The Hardest Words I Ever Had to Say

 
How do I even start to cover my biggest topic — the one which has covered me for so long? The subject of dozens of blog posts already: the relationship my late husband and I shared with Death. Cancer was the horse it rode in on, but cancer was easy. You can fight fight fight! There is research! There are communities. It’s engrossing, engaging, and encouraging. I can’t tell you anything about that that you haven’t already heard.

What I can tell you is, the most important thing I ever told my husband. After, of course, I love you. 

Gavin spent his four last days in hospice. He had been living with a terminal diagnosis nearly two years; he’d survived two brutal surgeries, including one which failed, and five (I have to write them down to be sure) drug therapies: injections, infusions, pills, pills, and more pills. The last two were the two latest possible, delivered in his last six months, at the cutting edge of treatments and not even on the market yet. (We were familiar with the code names for all the investigational drugs in all the pipelines). And he was getting an increasing number of what are humanely called “opportunistic infections” but would be called demons in earlier days: shingles. Candida. Pneumonia. An unspecified bacterial infection. An unknown fungal infection.

To paraphrase D00ce, that all sucked, and we had a kid in diapers at the time.

We never went to bed angry, but we had a lot of really bad days. Every day we said “I love you.” That was easy and it was important.

But the third day in hospice they told me: You have to tell him he can leave if he needs to.

Did I tell him? I don’t remember. I regarded it as a duty to tell the quiet parade of his closest and oldest friends visiting: Before you go in there, I'm going to ask you to do me a favor: please tell him you’ll take care of me and my daughter. Please tell him he can leave if he needs to.

Those were the hardest words I ever had to say. I said them over and over. It was almost as if I was hearing it, too… the repetition helped. We’d entered hospice saying “this is to rebuild your strength.” I hoped he’d recover enough that they’d let me take him home and I’d have lots of help and he could die, surrounded by his adoring family, in a bed in our living room. You know, a month or three later. After his birthday party, after fair goodbyes, after making peace and in a state of blissful acceptance.

Instead he died two days later, in a bed in that same hospice, surrounded by his adoring family and a few friends and a miniature schnauzer-dachsund mix.

“The end” had been so far away for so long…. We danced with it. I asked a close girlfriend if it seemed, when she visited during a very, very bad period, that we were ignoring death, like an elephant in the room. She said, No, it was more like a kitten in the room, and every now and then one of you would lean over and pet it to pay some attention. You couldn’t ignore it, but you didn’t seem afraid, and it wasn’t that large.

But we had ignored it at times: we'd done everything. We’d shaken our fingers at death, looked it in the eye and screamed, we’d tested it, we’d tried to push it around. We’d made allies against death, and we’d bargained. Bargaining is pointless when you have no idea that May 31st will be the day you have to say, “it’s okay to leave if you want to.”

We never said goodbye. That was hard. Not that I felt it until later… there was no question he was “gone”… but it’s a romance that’s unavoidable, and it stung only as I hit everyone else’s expectations of what “the end” might be like, repeatedly, in the months and years following. But small stings, nothing like those we endured when we were losing our fight against cancer.

When you’re still fighting, you want to know the names of that bacteria and that fungus. When the doctors tell you it doesn’t matter, you begin to hear it: this is the end.

Don’t get me wrong… this is not about Elizabeth Kubler Ross and the Five Stages of Dying (not "of Grief"… but that’s another post).

But I wish we’d accepted that death wasn’t a kitten any more. I wish we’d let hospice in sooner. We thought we would… when it was “time.” We had talked about hospice, earlier in his illness. We loved the idea of a “good death.” But doesn’t everyone just want to live just so, so much more? But the closer that “time” got, the deafer we became to its knocking. Who could live with that sound? We turned the Baby Einstein videos up louder. We stopped asking Dr. Google about symptoms. We got mad at the oncologist.

Now that I have met hundreds of people widowed after long illnesses, I see that the elements of my story are ridiculously common. Pretty much every single one except the exact details, the dates, the drug names. But the deep ones: the hard ones, the emotional scars and fights and invisible enemies. The damage done, not by not knowing (because there’s nothing we can do about that except yell at God and doctors), but by not talking and not accepting the oncoming end.

Cancer may be a battle, but life is not. Life is to be lived and for love, and that is hard to really embrace during wartime. By the time he died, it wasn’t cancer any more. It was pneumonia and our unnamed bacterial and fungal enemies, and organs breaking down, one by one. At any rate, our oncologist had signed off long before: that’s a sign.

