Category Archives: Caregiving

Dignity dies in a hospital bed

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People complain that Franklin and Jobs didn’t do enough to educate people while they were alive. If what they were going through looked anything like what Jane went through, I understand their reluctance completely.

Editor’s Note: If you are a NET cancer patient, you should not read what follows. It is filled with triggers that will not be good for you. If you are a lay-caregiver of a NET cancer patient, you should not read this for the same reason. If you are a widow or widower who has experienced the death of your other half as a result of NET cancer, you need not read this. You have already had the experience the piece describes and it will upset you, at best. It will have triggers in it you don’t need to deal with. I’m writing this piece for doctors and the general public, not for patients, lay-caregivers, or the bereaved.

I have seen Death in my life

I have seen death and suffering in my life. I spent part of my life as a police and fire reporter. I have arrived at fatal accident scenes moments behind–and once minutes ahead–of police and EMTs. I’ve walked into a burned out trailer with a fire marshal just after a fire was put out to find a charred body feet from the door. Those events were the stuff of my nightmares for years.

…much greater than anyone can imagine.

Then I sat the deathwatch with my wife and her sister as we watched my mother-in-law drown in the final throes of pulmonary fibrosis for three days and nights. That death was so ghastly her priest called it a martyr’s death. It drove the nightmares of my days as a journalist out and replaced them with new ones.

Nightmare diarrhea

Those nightmares lasted four years before being replaced with the images of my wife’s last days. Those images will never leave me. She did not drown, as her mother did. But what happened to her–and to me–was, somehow, far worse.

I have seen death and suffering in my life.

Aretha Franklin and Steve Jobs died from pancreatic NET. In some respects, it is a very different form of NET than the GI NET Jane dealt with. Their tumors were likely producing pancreatic hormones. Jane’s GI tumors were producing serotonin. The thing large quantities of some of them causes is food to be moved through the intestines very quickly, resulting in ongoing and massive diarrhea. I can’t be sure what happened in the case of Franklin and Jobs. I know what happened to Jane in too much detail.

What diarrhea does to dignity

Not having complete control over your bowels is worse than embarrassing in most human cultures. It reduces one, at times, to an infantile state. When that lack of control results not simply in a stinking stool in your underwear, but in diarrhea streaming down your legs and onto the floor, you feel worse than anyone can imagine. People can tell you it’s all right–that it’s your disease doing it–but that is the kind of thing that destroys your image of yourself.

…ongoing and massive diarrhea.

Many of us in the NET cancer community wish that Steve Jobs or Aretha Franklin had said something while they were alive about their disease. They could have done much to raise public awareness of the disease and how awful it is. They might have inspired more money for research that might have moved us closer to a cure. But they were proud people, living in a culture in a time and a place where we can only joke about what happens in a bathroom. It’s difficult to discuss, even with a doctor, being constipated. And diarrhea makes constipation look easy to talk about.

Simple human dignity

Jane was a proud woman. The night she went into the hospital for heart surgery to replace the valves her cancer had destroyed, they told her she had to go to the seventh floor of the building across the street. “I’m sorry,” she said to me, nearly in tears. “I can’t go that far. You’ll have to push me in a wheelchair.” She was visibly upset by that seemingly simple thing.

…they were proud people…

Jane hated the very idea of a wheelchair. We’d argued, sometimes loudly, about using one to get from one point to another in the hospital on earlier visits. It was an argument I’d decided I could not win. But I’d had to help her off the toilet at home that morning. I’d had to help her off the toilet in the Women’s Room at a rest stop on the way to the hospital. Her self-image and sense of dignity was in trouble long before the operation the next day set the stage for its absolute annihilation.

Diapers and dignity

Over the next four weeks, my wife became an infant. It destroyed us both. I replay those scenes over and over again in my mind. I look for things I might have done differently that might have made it better–might have left me with some small piece of a soul. There’s nothing there.

Jane hated the very idea of a wheelchair.

I diapered my first baby when I was six. I was the oldest of what would turn out to be six children. I put diapers on three of them–and helped by handing my mother diapers and powder on a fourth. I likely diapered the last one more often than my father did. Cleaning up an infant is often a stinky, messy job.

Changing Jane

Jane was my first adult. I knew she was having trouble. I came back from dinner one night to be told I should stay in the waiting area–that she’d had a bowel movement and her bedding and bedclothes needed to be changed. It took half-an-hour before they came to get me.

