The moment of Jane’s death six years ago stands barely an hour from now as I write this. I’ve had a miserable day, as I should have expected. I had hoped to make cookies this afternoon and do the prep work for decorating the tree tomorrow. But the afternoon dissolved into mindlessness. I should have seen this coming.
…how we can make a greater difference…
I went to a play last night–a romantic comedy I hoped would lighten my soul. It was funny if the laughter from the rest of the audience was any indication. I fought back tears, throughout. It was a play about growing old together–from wedding day to the end when only one partner remains.
Roads to recovery
Six years is a long time to mourn in the eyes of the modern world. We move so quickly from relationship to relationship, from problem to problem, from job to job. We seem committed to everything and nothing and no one. Sometimes, I think people thought Walking with Jane would prove a passing fancy–a means to heal the grief and failure I felt after Jane died. In a couple of years, I would heal and move on.
…when only one partner remains.
Yet here I am. Now some people tell me my NET cancer work and Walking with Jane hold me back from healing. That may even be right. But I can’t walk away. I know too much. I know what a cure would mean. And I know it not about faceless strangers, but about people I know and have come to care about. I know what they face in their day-to-day lives because I saw Jane’s life fighting the same disease. I know how their stories end if nothing changes.
Enter Scrooge
Each year, I go to a local theater company’s re-imagining of A Christmas Carol. Each year, I watch the George C. Scott film of the same story. I am haunted at this season of the year not only by Jane’s ghost, but by all my other ghosts as well. I know my failures intimately. And I am haunted by Scrooge’s ghosts as well. They tell me not only his story, but my own.
I know what a cure would mean.
They remind me not only of my failures, but of my successes as well. Sometimes, I focus too much on what I have failed to do–the lives I’ve failed to save. Sometimes, I focus too much on the things that have happened to me that have brought sorrow rather than joy. I understand pieces of why Scrooge became the man he became because they so resemble moments in my own.
Actions matter
Ultimately, though, I am reminded that all our actions matter. We have it in each us to save or condemn Tiny Tim–and all his brothers and sisters–or at least make the attempt. Sometimes, we will succeed and Tim will throw away his crutch and grow to adulthood. But sometimes, no matter what we do, there will be an unused crutch by the fireplace–an empty place at the table.
… I am haunted by Scrooge’s ghosts…
That we may fail is not a reason to stop trying. That the problems seem too big does not let us ignore them and walk away. We can only do the best we can with the tools we have and hope what we do will prove enough. We can’t do nothing and expect things will change on their own. If we want to save a life–any life–it is on us to do what we have to do to make that happen.
Thinking about futures
For several months, I’ve debated what to do with Walking with Jane in general–and what to do with this website, specifically. I’ve written elsewhere about how others seem to fill the niches I envisioned this site and this organization filling better than I ever have. I’ve written elsewhere about the other NET cancer oriented demands on my time. I’m still debating what precisely our purpose is in the emerging NET cancer world–a world very different from the one that existed the day Jane died.
That we may fail is not an excuse to stop trying.
I do know this website will remain in one form or another–and that Walking with Jane as an organization will not go away anytime soon. But both need more thought about their future than their past. I expect the coming months will see some changes in both in terms of content, here–and goals for the parent organization. We need, 5+ years in, to re-examine who we are and where we are going–and how we can make a greater difference in the world.
Each day is a journey down an unknown path. Sometimes we can work out where it is headed. Other times, we can’t. Today’s path was predictable. It was the sixth anniversary of Jane’s death.
This post finishes the 30 Day Walking with Jane NET Cancer Awareness Month Challenge. I hope you’ve found things in it of use. I’ve tried to deal with subjects that matter to both patients and caregivers. I’ve tried to create hope in what is too often a bleak landscape. But I’ve tried to be realistic, as well.
It was easier when I was numb…
The truth remains, nearly six years after Jane’s death, that we still have no cure for NET cancer. We’ve made progress at improving patients’ quality of life. We’ve given them longer and better lives. We’ve begun to understand some of the underlying mysteries that make the disease so difficult to diagnose and so difficult to treat. And we have some newer and better ideas about how to proceed.
Knowledge challenge
We need more researchers and more research. That means we need more resources–a lot more. But things have improved on that front. We have nearly eight times as much money to work with as we had six years ago. That still doesn’t amount to a rounding error on what we spend on other cancers. But it is a bigger rounding error.
…I’ve tried to be realistic…
Six years ago, Jane’s 26 days in the hospital doubled our knowledge of the disease. And what we spent on her care over the last three months of her life nearly equalled the total we spent on research in the US–from all sources–that year. The post surgery treatment plan we talked about then included things no NET cancer patient had ever tried. Today, liver embolization is often something NET patients are offered–as are many of the other things we talked about as possibilities.
Diagnosis and treatment challenge
Patients in the US had octreotide–and little else, six years ago. Afinitor (Everolimus) had just been approved, but only for patients with pancreatic NET. Patients who could find the money could fly to Europe for PRRT. Patients who couldn’t went without–and sometimes died as a result. Today, there is Lanreotide, as well as Afinitor. The results of the PRRT trial sit on a desk at the FDA awaiting approval, as do the results of the Telotristat trial.
We need more researchers and more research.
Six years ago, NET cancer was all but invisible on every scanning device we had. Then researchers developed the Octreoscan, which lit the tumors up like a Christmas tree. Now, we have begun to see implementation of the even better Gallium-68 scan that shows the tumors in much higher definition. But we still lack a simple, affordable, and widely available blood test as a diagnostic tool. Doctor don’t like ordering expensive tests for a disease too many have still never heard of.