That’s what I hear when I hear about fighting cancer on the internet. That’s what I flash back to when I know a cancer blogger gets an opportunistic infection. That’s what it was like, and I can remember the detail and the complexity, the numbness and intensity intermingled, when one of my closest friends tells me that her close friend’s family won’t talk about what’s next when her lungs are filling up with fluid. Not quite triggers… memories of deep and dark times, and I feel huge lightness after finally sharing my side of my part of the story.

That’s how much is still in my brain and body and heart seven years after diagnosis, five years after his death. And oh, how I wish I could change it for every single person reading this.

Junk mail for the dead, or, YOU CANNOT BE TURNED DOWN!

Sometimes a piece of junk mail can really make your day. Widowed people are pretty used to receiving mail, email, and phone calls for their late spouses. At first, these situations can hurt, and be another occasion to "break the news" yet again… but as time goes on, the picture gets a little funnier: the dumbest marketers are the last to catch on. And once in a while, it's downright HILARIOUS.

Like the other day, when my late husband received a bulky envelope from United of Omaha Life Insurance Company. On the envelope there was no question who was being addressed — or what they wanted from him:
"Here's that second chance you hoped for, Gavin O'Shaunnessy!"

I open it up to find a direct and engaging, yet serious letter. There are lots of small official looking bits of paper, some that look like certificates, an easy card to fill out, and oh my — a prepaid business reply envelope. As a widow, I can really use that 44 cents somewhere else. It's just so hard not to talk back to this solicitation, which often puts words into my mouth, like: 

"Why didn't I get more life insurance when I was younger?…. "

Or maybe when I was alive?

"… And when it was cheaper?"

Well, um, gee, err… it probably won't get any cheaper than THIS.

"Now you've got the opportunity to get up to $10,000.00 graded benefit whole life insurance protection at an affordable cost… Your acceptance is guaranteed and your application is pre-approved."

Should I laugh or cry? When he was diagnosed with cancer, I would have killed for some life insurance -- he had just a tiny bit, because he'd lived with a heart valve defect and was self-employed. We couldn't find any that he qualified for. We kept our eyes peeled for envelopes like this. Too bad this offer arrived more than four years after he died. So, you know, I'm skeptical when the letter intones, in green gothic type,

"You can't be turned down."

RILLY? I say. Wannabet?

So I strongly considered filling the policy out. After all, as the letter states, "this insurance does not require a medical examination." And they make it so easy… that envelope was really (I had no IDEA) an IMMEDIATE ACTION ENVELOPE. The application was a big piece of paper, legal sized, two colors, but I only needed to fill out a few fields, and read the attached Post-it with Gavin's special preapproved authorization number: 519 858 890.

The forms were peppered with grown-up (if not senior-citizen) phrases like "beneficiary," "estate," "protection," "cash value," and an assurance that he'd be protected till age 121. (Suicide, of course, was excluded.) One table contained the word "GUARANTEED!" nine times in a row.

The whole package just left me feeling… I don't know. Confident. Comforted. Covered. Except for the fact, of course, that it was addressed to someone who couldn't, um, read.

Such a simple offer, a no brainer, with practically no effort required: payments could be made via "Easy Pay Option." I mean, even a dead guy could fill this out, right?

I laughed for a day solid, and so did my new husband, and I wondered if it would be even more fun if I applied, filed a claim, and had the requisite phone calls: this time, finally, with me at an advantage. Aren't they asking for it?

I mean, this is a company that bought a very very cheap mailing list. How careful could they be? They might even pay!

Then I realized that they would probably, at some point in the process, and possibly before issuing my check, ask for a death certificate. They'd probably notice that he was dead before the postmark date on my reply OR their offer.

It would probably be fun, but even United of Omaha was probably not dumb enough to fall for it.

And you know what? I've got better things to do with my time.

But it's hard to get this good a laugh out of a mailbox these days.

Elizabeth Edwards (3): Dying at home

Elizabeth Edwards was sent home to die, and I felt pins of jealousy pricking into me. My husband died of cancer after two years of fight: you might expect I'd hear echoes of the last days and of the loss. But no. The hurts were petty, many, and sharp.

Because Gavin couldn't die at home, the way he would have wanted. And it was because of me.

And because of those nurses in the ICU, loving and kind to me and my little girl, who wasn't supposed to be allowed in, but they saw how his numbers jumped when she entered his windowed area of the ward. How his face would light up, so it was worth breaking any rule, despite the risks to her and him and me. After all, it was a temporary transgression: no one stays in that ward long.

Adela, my favorite, the head nurse ("Adele" had been in the top 10 names for our daughter), was the one to really work on me. "You say he doesn't want to die in a hospital. You need to work on getting his discharge as soon as you can." (Discharge was tricky because our oncologist didn't have privileges there; she couldn't reach anyone she knew, because it was a holiday weekend: Memorial day.)