…my wife became an infant.

I don’t recall the exact details of what happened leading up to me helping change her. I just knew it was a two-person job and I wasn’t letting her lie in that mess one second longer than necessary. I told the nurse if he told me what to do, I’d help. He took me at my word.

A clinical description

I put on the gloves. I rolled her onto her side and held her there. The nurse did what he needed to do and I watched closely so I’d be able to do it myself if I needed to. I don’t remember the exact order of the process. He used the same kind of disposable cloth they use on babies to clean the diarrhea off her buttocks and legs. He rolled the sheets up close to her back. Then I lowered her back onto the bed. I walked to the other side of the bed, rolled her onto her other side. The sheets came off and he finished cleaning her up. Eventually, I lowered her back down on clean sheets in clean nightclothes.

Jane was my first adult.

I don’t know how many times I helped change her. She told me she was more comfortable when I was there to help. The nurses told me I got good at it–that they’d hire me. I like to think they weren’t just being nice. Even when they had someone immediately available, they let me stay in the room while they did it. It made Jane happy.

Breaking minds, destroying dignity

But it also broke her in ways that are hard to describe. She became emotionally more fragile and increasingly more child than wife. She became, for a time, completely paranoid–convinced the doctors and nurses were plotting something. She asked me to eat in the room rather than in the cafeteria so I could keep an eye on them. Periodically, I would drive back to Fall River to pick up clean clothes, cash a check, and pay the bills. She would be angry at me when I came back, even if I’d arranged for visits from friends and family for her while I was gone. Even if she were asleep much of the time. I’d left her alone for too long.

I put on the gloves.

And it broke me in ways that are hard to describe. You can’t help clean the shit from your other half’s body without it changing you. It deepens the relationship in unexpected ways at the same time it frays your soul. It felt like we were both creating these cool exteriors to hide the raw emotions that were coursing through us both. Even now, as I look at the description of changing her soiled sheets and gown, I see it so clinically–say it so clinically–knowing that to do otherwise would be to start crying and never be able to stop.

I live with it

It’s not that I don’t cry. I do–great hacking sobs that leave me drained emotionally and physically. In the midst of those episodes, I really do feel like the tears will never stop. And then they do–and I feel better for a time. Sometimes that time lasts for months–to the point I start to think maybe, at last, things will stay better.

She would be angry at me…

Then I come around a corner, catch something in my peripheral vision, wake up from a dream–sometimes a dream that has nothing to do with Jane or hospitals or mortuaries or cemeteries–sometimes for no reason at all–and it all rushes back in and I’m standing or sitting by that bed or rolling her on her side or looking out that hospital window…

Why we don’t talk about it

I understand why neither Aretha nor Steve talked about their NET cancer while they were alive. I watched what it did to Jane, year-by-year, month-by-month, week-by-week, day-by-day, hour-by-hour, minute-by-minute, second-by-second. They were all proud people who spent their lives in control–and who saw that control vanishing in the most embarrassing ways imaginable.

It’s not that I don’t cry.

And I understand why their families don’t want to talk about it now they are gone. To talk, even in vague terms, about what happened to the person they loved–and about what happened to them as they watched that person sliding into the abyss of diapers and a second childhood–comes at a heavy cost. It’s taken me nine years to put even this much down on paper and release it for public view.

Real courage, real dignity

Each of you reading this would do anything to protect those you love. Each of you would want to protect their image, even in death. We want the world to believe they died a brave, clean death filled with honor and strength and courage–and a kind of calm beauty.

I watched what it did to Jane…

Somehow, a bed soaked in diarrhea doesn’t create that image, for all that that reality makes what they endured so much greater than anyone can imagine. There may be little dignity in such a death, but it rehires far more courage more courage, far more patience.. And it is why NET patients and caregivers need more than sympathy or dignity–they need a cure.

Thoughts on Jane’s 65th birthday

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By the time of Jane’s heart surgery, her cancer had consumed much of her liver. The next step in her treatment would have been to address that issue. Today, doctors might go after the primary tumor instead.

The birthday that might have been

Jane would have turned 65 today. We would have done something special. I’d have written her a poem, given her presents and flowers and a couple of cards. We’d have gone to dinner someplace we both liked. Given the milestone 65 represents, perhaps we’d have spent the weekend on the lake or flown somewhere exotic.

