.
Photographer’s craft
There are three kinds of photographer. The most common is the person simply trying to capture an event so they can remember it later. The second is concerned with sculpting an image made of captured light. The best photographers do both simultaneously. I’m not that good.
We wanted a few minutes…
On a good day, I’m capable of being the second, but I have to think about what I’m doing. I don’t do well with moving targets even then. If I get one good image out of every 200, I’ve done well. I have just six photographs I am pleased enough with to hang in my house or sell to others.
Our last trip together
I knew Jane was in pretty serious trouble the day before the operation when we drove to the hospital in Boston. I’d had to help her off the toilet that morning before we left the house. I had to go into the Women’s Room at a rest stop on the way up to help her again.
I’m not that good.
I helped her out of the car when we arrived and when I came back from putting the car in the parking garage, she was in a wheelchair, almost weeping. She apologized for me having to carry her bag and push her to the ward she would stay on that night. She just couldn’t walk that far.
The craft of craft fairs
It’s 10:15 a.m. and the craft fair isn’t going very well. I’ve talked with one person about NET cancer. Three or four more have drifted past. Mostly, it’s been crafters talking to crafters. There are three people here I know from other shows. We’ve checked in with each other and will talk as the day goes on. We’re all hoping things will pick up.
She just couldn’t walk that far.
Sometimes they do. Sometimes they don’t. You hope the people running the show know what they are doing—that they’ve done the advertising and the public relations stuff. Even if they have, you are at the mercy of the weather and who else has fairs where that weekend. Walking with Jane has run one in June for five years. Traffic is different every year.
The surgeon’s craft
Even an average heart surgeon needs to be better at their job than I am as a photographer or an event organizer. Jane’s surgeon was brilliant. Jane’s heart was so damaged he had to sculpt the muscle to craft a new seat for the valves he installed. Despite his skill, Jane would need a pacemaker to keep her heart beating for the time she had left.
Sometimes they do.
Jane’s surgery was supposed to take 3-4 hours. It took 12. I paced the waiting room. I walked up the hill to a church not far from a place I lived as a student. I tried to distract myself with television shows we liked to watch. I stared out the windows at the lights of the city. Nothing eased the waiting.
The craft of waiting
This morning, I deal with another kind of waiting. Nothing is at risk beyond my ego. And it’s not taking any serious damage. Someone asked, again, if my photographs are watercolors. I take that as a compliment. It’s part of what happens for me when I am seeing light and capturing it the way I want to. A few others have whispered, “Beautiful.”
Nothing eased the waiting.
Of course, there’s always the person who thinks the camera is more responsible for the quality of the picture than the photographer. There’s this much truth to that: the quality of the lens and the quality of the sensors do make it possible to more accurately capture the light we see. You can take a good picture if you have the skill with a point-and-shoot camera. I’m not sure you can take a great picture with one—though some of what I’m seeing from the latest phones is pretty impressive.
The surgeon’s tools
A surgeon has to have the right tools to do the fine work that heart or brain surgery requires. Hand them a Swiss Army Knife or an Exacto knife and they can certainly do more with it than the average person can. Serous work demands serious tools. But it also requires more knowledge and practice than most of us can imagine.
I take that as a compliment.
Hand me the best scalpel in the world and you still don’t want me doing surgery on you. I can paint with words, I can paint—sort of—with light. But I am more craftsman than artist. Jane’s surgeon was an artist—and Jane’s condition required he create the medical equivalent of the Mona Lisa. You don’t pay a person like that based on the tools they use.
The art and craft of medicine
Jane and I were lucky. At every step we encountered people who knew what they were doing at the very highest levels of their art. When we encountered people who were not, they were smart enough, and wise enough, to pass us on to those who were.
Jane’s surgeon was an artist…
That doesn’t always happen. If the nearest NET cancer specialist works a day or two away—as is too often the case—the patient is stuck. We need more NET cancer doctors, more NET cancer centers, more NET cancer research. Otherwise, it’s like a craft show with no crafters for people looking for something that works.
Photography is both a craft and an art–and I am more craftsman than artist. Surgery is also both art and craft. Jane’s surgeon was both. Without that combination, Jane would have died on the operating table.
I lived in Pittsburgh, PA in the 1950s. I remember a summer when we were not allowed to leave the yard. I remember standing in line for the first mass inoculation with the Salk the polio vaccine. My parents knew my brother, sister, and I might get polio from it. They took that risk.
…our most important resource…
Today, polio is a nearly dead disease in this country–and in much of the world. It is dead because people were willing to spend the money to find a solution to it–and others were willing to put their lives–and their children’s lives–on the line to prove that solution worked.
One man’s trial
That drive started because one man decided to do something about it. He wasn’t a scientist. But he knew first-hand about polio because he’d survived it and it’s aftermath. He could not stand without braces. He spent most of his remaining life confined to a wheel chair.
They took that risk.
He started a little charity he called The March of Dimes because all he wanted was one dime from every American for polio treatments and research. He did a lot of other things in his life. He guided the United States through the worst years of the Great Depression and World War II.
A personal trial
Laying the groundwork for the end of polio is something we forget about Franklin Delano Roosevelt. He died years before Jonas Salk developed his vaccine. He died years before I stood in a line waiting to be injected with an experimental fluid designed to protect me from the disease.
He wasn’t a scientist…
What I remember most vividly was how big the needle looked–and how scared I was of it. I didn’t know what polio was. I had never known anyone who had it. But I knew my parents had kept us all in the yard for weeks one summer because some people in town had caught it.
The first time my universe changed
Years later, I met a man who had polio in his youth in the days before the vaccine. He walked with the aid of a cane and a crutch. His one good leg dragged the other up the stairs and down the hall to his classroom every day.
I didn’t know what polio was…
The universe changed for me and many others because of a single trial of a single drug in a time I can barely remember. That trial meant I would never get polio–and that no friend of mine would ever get it. It’s why I never hesitate when someone asks me to get involved with a scientific trial–even when it puts my life or health at some kind of risk.
Jane’s personal trial
Jane shared that attitude for reasons of her own. She knew she was in serious trouble when she heard the diagnosis. She quickly learned she had cancer so advanced she was not likely to live long. There were no trials she qualified for.
That trial meant I would never get polio…
So she told her doctors to learn everything they could from her in every way that they could. She made sure I understood precisely what she meant by that. She wanted to beat NET cancer–but if she couldn’t do that and live, she wanted to make sure her death would help others with the disease–and help researchers find a way to beat NET cancer once and for all.
Our most valuable resources
There are lots of things we need to beat NET cancer: We need more doctors, researchers and lab techs; we need more labs doing both basic research and the translational research that turns that basic research into new drugs and new treatments; we need greater awareness among both doctors and the general public; and we need the cold hard cash that pays for those things.
She wanted to beat NET cancer…
But we need more than scientists and donors. We need patients and caregivers who are active participants in both treatment and awareness building; we need people willing to tell their stories beyond patient forums and support groups; we need blood and tissue samples; and we need people willing to take the same risks my parents took with the lives of their children–and their own.
The power of one trial
My wife killed her NET cancer the only way anyone with an advanced form of the disease ever has: she died and took it with her. But the way she died created new knowledge that has extended and improved the lives of other NET cancer patients. Some of you reading this are the unknowing beneficiaries of that knowledge.
…we need more than scientists and donors.
If we are going to kill NET cancer, none of us can sit on the sidelines, whether we are patients or caregivers. Awareness won’t happen by itself. Cures won’t happen without people willing to take part in trials. In the fight against NET cancer, our most important resource–fair or not–is each other.
There was no trial Jane could take part in, so she found her own way to move the science forward.