Awareness challenge
Awareness, however, remains a problem. Medical schools do a better job of raising NET cancer as a possibility than they did ten years ago. But we do too little in-service trying and consciousness raising with general practitioners. And too many doctors who have heard of it brush off testing for it because they believe it is too rare to consider.
Patients who couldn’t went without…
Awareness among the general public is even worse. If I say I am doing the MS or Cystic Fibrosis Walks, most people know what I am talking about. I’m still waiting for the moment a stranger tells me they’ve heard of NET cancer when I tell them what I do. Yet the number of cases of CF and MS diagnosed each yer combined is less than the number of cases of NET cancer diagnosed.
The challenge of patient knowledge and support
Patients have far more access to information than they did six years ago. We have more patient conferences. We have more support groups–including groups that exist online and on Facebook. And we have books and articles written specifically for patients. People used to say that anyone who’d been a NET cancer patient or caregiver for three months had the equivalent of a Ph.d in the subject.
Awareness, however, remains a problem.
I suspect that level of knowledge takes a bit longer to get than it once did. We know more now than we did then. But this often means patients still know more than their primary care doctors do about NET. Sometimes, especially if they are not seeing a NET cancer specialist, they know more than the oncologist they initially see who ends up running their treatment. Too many patients and caregivers still have to be strong advocates for themselves if they want to get the best treatment.
Caregiver challenge
And then, there’s the challenge we too often forget about or brush over. Caregivers are in a tough spot, regardless of the illness their other half faces. Their difficulties multiply when they face a disease as debilitating as NET cancer. At times, I felt trapped and overmatched by the enormity of Jane’s last days. Some days, I still do. Over the last several days of this challenge, I’ve written a series of posts on how to be a better caregiver.
Patients have far more access to information…
This morning, I got a note from another caregiver: “How does the caregiver overcome self-recrimination?” he began. (You can read the rest of his note here, at the end of yesterday’s post.) I intend to write a post on dealing with the aftermath of losing a loved one you’ve been the caregiver for later in December. But his plaintive response underlines what a poor job we do of helping lay caregivers deal with what they encounter. We desperately need more dedicated resources for people in that role, no matter what disease they face. Letting us lurk in patient support groups is not enough.
Personal challenge
For a bit more than six years, I’ve knowingly dealt with NET cancer virtually every day. I’ve done that while trying to deal with all the other aspects of my wife’s death. It was easier when I was numb most of the time–which was the case for much of the first five years after her death. Sometime in late 2015 or early 2016, I started to hurt. It’s been awful. I have days when getting out of bed is a struggle. I make plans and lists but have entire days that vanish in aimless wandering. So I’m taking a break–intentionally this time. I can’t say how long, because I don’t know. A good chunk of December, I suspect, at a minimum.
Caregivers are in a tough spot…
I’m going to sit and cry for a while. And I’m going to think about the other promises I made Jane beyond killing NET cancer and putting up the tree. Those, I’ve worked at keeping. But I also promised her I wouldn’t stop living; that I’d let love come into my life again–and give that opportunities to happen. I promised her I wouldn’t spend the rest of my life as a hermit in a cave. I haven’t done very well at any of that. It’s time I did better at honoring those promises.
Each promise I made to Jane is a challenge that makes my life, life. I finished putting together my outdoor decorations this afternoon–a promise I made Jane about how i would continue to honor the holidays we both loved.
Self-care is the last thing most caregivers want to hear about. They focus on the patient and their needs. Taking even a minute from that work can–and does–feel like a betrayal. Sometimes, even the patient sees it that way. There were times Jane certainly did.
…we will laugh again…
But we lay caregivers ignore self-care at our peril. If we don’t take care of ourselves, there will come a point where we can’t take care of the person we love. We have to have our wits about us. If we don’t get enough sleep or enough to eat, we won’t be sharp when we need to be. And never mind what would happen if we got sick.
The caregiver’s journey
I’ve never faced greater difficulties mentally, physically, or emotionally than I did over the four months from Jane’s diagnosis to her death. I lost 20 pounds. By the end, I walked like an old man–literally shuffling from place-to-place. Some would say I still have not recovered my sanity. I know I am only now coming out of the numbness that loss engendered.
…we lay caregivers ignore self-care at our peril.
And four months is nothing when it comes to NET cancer–or many other diseases. My mother suffered with Alzheimer’s the last 20 years of her life. My father stayed at her side constantly for every one of those years, despite heart problems of his own that led to a quadruple by-pass. I marvel at that. And I marvel at the many husbands and wives who have faced NET cancer together for years and decades.
Balancing self-care with patient care
Self-care is very much a balancing act. You have to know the difference between what you need and what you want. And you have to stay aware of what the patient really needs as opposed to what they want. This is especially true in the late stages of the disease where any absence feels like a betrayal to you both. If I were gone for a full day to go home and pay bills and pick up clean clothes, I knew Jane was not going to want anything to do with me when I got back.
By the end, I walked like an old man…
But I made those trips anyway. I couldn’t forget where Jane was. I couldn’t ignore the guilt I felt. But each trip enabled me to believe Jane would come home eventually. Each trip proved to me, somehow, that she was getting better: See, I could leave her and nothing bad happened.
Physical self-care
From the beginning, you have to take care of yourself. The first piece of that is taking care of your physical needs. You may not want to eat, but you have to. And fast food, tempting as it is, is not the right answer here. You need the proverbial balanced diet. You need to eat at regular intervals so you avoid gorging yourself when you do eat.
Self-care is very much a balancing act.