…the moment Jane stopped breathing.

Instead, I took flowers to her grave. The weather is raw and blustery. I didn’t stay long. I could hear her in my mind telling me to get somewhere warm. I woke up in the dark this morning. I immediately missed her. That happens most mornings–but this morning was harder than usual. I lay there with tears in my eyes.

Jane’s last birthday

Her last living birthday we spent in the hospital together. She was two days out of surgery and improving rapidly. They wanted to move her to the step-down unit, but there was no bed available. Instead, they began the process where she was. They took her off oxygen and removed the remote monitors. They began weening her off the other drugs she was on.

Instead, I took flowers to her grave

We had talked about what I would do once she moved out of the ICU. I’d check out of my hotel room the next day and head home. I’d visit on the weekend and maybe once during the week. Jane didn’t want me driving back and forth to Boston every day after work. She needed to focus on healing–not worrying about me driving home. Her doctors agreed: I’d just be in the way. Jane joked she’d gotten a new heart for her birthday.

Harbingers of death

Everything shattered a bit after 7 p.m. The night nurse came on and started running vital signs. That’s standard procedure in the ICU–or anywhere else in a hospital. What she found, she didn’t like. And things went rapidly downhill from there.

She needed to focus on healing.

Jane’s pulse-oxygen level had dropped into the upper 80s. It’s supposed to be well into the 90s–anything below 90 marks a problem somewhere. We were up all night. They did scans and blood tests and could find nothing to explain what was going on.

Carcinoid birthday greetings

What was going on was the first of four carcinoid crises likely triggered by the physical therapy and the weening her off the octreotide drip that helped fight off carcinoid crises in operative post-operative NET cancer patients. No one realized it at the time. It was one of the things Jane taught her doctors. Unfortunately, they didn’t figure that out until she was in her final coma.

Everything shattered a bit after 4 p.m.

Jane never lost consciousness that night. I suspect that was another piece of the carcinoid crisis as insomnia is a symptom of high levels of serotonin. But I chalked up her wakefulness to what was going on around us.

When your best isn’t enough

I wonder now how much brain damage she sustained that night. She was still recovering from the anesthetics from the surgery and was a little loopy to begin with. I never saw her pulse-ox levels dip below 80. But she was never quite right after that night. Still, Jane was always hyper-sensitive to anesthesia, so I just don’t know.

Jane never lost consciousness that night.

I just don’t know too many things from that time period. I second-guess everything I did and said during that final month of her life. I console myself with the knowledge I did the best I could with what I knew and believed at the time. But there was too much suffering there for the final outcome.

The cost of knowledge

I was at a funeral this week. One of the readings was the story of Jesus raising Lazarus from the dead. I know that act made his family and friends happy. But we never hear from Lazarus. I wonder where he was and what that miracle took him away from.

I second-guess everything

And I wonder what additional suffering I inflicted on Jane by calling her back from the edge of death on two later occasions before we let her go home. Those things haunt me. I know the good that came of those decisions. I know what the doctors learned, know how the nurses felt about what they saw. I know how those extra days have shaped my life since–for both good and bad.

Happy birthday or sad birthday?

But I just don’t know if I did the right thing–don’t know how to balance any of it. I doubt I ever will. I’m struggling with a lot of things–trying to figure out what I’m doing, whether I’m making enough of a difference for the energy I’m putting into things, whether it’s time to do something else.

Those things haunt me.

Today is hard. It is always hard. I remember how happy we were for so much of the day–and how rapidly things fell apart as day turned to night. I feel enormous bitterness and enormous sadness. And then I tell myself how little of the good that has happened since exists without that day and the ones that followed.

That thought does not console me. People tell me it should. But they have no idea what I lost–and no idea what the world lost–the moment Jane stopped breathing.

The pain of NET Cancer Day

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People tell me my wife was beautiful. I certainly thought so. But the beauty of her mind and soul dwarfed her physical beauty. NET cancer could not touch those.

The Tenth of November

I never look forward to World NET Cancer Awareness Day. It reminds me of too many things. It is the day of the month on which Jane died, though she died in December and not November. But the tenth of every month tends to be difficult.

We need to kill NET cancer.

Still, November 10 is worse than all but December 10. It was the night before what would prove our last trip to Dana-Farber together–the last night that had any sanity in it at all. Not that there had been much sanity in our lives for more than a year.

The price of ignorance

The H1N1 virus had hit Jane particularly hard in October the year before. She’d missed a month of work between it and the pneumonia that followed. In truth, she never fully recovered from that.

…the last night that had any sanity…

I wonder how many years that flu cost us. Sometimes I think it opened the door that let the NET cancer she’d unknowingly been fighting for 30 years gain the upper hand. Other times, I think the NET likely weakened her enough to let the H1N1 really kneecap her. Probably both statements are true. Both things killed her, though the cancer was always going to be the root cause.

The face of NET

She was in tough shape on November 10. We both knew things were coming to a head. The thrice-daily octreotide injections were doing little to thwart the diarrhea, the bloating, or the swelling that had started in her legs that spring and had spread to her abdomen. She’d stopped trying to go up and down the stairs to the cellar. She’d stopped helping with the cleaning, though she did still manage to cook dinner much of the time.

…she never fully recovered…

She was a better cook than I was, so I cleaned up most nights. When I cooked, she cleaned. Now, it didn’t matter who cooked, I did the dishes. We’d always shared the yard work and the housework. She didn’t like that those tasks now all fell on me. She told me she felt guilty. I told her she’d do the same for me if I were the one fighting cancer.

Talk in the face of NET

We talked that night. She listed the things we needed to make sure we asked the next day. I added a couple of things. My official job was to make sure we came away with answers to everything, as wells taking the notes. My bigger job was staying supportive and positive no matter what we heard.

She told me she felt guilty.

We talked, too, that night about other things. We always did. We talked about our days, what we’d read, what our students were doing. The long drive to and from Boston sat on the table in front of us. It stayed quiet, as did the cancer once we’d finished with it. We both knew they were there.

Miracles needed

I can’t say what she felt that night. I know I was terrified. She’d lost too much weight, too much strength. She was dying and there was nothing I could do but hold her hand, massage her feet, and hope the long-odds approaches both we and her doctors had in mind would work. I put on a confident face. She did the same.

We both knew they were there.

We didn’t need a miracle–we needed several. It turned out we needed miracles we didn’t even know we needed–that the doctors didn’t even know we needed. It was November 2010–and what we knew about NET cancer with certainty could be reduced to a 3×5 index card. And some of that was wrong.

Long day’s journey into NET

The next day, the traffic was awful. But we came away hopeful. We met with a dietician who gave us some thoughts on things Jane might eat that would help. Jane’s doctor wanted to set up a procedure for the following week to draw out some of the fluid from Jane’s abdomen that would alleviate some discomfort and help get a handle on what was going on.

She was dying…

But when we got home–after three hours in traffic–I had to carry Jane up the stairs. It was the first time that happened. We chalked it up to each other as the end result of a long day and too much time sitting in traffic.

NET consequences

The next day, Jane’s heart surgeon called. A month before we’d talked about surgery “after the holidays.” Now, after seeing the results from the day before and talking with Jane’s other doctors, he wanted to do it Monday or Thursday. We went with Monday. That meant driving to the hospital late Sunday afternoon

I had to carry Jane up the stairs.

I’m not sure Jane would have made it until Thursday now. Given the month that followed, I’m not sure she would not have been better off. She would have died at home in her own bed on her own terms. But we both wanted her to live–to have a fighting chance–to reach the goal she’d set the day she was diagnosed.

What it was worth

She had the surgery. Her heart was worse than they expected. With a lesser surgeon, she would have died on the table. The doctors learned a lot in the days that followed. The people around us learned a lot in those 25 days. I learned a lot in those 25 days.

…to have a fighting chance…

But it cost her more than I can say. And I have never been the same. The tenth of the month has come around 107 times since I caught her last breath on my lips.

The deepest wounds

I did not cry that night. I was too numb–too numb for a long time. And I have work to do. But the tenth of every month breaks open every wound and leaves me with tears and memories–memories of the end.

…it cost her more than I can say.

We need to kill NET cancer. It tears apart the soul of the patient who has it–tears apart the souls of those they love.

Thankful? Perhaps. Terrified? Absolutely

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I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.
I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.