For me, personally, that means a good breakfast to start the day. Stay away from the donuts. The sugar high will only make you hungry sooner–and the crash will tend to make you feel depressed. It’s hard to keep the patient positive if you look depressed. Eggs, oatmeal or low sugar cereal, fruit, or yogurt are all good choices. Lunch and dinner also have to be health conscious meals. They need good protein sources, good carbs and vegetables. Snacks between meals are fine, but make healthy choices there as well. The occasional candy bar won’t destroy your health, but too many will become a problem.
Benefits of daily exercise
Self-care also requires exercise. Even when Jane was in the hospital, I got in a walk every day–usually after I’d had lunch or dinner. Walking does more than keep your muscles working. A good walk–or any sustained physical exercise–releases endorphins that improve mood and attitude. If you like working out in a gym, go there. It will also provide you with socialization beyond what you get from doctors and nurses. Seeing people who are not going through what you are can be a good thing.
Stay away from the donuts.
I don’t like gyms. There is a set of free weights in the basement–nothing heavier than 10 pounds–and I work with them every other day. I do lots of reps to maintain muscle tone and stamina. I missed that when Jane was in the hospital. I’ve since thought a half-hour in a gym might have been good for me mentally and emotionally, but I wanted to be close by if Jane needed me. I restricted my walks to the neighborhood when Jane couldn’t walk with me anymore.
Self-care for the mind
Avoid alcohol or “recreational” drugs. Either can cloud your judgement. Alcohol is a depressant–as are many other drugs. Neither of us used drugs at all or drank beyond a glass of wine or beer with dinner once a week. We stopped drinking even that much–save a glass of champagne on our anniversary–after Jane’s diagnosis. It was nearly a year after Jane’s death before I had a beer again. I didn’t trust myself not to climb into the bottle and hide there.
Self-care also requires exercise.
In retrospect, I think counseling would have been a good idea for me after Jane’s diagnosis. I needed more coping skills than I had. And I certainly needed someone non-judgmental to simply listen to what I was feeling and experiencing. Frankly, we already had too much on the table at that point; I don’t know where the time would have come from. I’ve sought out some counseling since, but haven’t found anyone I really trust crawling around in the dark spaces of my mind, yet.
Emotional self-care
Laughter is an important balm for both of you–but especially for you. You need to find times and ways to laugh. Buy or rent a DVD, or go on Netflix and find the kinds of comedies you like that make you smile. It’s hard to do, I know. We reached a point where any time I suggested we watch a comedy together, Jane got mad. I stopped making the suggestion, but looked for small bits of humor when I went to the cafeteria to eat or went for a walk. Laughter cleanses the soul and gives us a momentary release that lets us face more hardship than we might otherwise.
I needed more coping skills…
Some people find strength and solace in prayer. If you do, don’t hesitate. I spent time in a nearby church and more time in the hospital chapel. I became friendly with a couple of the chaplains. Honestly, it didn’t help much. But I know others who swear by it. Just don’t push your faith–or lack thereof–on the people around you. It’s insulting and hurtful when people need to have their attention on other things than what you believe, or want them to believe.
Solace in others
Do talk with others in your situation about what they are going through. Listen to what they say has worked for them in keeping their sanity. One of the best pieces of advice I got was from a woman who’d nearly lost her husband to heart disease. She talked to me about how important being upbeat in Jane’s presence all the time was to Jane’s survive as a patient. But she also told me to remember the experience caregivers have is very different from what patients experience. Our needs are different–and they matter every bit as much as what the patient needs. We really need more support groups for caregivers.
Laughter is an important balm…
If you go to Relay for Life, they have a huge celebration of survivors. Sometimes they are accompanied by their caregivers, but the survivors are the center of attention–as they should be. The caregivers’ lap comes much later in the program–and often feels like an afterthought. Until you’ve been a caregiver locked in a life-and-death struggle with someone you care deeply about, you don’t get it. As emotional as the Survivor Lap is for me, it pales beside what I feel when I am on the track with my fellow caregivers, especially those who have lost someone to cancer in that role.
The final journey together
With NET cancer, the reality, right now, is that eventually, we are going to fail. Barring a major breakthrough on the research front, there will be a final trip to the hospital and a final bedside vigil in our future. We will stand at the head of the line at the wake, sit in the front pew at the funeral, and be the last to leave the grave. Eventually, the numbness will go away and the hurting will start. I know. I’ve been there–and still am.
Our needs are different…
Someday, we will laugh again, without feeling guilty or feeling that we failed. We’ll know–in our hearts as wells our heads–we have done the best that we could do–and that will be enough.
Self-care continues even after the patient dies. Training for my first Jimmy Fund Walk helped keep me sane in the months after Jane’s death.
Any doctor visit is taxing–even when you are in good health. At least they were for Jane and me. And once you have a cancer diagnosis and appointments that are not ten minutes from your door, things get worse. The key to easing some of that stress comes down to prior preparation and then following through when you get there.
Good preparation is critical.
When I go to the doctor, I always go with a written list of questions, a notepad and a pen. Like most people, I get nervous in the presence of those white coats. If I don’t have my questions written out, I know I’ll forget to ask something I’ll regret later–like making sure to get a refill order for my prescriptions.
Cancer complicates things
My medical issues are pretty straight forward compared with any cancer. And NET cancer is about as complicated as cancer gets, at least in my mind. In addition, I wasn’t keeping track of things for myself; I was trying to make sure I understood what was going on for Jane.
…I know I’ll forget to ask something…
That meant spending time the night before talking over her experiences over the past days or weeks. I needed to know what had changed in her body. We needed to figure out what questions those things raised, both in her mind and mine. You don’t always get those things from routine conversation or daily observation. For example, I went to work every morning. I couldn’t tell how many bowel movements she had in the course of the day.