Thankful for what is

I have much to be thankful for: I have cupboards stocked with food, I have a roof over my head—a heated home with comfortable chairs and a warm bed to sleep in. I have clothes to wear at every season of the year. I have friends who would walk to the Gates of Hell with me if I asked them to.

It’s painful to lose your wings…

Most importantly, I have my health. Yes, I have the aches and pains anyone my age experiences. Yes, I’m still recovering from the summer’s surgery. And yes, I’m still grieving the loss of my wife seven years after her death. But my mind still works and I can still walk a goodly distance at a pace that would leave many a younger person gasping at the roadside.

Thankful but pained

One night, when Jane was in the hospital and unconscious but still with weeks to live, I stood alone in the waiting area outside the ICU. I was looking out the window at the city beyond. But the city did not register. The cars in the streets below did not register.  My mind was in the room with Jane.

I have much to be thankful for…

I was always in the room with Jane. If I went to dinner in the cafeteria, my mind stayed with her. If I drove home to pick up clean clothes and pay the bills, my mind stayed with her. When the nurses sent me out to take an afternoon’s walk, my mind stayed with her. Truth be told, part of my mind has never left that room.

Memories and weights

I still see the early morning view of Binney Street from her window—the cancer patients pulling up to the door of the Dana-Farber clinic and walking in. I still see Jane sleeping in her bed, still see her not sleeping when the bouts of insomnia came on, still see the madness and anger in her eyes. But I still see the smiles, still feel her hand in mine, still feel the tears and the final brush of her lips as she died.

My mind was in the room with Jane.

But that night, standing alone, looking out over the city, the enormity of what I was doing came down on me like the world settling onto Atlas’s shoulders. I had two decades of conversations to rely on—and they were too slender to do more than be crushed beneath the knowledge that I really was at the point of the spear—and thoroughly alone. I had friends and doctors behind me, but the weight was mine—the decisions were mine.

Living with decisions and consequences

On good days, I know I made the best decisions I could, given the information I had to work with. On bad days, the guilt is overwhelming. Most days fall between those two extremes. I console myself that Jane’s death—like her life—made a difference in the lives of others.

…the decisions were mine.

Seven years ago today, Jane was in a coma. I talked with her doctor. I talked with a friend who had come up to visit. Jane had come through one coma already. Part of me said,”Enough. Let her go.” But there was hope, I believed, with the right approach and a bit of luck, that Jane’s desire to be the first person to beat NET cancer might yet be realized. I let them convince me the chance was good enough.

Thankful, but…

And for 13 days, it looked like the right decision. And then, suddenly, it wasn’t. If you’ve been in my position, you know what that feels like. If you haven’t, I hope you never do.

Jane was in a coma.

This is what it is to be a caregiver and lose the person you love at the end. You can have food, shelter, clothing and friends. You can know how thankful you should be for each of those things—and you are. You can have your health and know how valuable that is, and be thankful for that, as well.

The terror of the void

But there is this void you can’t fill—that you are afraid to even try to fill. At first, you give yourself altruistic reasons not to. “I would never want to put someone else through this,” you tell yourself. “I don’t want anyone to feel they have to live up to my image of the one I’ve lost—that they’d constantly be compared to an idealized memory.”

You can know how thankful you should be…

The truth is, you’re terrified. You don’t want to go through watching someone else you love that much die again. You don’t want to hurt like this again. You don’t want the responsibility or the guilt or the pain. You come to prefer the real pain of solitude to the potential pain of that level of loss.

The end of the world

The Mulla Nasrudin, a Sufi teaching master, put it best when he said there are two ends of the world. “The lesser end of the world is when I die. The greater end of the world is when my wife dies.” Truly, the death of one’s other half truly is the end of the world. I’ve experienced nothing more painful.

But there is this void you can’t fill…

Truth be told, I’ve had momentary crushes—feelings I’ve squashed nearly as quickly as they appeared. When I have thought women have shown potential romantic interest in me, I’ve been quick to drive those interests away–or into safer channels. I’ve never been particularly quick at picking those things up, so perhaps those moments were imaginary. But I’m terrified to think any of it might be real—and both my conscious and subconscious minds have proven quick to put a stop to any potential relationship beyond friendship. Even that, sometimes, frightens them.