Finding the truth
And Jane was very good at hiding her pain and increasing lack of mobility. Any cooking or organizing she did took place during the day. I knew she went up and down the stairs, but only saw her difficulties on them when we went out together. I observed constantly, mind you. It just wasn’t enough.
…NET cancer is about as complicated as cancer gets…
In some senses, our conversations the night before an appointment became a rehearsal for that appointment. I asked the same kinds of questions I knew Jen would ask the next morning. Sometimes what she told Jen was very different from what she told me. I had to call her on it when she understated something. Jane didn’t always appreciate that.
Honesty and equality
But my job required her doctors have the most accurate information we could provide them. Love sometimes requires a toughness we’d like to avoid. Fortunately, Jane understood that most of the time. Caregiving is built on love and trust. You have to nurture that constantly. Maintaining honesty is part of doing that.
Jane didn’t always appreciate that.
But it is difficult–especially when you’ve been equal partners from Day One. Over time, caregiving can shatter that equality if the patient becomes increasingly unable to make their own decisions. With NET cancer, as the disease evolves, that increasingly becomes the case.
Two kinds of questions
Knowing accurately your partner’s physical and mental condition is only part of the preparation. The other is coming up with the questions that need asking and answering. You have one set of questions going in: Can I keep walking every day; why hasn’t the medication addressed the swelling in my legs; what does this sudden dizziness when I get off the toilet mean?
Caregiving is built on love and trust.
But other questions arise because of the conversation with the doctor. Part of that derives from the fact doctors often speak in medical terms rather than human ones. I remember one of Jane’s mother’s doctors who seemed to think everyone in the room had a medical degree, including Jane’s mother who had not graduated from high school.
Understanding doctor speak
Jane often understood her doctors better than I did. She taught biology and chemistry and understood how the two things related to each other. I was an English major. I dabbled in the sciences, but not at Jane’s level–and certainly not at the level of her doctors. And I had to understand what they said because Jane relied on me at home to know what needed doing.
…doctors often speak in medical terms…
Fortunately, I don’t mind asking seemingly stupid questions. I’d rather ask until I understand than pretend I do. As one of my students said, “Stupid people don’t ask stupid questions. Smart people do.” It’s a mantra for good journalists–but also a mantra for good caregivers. We have to understand what a doctor tells us with a good level of certainty. Ask until you understand.
Take notes
I carry a notebook with me everywhere I go. It’s a habit I picked up as a young journalist. Caregivers need to make sure they always have one with them as well. First, it’s a place to write down questions and observations as they come to you between doctor visits. The night before an appointment, you organize those things so you won’t miss getting them into the doctor’s head the next day.
…a mantra for good caregivers.
During the visit you take notes on everything: weight, blood pressure, test results, examinations, observations, recommendations. You check off each questions as it gets asked and take notes on what you get for an answer. You write down other questions as they occur to you from what the doctor says. And you record those answers as well. Before you go out the door, you need to check to make sure every question got an answer you understand–and that you left nothing out the doctor needed to hear.
Discuss what you learned with each other early
Ideally, you should be able to reconstruct the entire appointment accurately from your notes. And you want to do that with the patient as soon afterward as you can to make sure you both heard the same things. Your notes will likely be more accurate than their memory, however. And those notes will help you understand how things have changed since the last visit–or the first visit.
…take notes on everything…
From doctor visits we get the information we need to have to take better care of our partners and make better decisions down the road about treatment options. Good preparation is critical. Don’t neglect it. But remember, you have to do all of this and be emotionally and physically supportive at the same time.
Jane hated going to the doctor, but she knew prior preparation made the visits more productive.
On Giving Tuesday, help fund NET cancer research through a donation to either your local NET cancer center’s program or to a national or international organization working on NET cancer.
Support NET research on Giving Tuesday
I’m taking a break today from the heavy emotional work of the caregiving series. Instead, I want to talk about something equally important. I want to see the day when series like that no longer have meaning. Tomorrow, Giving Tuesday, is our opportunity to help things in that direction.
…every dollar counts.
Words and prayers won’t bring us a NET cancer cure. Only knowledge will do that. And knowledge comes at a price. It takes years to become a doctor. It takes years to acquire the skills and habits of mind a researcher must have. Those people have bills to pay and children to feed just like anyone else. They can’t work for free.
Research isn’t cheap
They can’t find the new knowledge that will lead to a cure without lab space and equipment to do it with. That space and equipment needs heating and cooling and maintaining and cleaning. All of it costs money–money we don’t have–and won’t have–without your support.
They can’t work for free.
Neither government nor pharmaceutical companies pay for basic research. That’s reality. Drug companies only become interested when they smell nearly immediate profits. Governments don’t like spending money on experiments that may fail. Every fundamental breakthrough comes directly from charitable donations.
The starving orphan
NET cancer is an orphan no one wants to adopt. We live on the table scraps left after the dog finishes with them. We have no celebrity spokesperson, no cute poster-child, no regular presence on media of any kind that people pay attention to. And we share a zebra mascot with hundreds of other destitute, abandoned children.
All of it costs money…
Tomorrow, on Giving Tuesday, I’ll write checks to support literal orphans. I’ll write checks to support literal homeless people, literal hungry people. But I’ll also write additional–and substantial–checks to groups doing NET cancer research. I hope you will do likewise by making a donation–online or by mail–either to your local NET cancer center or to one of the organizations and funds below.
The NET Research Foundation funds research into NET cancer not only in the US, but also around the world. They also support patient conferences that help raise awareness and supply patients with the latest information. In addition, they fund conferences that bring researchers together to talk about what they are discovering.
NET cancer is an orphan no one wants to adopt.
The Carcinoid Cancer Foundation is the oldest foundation working on NET cancer. Their website is the best place for new patients to find the full range of information they need on their NET cancer journey. They also do patient conferences similar to the NET RF, but in different regions.
The Healing NET Foundation provides a range of online resources for patients, including a book on NET cancer and support groups. They host a monthly conversation with one of the leading doctors in the field on their Facebook page, Dr. Liu’s Zebras.
Overseas and local
Internationally, you can’t do better than support the NET Patient Foundation. They have a full array of support groups and information. They also support research.
There are many other regional and international groups also worthy of your support this Giving Tuesday. It doesn’t matter to me where you make your donation. It only matters that you do. In NET cancer research, every dollar counts.
Popular culture has accepted Kubler-Ross’s Five Stages of Grief as truth. Studies done since her book, On Death and Dying, was published have poked lots of holes in the idea, but people still think of it as reality. It serves as the base for how lots of people deal with the loss of a loved one. But the model doesn’t really deal with how people deal with a death after it happens. It tries to deal with what a person confronting a serious or fatal illness goes through, stage by stage.
…always act out of love.
She based her ideas on her observations of people who knew they were facing a fatal injury or illness. I suspect that patients go through something like what she describes in coming to terms with their own death before it happens. I suspect spousal caregivers go through something similar while their loved one still lives.
It’s pre-death–not post
But after six years of living with the loss of Jane–and talking to many other widows and widowers–the five stages concept operates as a comforting myth for those who have not experienced the loss of a spouse. It has little bearing on the reality of our lives after a husband or wife stops breathing. Even after we’ve accepted the death as real, it still hurts like Hell.
…people still think of it as reality.
But it is a useful thing for caregivers to understand on two levels. First, the patient does go through much of what the theory states. Where they stand in that process influences their attitude and how they deal with things. And we, as caregivers, go through those stages not only with the patient, but in our own minds as well. The problem is, we don’t often go through them at the same pace. That can create frustration on both sides.
Stage 1: Denial
Jane and I were both in denial for a long time. She wanted to believe her shortness of breath and loss of stamina can as the result of her slow recovery after the flu. I believed that, too. But we remained in denial even after her diagnosis with NET cancer. We accepted the rosiest version of things until the condition of her heart shattered all of our illusions.
…it still hurts like Hell.
And yet, part of me remained in denial until the day before she died. We need to understand the constant overlap of all the stages. Just because we get angry doesn’t mean we’ve left denial behind. Even when we reach the last stage, acceptance, traces of all the other stages remain. Death may resolve all of this for the patient. We can’t know that. But it doesn’t resolve everything for the caregiver. It compounds the issue with the bitter emotions of actual loss. But that is a topic for another day.
Problems denial creates
Denial can slow access to treatment. Because we kept coming up with what seemed reasonable reasons for what Jane experienced in the months after her battle with the H1N1 virus, we didn’t really worry about putting off seeing her doctor. Jane felt under pressure to make up the ground she had lost with her AP biology students. Pressure always gave her increased diarrhea and insomnia.
…the condition of her heart shattered all of our illusions.
A diagnosis six months earlier likely would not have meant much in terms of longterm prognosis in Jane’s case. But with a different cancer, it might have. I’ve seen many others put off dealing with symptoms to their detriment. Denial creates a kind of deadly inertia both patients and caregivers need to fight. I still wonder if we had gone for the heart surgery earlier if it might have made a difference–though I’ve been told multiple times it would not have. Denial of the seriousness of her heart condition did convince us that waiting would be OK.
Stage 2: Anger
Of the five stages, anger may be the hardest one to deal with. Anger is a blind emotion and causes us to lash out at those closest to us. I was quick to anger as a child. It made me so violent I considered myself a danger to both others and myself. I sublimate anger constantly and try to direct it in useful directions when I have to let it out. But the depth of anger is sometimes too great to control and it leaks out in unintended ways. I hurt people with some frequency when Jane was sick–and for a long time afterward. I cut people with my words without knowing it until someone pointed it out.
Denial can slow access to treatment.
Somehow, I managed to largely keep my anger in check where Jane was concerned. But I made clear from the outset that she could use me as a target for her anger at will–and that I wouldn’t return her anger with anger of my own directed at her. I used a kind of sleight-of-mind for that. I discovered that if I took the blame and apologized, even if I had done nothing wrong, it eased her anger. And I convinced myself that, much of the time, it was the cancer I was talking to and not the woman I loved. Not that I didn’t sometimes giver her cause for anger–and it horrified and angered me every time it happened.
Stage 3: Bargaining
I don’t know what kinds of bargains Jane made–or tried to make. I suspect part of her willingness to let her doctors study her was part of one of those bargains. Jane did not like strangers poking and prodding her under the best of circumstances. I know the scientist in her would not, however, have allowed her to do otherwise than she did. And our conversations showed me clearly what she wanted.
Anger is a blind emotion…
I do know I went into bargaining mode pretty quickly once we had a diagnosis. From my reading, I knew just how much trouble lay ahead of us. I knew we had one of the best oncologists in one of the best cancer centers in the world working with us. I knew we had access to the best cardiologists and surgeons in the world. But I also knew we needed miracles stacked on miracles.
Bargaining scars
I believe in higher powers, But we haven’t spoken since Jane died. A chunk of the anger I stored during Jane’s struggle rages in their general direction. To tell the truth, though, most of it gets aimed at me. I failed her. That failure places me in a special kind of Hell. My efforts did nothing but stretch out her suffering. My bargains didn’t work.
…we needed miracles stacked on miracles.