Of wings and hearts

It’s not that I can’t imagine falling in love again. I hear Jane’s voice in my ear constantly, reminding me that part of that final Saturday conversation before she went into the hospital was about her desire for me to find someone else if she died—to fall in love again. But my wings were singed long before I met Jane. She healed them, made them strong again. But her death charred them back to cinders.

Even that, sometimes, frightens them.

It’s painful to lose your wings that way. It hurts like Hell to have half your heart carved out of you without benefit of anesthesia. That’s what grief is like when the love is strong enough. But I can’t live with half a heart—don’t want to live without my wings. Still, I remain terrified of what happens if they fully recover. And equally terrified of what happens if they don’t.

Seven years’ mourning drawing to an end

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Seven years marks the formal period for mourning the death of a spouse. I know my grief will not end when that time has elapsed. But it will free a part of my soul.
Seven years marks the formal period for mourning the death of a spouse. I know my grief will not end when that time has elapsed. But it will free a part of my soul.

The mystery of seven

I don’t measure time in decades. I measure it in sevens–in combinations of threes and fours. In number symbolism, three is the archetypal number of the eternal female, four the archetypal number of the eternal male. Their simplest combination yields seven, the archetypal number of creation. My world fills itself with three and fours, but most especially, sevens.

I can’t say when I heard the body replaces every cell in it over a seven-year period. I know the idea made sense to me–and in a symbolic sense, still does. The truth is more complicated than that–as it is with most things. Some cells live a few days. Others can live a decade or more. But symbols are powerful things. They can rule our hearts even when science speaks otherwise.

Memories and dates

I’m living the seventh year since Jane’s death. In a few days, I’ll face her seventh birthday since her death. She would have been 63. Next week marks my seventh Thanksgiving without her. In less than a month, the seventh anniversary of her last coma–and her death–will haunt my thoughts and feelings.

The cells of my lips that caught her final kiss vanished years ago–as have the cells in my lungs that held that final breath. But I can still feel that final brush, that final breath. I can’t hear her voice, but those tactile moments remain.  I can see her walking down the aisle on our wedding day, feel her hand in mine. But equally burned in my memory are that last birthday, that final Thanksgiving, and that hopeless Friday morning and evening of the day she died.

Time of formal grief

The ancients set the formal period of mourning for a spouse at seven years. That hour draws close and I am anxious for it to arrive. I wait anxiously for the time to end, anxious for some small taste of an end to the emotional turmoil of these seven years.

And I am fearful. Grief has defined so much of me the last seven years. What defines me when the formal time of grief ends? Who–or what–have I become inside this chrysalis? A butterfly? A moth? Something else? Or are the seven years of mourning another illusion, like the Year of Firsts? I’m not sure how I deal with that.

Breaking the chrysalis

I know the end of seven years will free a part of my soul–a part of my mind. I know this because I have felt that freedom building inside me all year-long. The waves of grief come less often, the torrents hit less often and with less force–though this weekend was difficult in ways I have not experienced in a while. In September, the last renewal of our vows–an every seven-year event–expired.

But I am not sure this is a freedom I want. It means seeking a new definition of who I am–a definition that includes Jane’s death and the grief that followed and all I’ve learned in that journey–but goes beyond that. What present can I build? What future? Can I still create the visions I hold in my mind?

Dreaming dreams

Like Ulysses before his last voyage, I am not what I once was–or who I once was. My body has grown old–too old, perhaps–to carry forward the things that I conceive. I want an end to NET cancer. But I also want a world where life has meaning and possibility beyond a cure for one disease.

Jane and I dreamed dreams of things we knew we would not see except, perhaps, from a mountaintop across an ocean to a far-distant shore. Those dreams evolved from love–and we knew they could yet be. But no dream comes true from the dreaming and so we set our shoulders to the boulders in the path before us. Many told us we were crazy–that we gave too much and that we expected too much.

Moving boulders

Jane did not quit. Even in her dying she tried to teach–me as well as her students–and every person she encountered. She died a death that changed the lives of doctors, nurses, nurses aids, and technicians. She changed the lives of patients who never met her and never heard her name. Even I was changed by the way she lived her death.

My Penelope is gone. But love remains. Ideals and dreams and goals remain. And the work of those myriad connected dreams remains unfinished. They may die with me, but I will keep shifting those boulders aside, nonetheless. And, perhaps, when I am gone, some other souls will take up the stones Jane and I leave behind unfinished. Perhaps not. But the boulders we moved will be moved.