You can’t bargain with mindless cancers. You can’t bargain with mindless death. Consciously and intellectually, I know that. But emotionally… For caregivers, the emotional scars those bargains leave behind are significant. Losing them feels like a personal failure we should have found a way to avoid. That we didn’t scalds our souls. But that, again, comes after they die, not before.
Stage 4: Depression
Depression takes many forms–and caregivers, wrapped in their own anger and depression and the daily duties of the work, may not always see it in the patient when it arrives. And it comes and goes for them the same way the other stages do for both of us. I remember Jane’s reaction when I told her I wanted to take an extended leave from work to stay home with her first semester.
You can’t bargain with mindless cancers.
“Why? So we can sit here and stare at each other?” she said. Her voice was angry, but her words told me she was already depressed. Yet a week later, after our first trip to Dana-Farber, she was enormously upbeat and positive. A week later, she was screaming at me in a fast food parking lot. Honestly, I often didn’t know who I would be talking to from one minute to the next. Part of that had to do with her fluctuating serotonin levels. With a NET cancer patient, you can’t always be sure where the emotions come from. It complicates everything. But she also had the very real depression that goes with dealing with a fatal illness, especially in its late stages.
Roots and complications
For either individual, the illness shatters all the plans you’ve made together. It destroys all your hopes and dreams for the future. If all that didn’t depress you, outsiders would question your sanity or your commitment to each other.
It complicates everything.
Some people self-medicate under these circumstances. Jane and I, never heavy drinkers in anyone’s mind, essentially stopped drinking all together after her prognosis became clear. We both knew alcohol for the depressant it is. It would only make things worse. We both knew we needed clear heads for what we faced–and that any drug–even something prescribed–would hurt our ability to function rationally when we needed to.
Stage 5: Accepting death
Eventually, the patient accepts the reality of their own death. I suspect they get there earlier than caregivers do. Part of that is the need for the caregiver to stay positive no matter how long the odds are. I even managed to put a positive spin on telling Jane we were out of options and that in the morning we would take her off all the machines that were helping keep her alive. I think she was annoyed that she woke up for us to tell her what she already knew.
It would only make things worse.
Caregivers need to stay aware of when the patient reaches the point of acceptance, even if the caregiver hasn’t arrived there yet. Patient acceptance creates subtle changes in the dynamic between patient and caregiver. You have to be able o look at the big picture in terms of what you know that they may not in terms of options and where they are in their care. But their needs and wishes need to guide you. The two things can create a real tension between you.
The end
I screwed this up. Jane told me two nights before she died that, despite her condition, she wanted to go home. I knew she was frustrated with the pace of her recovery. I knew she was tired of bed pans and feeding tubes and having others change her bedclothes. And I thought that was all this was. We’d been here before.
Caregivers need to stay aware…
But she could feel the end coming in ways I could not. She wanted to die at home, in her own bed, in our own room. By the time I knew what was going on, it was too late for her to do anything but die in that hospital bed. On the other hand, she might have lingered longer at home than there–and she wanted life over.
Lessons from the stages
The lesson for today, then, is this: Pay attention, both to what you and the patient are feeling at any given moment. Listen to what they are saying and what they are not saying. Know that you are not necessarily going to be in the same emotional stage at any given time. You need to give that due consideration in whatever you do.
…she wanted to go home…
My last, best, advice on this topic is always act out of love. Then, even if you make mistakes, you’ll have a better shot at living with yourself afterward. It still won’t be easy–but it’s all that has kept me even remotely sane since.
No stage of this process is simple black and white. The shadows overlap into shades of gray that may or may not be dominated by the bright emotion of the moment.
Studies have shown patients with a positive attitude do better in the longterm than patients at the same stage with a negative attitude. While the patient plays a large part in that, the task of nurturing and maintaining that attitude often falls squarely on the lay caregiver.
…the sickness and death part.
Outside of a hospital or nursing home setting, no one sees more of the patient than the spouse. If your attitude is negative, their attitude will rapidly decline. So no matter what, the caregiver has to remain positive. No matter what the news, we have to find a way to turn it into a positive–or at least keep smiling in their presence.
On the rollercoaster
This is not easy. After Jane and I first met with her Dana-Farber oncologist, we were very happy. Jane and Jen had hit it off immediately. They’d given her the first shot of Octreotide and she felt hungry on the way home. She’d been able to eat without pain for the first time in months. We had every reason to believe Jane would have a reasonable quality of life for at least a couple of years. And given the pace of medical advancement, two years might well mean something new to buy her more time.
…the caregiver has to remain positive.
A week later, we got the results of the scans of her heart. Both the valves on the right side of her heart were leaking. They were causing the swelling in her legs and abdomen. The serotonin created by the tumors in her liver had fried those valves. The prognosis destroyed all the good feelings of the previous week.
Shattered attitude
Jane was convinced those results represented “Game Over.” The cardiologist had said otherwise, but that didn’t matter. Jane’s positive attitude crumbled. My own mind was reeling. We’d gone from good chance to barely fighting chance in seven days. For the first time in many years, we had an argument about something other than the real issue we had to deal with.
This is not easy.
I ordered the wrong hamburger. I did it. I admit it. I hadn’t understood what she wanted and thought I did. My mind was as wrapped up in pain as hers. I’d spent the previous hour trying to ignore what I felt so I could buck her up. My brain seized up. Now, she wanted divorce because I wasn’t listening.
Shared attitude repair
We came down off that ledge as we realized how scared we both felt. We both knew she still had a fighting chance, but the odds no longer felt in our favor. We both knew we could improve those odds if she could just stay positive. My job was to help her do that. That meant I had to turn down my fear so I could hear what she said and felt. She was terrified that I would desert her. She saw me angry only twice after that–and I wasn’t angry at her in either instance.
Jane’s positive attitude crumbled.
I did sometimes get frustrated and angry with her. But I made sure she never saw that. Over time, I became better and better at separating Jane from her cancer, in both my mind and my emotions. But it required a constant effort. Lack of sleep and constant worry didn’t help. Self-care, however, is a subject for another day.
Maintaining independence
Maintaining your own positive attitude–or at least the illusion of it–isn’t easy. You have to smile even when you are hurting so badly you want to scream. And it has to be a real smile that reaches your eyes.
…we realized how scared we both felt.
But that isn’t enough. Any cancer–any debilitating illness or injury–requires finding a way to let the patient maintain their independence as long as possible. Jane’s world shrank a little every day. We liked to go for walks, so we drove to a flat area and walked every day for as far as she could manage. We shared all the household chores, so I put off taking them over as much as I could. We did all the shopping together, and I kept taking her with me until she told me she just couldn’t do it anymore.
Into darkness
And every time she had to take a step back, I had to find a way to put a positive spin on it. Once they replaced the valves in her heart, I’d tell her, she’d walk again, do chores again, go shopping again. I reminded her we were partners–and that she would be doing the same for me when I got sick. In all of it was the promise that she would be well again. In my head, I might have had doubts, but those doubts never made it to my heart–or to my face.
Jane’s world shrank a little every day.
Jane was still unconscious when they let me into see her after her heart surgery. They warned me what to expect when I saw her. But nothing can really prepare you for the dead white complexion or all the wires and tubes running in and out of the body. Yet even then, I knew I had to be positive and upbeat. A person in a coma can hear what is going on at a subconscious level. I talked to her, told her I loved her, held her hand. Then the nurse told me it was time for me to go get some sleep.
Positive unto death and beyond
I made sure I was there the next morning well before the first time her eyes opened. And I did everything I could to stay positive for her until her last breath. I walked her through three comas, talking to her and holding her hand. When she died I was telling the nurse the story of Jane’s life and the powerful, positive influence she she’d had on so many students’ lives.
A person in a coma can hear…
Even after her last breath, I tried to keep thinking and acting in a positive way. I don’t know how long after she was pronounced dead she was still aware of what was going on around her. I wanted her to know love even then.
The hand we’re dealt
The person taking care of someone with a fatal disease faces an endless rollercoaster ride of emotions. And those emotions belong not only to you, but to the patient as well. To a large extent, you end up putting your emotions on hold at times. That has dangers of its own that may require professional help when the ordeal ends. It has taken a long time for me to begin to feel anything approaching normal again. Three years passed before I could really cry again–and only now does it happen the way people would expect it should have after Jane died.
I wanted her to know love even then.
Rule #3: Do everything you can to keep the patient positive, even when it means never letting them see you sweat. Don’t count the cost until the dealing’s done. If you understand accept the marriage vows, this is the sickness and death part–and the love and cherish part.
Even now, nearly six years after Jane’s death, I try to maintain a positive attitude. Jane may be gone, but there are patients who need to maintain their positive attitude as they fight NET cancer.
Some patients want to know everything they can about the disease they are facing. They cruise the internet, join support groups, pepper their doctors with questions. Others don’t want to know anything. Part of that may be denial. Part of it may be fear. And part of it may spring from the knowledge of how poor information garnered from the internet can be.
A NET cancer diagnosis changes everything…
Regardless how the patient feels about information, caregivers need as much knowledge about the disease as they can get. Caregivers often become the patient’s best advocate. That means we have to be able to carry on an intelligent and informed discussion with medical staff at every level. Sometimes, that means understanding what a doctor is saying and not saying. Other times, it means educating people about the disease and drug interactions they may not have seen before. And sometimes it’s about helping the patient understand what is going on.
Knowledge for the advocate
For caregivers facing a rare disease like NET cancer, this is especially true. Unless you deal with a NET specialist, you will often likely have more knowledge of that illness than your doctor does. While Jane and I quickly fell into the hands of a NET specialist, none of the nurses in the cardiac ICU had ever heard of NET cancer before. They had a one page sheet designed to give them the background they needed, but I needed to fill in the gaps for them and, at times, the doctors on the floor.
Caregivers become the patient’s best advocate.
Six years after Jane’s death, most doctors still have never heard of NET cancer. Even many general oncologists have sketchy information at best. As Jane’s first oncologist said to us, “I’ve heard of carcinoid (NET) cancer, but I’ve never seen a case.” Her ego was small enough she had no hesitation in sending us to Dana-Farber where they had people who had more than heard of the disease before.
Dangers of ignorance
But that doesn’t always happen. Sometimes, the nearest specialist is a long plane ride away. Sometimes a doctor decides they can handle NET cancer if they just read enough. And sometimes, they think it works like any other cancer and decide they can cure it by traditional methods. So they set up a standard chemo or radiation regimen and move forward, not realizing those treatments do nothing for NET cancer.
…I needed to fill in the gaps…
Finding good information about NET cancer, while difficult, is better now than when Jane was diagnosed. For example, in 2010, the American Cancer Society had no real information on what they still call carcinoid cancer. Their failure to keep up with the name of the disease most now call NET cancer makes a search of their site more difficult than it needs to be–but at least they have information now.
Sometimes, however, the links on any of those sites prove daunting to a lay reader. We try to make things easier here, but the best site at talking in lay-friendly language is patient Ronny Allan’s Living with Neuroendocrine Cancer blog. Ronny has a real gift for putting the complex bits of NET cancer into language real people can follow effortlessly. He posts something new every few days. Sometimes, he talks about research. Others, he talks about his own experience. Both have value.