I hate one day in every month

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I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.
I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.

Days that hurt

I hate the tenth day of the month–any month. But I especially hate November 10 and December 10. I hate the fact November 10 is Worldwide NET Cancer Awareness Day. I don’t want to, but it falls on the tenth of the month and that day has a double sacredness to me in November.

…I love the possibility NET Cancer Day helps create.

Today is the monthly anniversary of Jane’ death. It also marks the seventh anniversary of the last even remotely normal day of my life. Worse, this year, it stands one month away from the seven-year anniversary of Jane’s death for a man whose life runs in sevens, not decades.

The last sane day

Seven years ago today, Jane and I went to bed early. The next morning, we faced the difficult rush-hour drive into Boston to Dana-Farber. We’d see Jen Chan, Jane’s oncologist, get another round of blood tests, wait for the monthly Sandostatin shot to thaw out, get that injection done, see a dietician. It was supposed to be a routine day. It wasn’t.

…that day has a double sacredness to me…

There was trouble with the blood draw because they couldn’t find a vein that would work. Jen was concerned about the build-up of fluids in the abdomen. The meeting with the dietician went well, but then we discovered Jane was leaking a clear fluid from the injection site. When we got home, for the first time, I had to carry Jane up the stairs. That had never happened before.

The beginning of the end

The next morning, Jane’s heart surgeon called. He wanted to move the surgery to replace the valves in the right side of her heart to Monday. They’d been damaged by the cancer. We’d planned to do that surgery after the holidays. Now…

It was supposed to be a routine day.

Saturday, we had that long conversation everyone needs to have. We did it once a year in January. This was an extra one–a more difficult one–the real one no one really wants to have. But we both stayed optimistic. This was a precaution–not a good-bye.

Sudden decline

Sunday, I had to help her off the toilet. That had never happened before. We arrived at Brigham and Women’s Hospital that afternoon. She didn’t have it in her to walk to admitting. I pushed her wheelchair to the desk on her floor and to her room. I can’t describe how that felt–how it feels, even now. She had always refused a wheelchair before.

But we both stayed optimistic.

Monday, they took her into surgery about noon. Part of me wishes she’d died on the table. She could have. The heart was more damaged than they expected. The brilliance of her surgeon saved her. But six hours of surgery became 11. I got to see her after midnight–unconscious and with tubes and wires flowing everywhere.

Aftermath

I loved her and I fought for her. And then I let her die. I planned the funeral she refused to believe she’d need. I buried her and settled her affairs. I stayed strong for her family and our students. Two months later, I started to cry. I haven’t really stopped since.

Sunday, I had to help her off the toilet.

But everyone else had moved on. They thought I had, too. No one saw the tears. No one saw me walk into the grocery store and start shaking. No one saw me walk out the door. I worked as I always had–though not as efficiently. I wandered the house aimlessly. I didn’t sleep. But slowly, I learned to cope, if not to heal.

Seven years in solitary

I understand solitary confinement. Every widow and widower does. You go from constant human contact to almost none in an instant. You join support groups, have coffee and meals with friends and children. But at the end of the day, you come home to an empty house filled with silence and memory. For all that you fill your life with other people and other things, a part of you no longer exists.

No one saw the tears.

Something has changed in you and you can never go back. You can only live with it and keep moving forward. So you change grocery stores, go to different restaurants. You paint rooms and redecorate. Sometimes, you move. You find work that has meaning for you. You cope–but sometimes–even years later–you just cry for no better reason than it hurts too much not to.

A day of hate–a day of love

November 10 marks the last sane day of my life. It marks, too, the last day I could–if even for a minute–pretend  NET cancer wouldn’t prove the end of our life together. I wish NET Cancer Day fell on any other day of the year–and I’m glad that it doesn’t. In a very real sense, for me, it falls on the perfect day–a day of remembrance that lets me fight back.

…a part of you no longer exists.

I hate that other people face what Jane faced. I hate that we don’t have a cure. And I hate the idea that too many other spouses face the same solitary life I live if nothing changes. But I love the possibility NET Cancer Day helps create. It helps me deal with the second worst day in my year.