What patients think and feel
For caregivers trying to figure out how and what a patient thinks about, the latter pieces have great value. Even as well as Jane and I communicated, sometimes she baffled me. Sometimes, I knew I was talking to her cancer, not her. Other times–I’m still trying to decipher what she was thinking and feeling. Reading some of Ronny’s posts helps with that.
Ronny has a real gift…
The posts of other bloggers can help there as well. Understanding what a patient goes through–even at second-hand–can be a big help. There were things Jane simply would not talk about no matter how I approached them. And observation rarely does enough to explain the internal things a patient faces.
Power of knowledge
So critical piece of advice #2 boils down to this: Knowledge is power–and you need all the knowledge you can get. You can get some of that information by reading and some of that information by talking with the doctors who know something about the disease. The second of these is especially important because things are changing very quickly when it comes to our knowledge of NET cancer.
…I was talking to her cancer…
One of the online support groups, Dr. Liu’s Zebras, can help with that second part. They do an online Q&A with Dr. Eric Liu, a surgeon who specializes in NET cancer, once a month. It’s private group–and you have to ask to join–but that piece alone gives membership great value. Another good group for this is NET Patients Sharing Knowledge & Experience. They are not a traditional support group, as they avoid posting anything that does not have a science knowledge or practical treatment experience piece to it. They are a forum for the latest information available on everything from the science to insurance coverage for treatments.
Keeping up with each other
But the most valuable pieces of information come from the patient you are supporting. We all like to think we know our spouses pretty well. But six years after Jane’s death, I’m still learning things about her I didn’t know. We tried to keep up with each other’s evolving thoughts and ideas. But conversation using words and body language moves slowly and can’t always keep up. Illness complicates things further, especially when the disease comes with embarrassing symptoms like NET cancer can.
…you need all the knowledge you can get.
I’ve written a post about the conversation every couple needs to have on a regular basis about severe illness, injury and death. But communication of every kind on every important topic becomes much more critical under these circumstances. A caregiver needs to really know the person on the other side of the equation to really do the job well. NET doctors say that when you’ve seen one case of NET cancer, you’ve seen one case. The same applies to being a caregiver. The better you know your either half, the better this is going to work.
Know your selves
All the medical information in the world won’t prove very helpful in your task if you don’t know your spouse and they don’t know you. A NET cancer diagnosis changes everything–and you need to talk about that together. And the patient, if they are going to trust you to make decisions when they can’t, needs to know you as well as you know them. Talk!
A caregiver needs to really know…
Do it by yourselves if you can, or get help if you need it, but talk about what you think and what you feel. It matters–both for now and for the future.
Walking with Jane works to build knowledge about NET cancer for a lay audience while attempting to help fund the research that will create new knowledge.
It’s Thanksgiving in America tonight. It’s a time for counting ones blessings, thinking positive thoughts, and being thankful. In recent years, I’ve forgotten that. I’ve focussed instead, some would say become obsessed, on Jane’s last Thanksgiving and what happened that day.
…I am thankful for every crumb.
But a friend pointed out to me this week I spend too much time in the past. Another pointed out I spend too much time alone. And a third expressed concern for my sanity. So, tonight, I break with recent tradition and try to look at what I have rather than what I’ve lost.
Thankful for what we did have
Jane and I didn’t have enough time together. But I am thankful for the nearly quarter century we did have. Yes, we only had 21 years, three months and eight days of marriage. But we lived in each other’s souls for the nearly four years between the day we met and the day we married–and every day thereafter. We got to the “‘Til death do us part” moment most never get to see.
It’s Thanksgiving in America tonight.
And I am thankful for our friends who held both our hands through those last days–and have not let mine drop since. Gail, John, Morgan, Arlyn, Scott and Wendy and their kids, sheltered my soul from the blizzards and ice storms of despair. And as those storms have eased, they’ve helped me rebuild a semblance of a life.
The larger community
I’m thankful for the doctors and staff at Dana-Farber who’ve let me become a part of their family. I’m especially thankful for Jen, not only for walking away from her own Thanksgiving four years ago to spend an hour with us in the hospital, but also for the friendship she has gifted me with since.
…we lived in each other’s souls…
I give thanks for the larger NET cancer community that has taken me into its heart. You’ve listened to my pain and honored it. You’ve listened to my thoughts and plans, and not laughed me out of the building.
Progress on many fronts
I know the progress we have made has not been enough. But I also know where things stood six years ago as we struggled to find the answer to Jane’s carcinoid attacks. I stand thankful for what we know now that we did not know then. And I am deeply moved by every sacrifice made by every patient, caregiver, doctor, nurse, and researcher to purchase that knowledge.
You’ve listened to my pain…
I am equally thankful for the support groups–both physical and online–born in the days since Jane’s death. I would have killed for such a thing in 2010. The ones that existed, I could not find in those days–and even had I done so, there was no time that didn’t have Jane’s name on it.
Needs and wants
Personally, I owe a great debt to our many students who have reached out over these six years and made sure I had places to go and things to do. The simple gift of an hour’s conversation over coffee has proven more valuable than you will ever know. Your calls and invitations have so often come at the darkest moments in this struggle. I am deeply thankful for those things.
…I am deeply moved by every sacrifice…
I have a roof over my head, food to eat, clothing on my back, good work to do, and–most importantly–friends who care for me and look out for me. No man has need of greater gifts than these–for all that he might want more. Much has been taken–but much remains, and I am thankful for every crumb.
I remain thankful for all we built together–and that I have the strength and resources to continue to what we started.
(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.