 

Chemistry between patient and doctor matters

awareness, Caregiving, Jane, NET Cancer Awareness Day/Month

Jane taught chemistry, physics and biology at the end off her career. Seeing the meeting of Jane and Jen was watching a confluence of all three disciplines in a single second.
Jane taught chemistry, physics and biology at the end of her career. Seeing the meeting of Jane and Jen was watching a confluence of all three disciplines in a single second.

Matters of taste

My friend John and I had very different taste in doctors. Two years before I met my dermatologist, John had an appointment with him. After the appointment, John called him a cold fish with no personality. He knew his stuff, he said, but there was no chemistry between them.

It took Jane three tries…

My primary care doctor sent me to see the same dermatologist for a spot on my face. I went to that appointment with an open mind–knowing John and I were different people. The doctor and I hit it off immediately. We’d both been serious runners in our youth and still ran recreationally. Our appointments always end with us catching up a little.

Individual judgements

Jane went into the hospital for a blood clot that may have been related to her cancer the same day we learned about her NET cancer. An oncologist met with us while she was there. When he left, Jane’s reaction was, “Not him.” The man was as knowledgeable about NET as most oncologists were at the time–which is to say he didn’t know very much beyond what he’d read. But Jane found his tone offensive and his manner abrasive. I’ve since known other patients who liked him just fine.

The doctor and I hit it off immediately.

A week later, we met with another oncologist from the same office. She, too, had very little knowledge of NET cancer beyond what she’d read. But she and Jane hit it off well. She referred us to Dana-Farber for a consult that turned into Jane being treated there. But if that hadn’t happened, Jane really liked that second local doctor a great deal. The chemistry worked.

Powerful chemistry

Matt Kulke, the head of the NET cancer program at DFCI, was out of the country at the time. We went to see Jen Chan instead. I watched two long-lost sisters meeting for the first time when Jen walked through the door. That encounter was a confluence of chemistry, biology, and physics in a single second.

The chemistry worked.

I’ve heard wonderful things about Matt as a doctor and a person from his patients over the years. I’ve worked with him on committees, gone on walks with him, had dinner with him. I’d take him as my doctor in a heartbeat–as I would Jen. But given the instantaneous chemistry between them, for Jane, Jen was the better choice.

Why the relationship matters

Especially with a disease like NET cancer, having a knowledgeable doctor is not really enough. The personal relationship matters. Patients need a doctor they are comfortable talking with about diarrhea episodes and other uncomfortably intimate matters. Sometimes, the only way a doctor can know what is really going on with a patient comes out of those kinds of conversations. It informs treatment just as much as knowledge of the treatments does.

…a confluence of chemistry, biology, and physics in a single second.

But the chemistry that exists between any particular doctor and any particular patient does not provide an indicator  of the chemistry between that doctor and any other patient. Nor does it help describe the chemistry between that patient and some other doctor. Each case is different. The doctor I like, you may hate; and the doctor I can’t stand, you may love.

Each relationship is different

I’ve met a significant number of NET cancer specialists over the last seven years. Some, I’ve immediately hit it off with. Others, not so much. But they’ve all had two things in common. First, they all were really knowledgeable about NET cancer, though all have more expertise in some forms of the disease than they do in others.  Second, they all have patients who love and respect them who say they have the best doctor they could ask for.

The personal relationship matters.

And they do. Knowledge matters. So does being comfortable with your doctor. But just because a particular doctor is right for you, doesn’t mean that doctor is perfect for everyone. And just because you don’t get along well with a particular doctor, doesn’t mean they are wrong for everyone else.

Are you comfortable?

It took me four tries to find the right cardiologist for me. I like him so much, I made him my primary care doctor, as well. Those other doctors were just as knowledgeable, but I never felt quite comfortable talking to them. I have friends who like them fine. It took Jane three tries to find the perfect oncologist for her. The others were fine doctors, just not the right people for Jane.

…they have the best doctor they could ask for.

Like the elements in the Periodic Table, we are all different–and we all react to each other in very different ways. We all need to keep that in mind while we search for the right doctor for us–as well as after we’ve found them.

Remember the day where the pain resides

awareness, Caregiving, Death, Grief, Jane

I remember to forget forgetting

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.
I remember Jane’s love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.

Day to reflect on more than death

awareness, Caregiving, Death, Grief

A lost day

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.
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.

Self-care for caregivers–Advice Part 6

awareness, Caregiving

Why self-care matters

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.
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.