I'd always heard that inpatient hospice was hard to get into. "We'd really prefer to take him home for these last few months," I said hopefully, not knowing they were thinking weeks (it turned out to be just days). Adela danced delicately around it, but within hours another staffer was more direct: "You can't handle having him at home."

But I'll have help. We have wonderful friends. 
Won't hospice offer volunteers? 
Look what we've been through already. 
I can do what's needed. I can do what's right.

He died 4 and a half years ago and now I accept what they were saying: I couldn't have handled it. With a small child, his senile mother, and insurance paying for nearly nothing… the brutal truth was I could not have changed his diapers in addition to my toddler's. It stung to hear it then, and still to say it, but: I hated being a caregiver, even to someone I loved who I desperately wanted to live. And it would have been more dangerous.

But deadliest of all was to stay in the ICU. They really wanted us out of there. And he knew they were treating him differently, that they'd given up. Instead of being the most-well person there, I think my husband picked up on the fact that he was starting to fit in. "The ICU is not a place for extended dramatic intervention. People just don't last here. It's for emergencies. When there's nothing more to do… well, it's not a good place to spend your last hours."

I just thought maybe they could make an exception and allow more visiting hours. It wasn't a bad place… look how attentive they were to me. What came across as care for me was really their strong desire to persuade me to save what was left of my self and family by getting him into hospice.

To Gavin, the ICU was a neglectful lonely place. His veil was starting to lift: he saw what was really happening. I am sure he was willing to go to hospice before I was willing to sign the papers. I said it was just so he could recover some strength, and I could have some respite, and then we'd bring him home. The timeline was rather Hallmark: months of adjustment, designed by my mind for my own emotional convenience.

None of us had any control over the timing, of course, not even Adela. All the staff, the hospice experts, everyone was off by weeks. He died four days after transfer. He'd been fighting that hard all along and he took the rest he was offered.

I was a zombie with a job: I told visitors to "please tell him that you'll take good care of me and Short Stack and Frances, and that it's okay to leave if he needs to." I was choking, and I was also saying, "it's good for him to hear that, you know, just in case."

My chief regret, my advocacy, is that we didn't start hospice sooner. We could have recognized that this disease in this man at this time was just too powerful. I know that living with denial is actually a good idea when you're faced with a terminal illness, but regrets have nagged me all this time. I like to blame Gavin and the endless positive fight at all costs, but a lot of the resistance must have been coming from me. I pulled over on the parkway to cry in angry helplessness on the way over to that appointment. In the end, I signed the papers out of sheer duty.

I was frustrated that everyone thought — knew — I couldn't have handled him at home. Finally, now, I accept that they were right. I give myself permission — that old me, the one who hadn't seen anyone die — to be an imperfect caregiver. I know my family is better off because Adela got through to me.

I was envious that Elizabeth Edwards had the chance to go home to be with family when my husband didn't.

But death laughs at all our petty jealousy: before I had the chance to write a blog post (never mind three!) she was gone. A woman who'd advocated for hospice didn't get much time to enjoy her loved ones outside the hospital. Her courage, her honesty, earned even her just the barest bit of peace.

We all deserve more than that moment.

Obligatory Post Titled "Hey Jealousy"

(Let’s just get all this out of the way.) I’m jealous of widows who had life insurance, or whose husbands had good jobs with automatic coverage despite preexisting conditions. I’m jealous of those who got to be married longer. I’m jealous of those whose marriages were the most happy they’d ever been. I’m jealous of those who were still falling in love when their partners died.

I’m jealous of anyone who has more than one kid. I’m jealous of parents who didn’t have to pay thousands of dollars to get pregnant. I’m jealous of Moms who have time to work out. I’m jealous of women with good skin and no back fat.

I’m jealous of folks with real careers and who have found the answer to their life’s meaning and the world’s need early in their lives. I’m jealous of folks who are happy just doing their job, or who have pushed through to have real power at my age. I’m jealous of many people who made different choices than I did.

I’m jealous of celebrities with book contracts, and I’m jealous of stupid products that make a lot of money (like Katy Perry and the Baby Einstein videos).

I’m jealous of people with wonderfully supportive extended families that are not neurotic or abusive, and those with independent income. I’m jealous of people who live in inarguably gorgeous places like San Diego.

I’m not jealous of widowed people who “had a chance to say goodbye,” even though hearing this prickles me, because based on living side by side with a dying husband for two years, I think it very rarely happens and I don’t begrudge the few people who may have had this fulfillment.

I’m only a little jealous of those who have faith, the universe holds many ambiguities I can live with, since I believe they are true. I’m not someone who needs answers. I am, however, jealous of people who believe in affirmations and Louise Hay. I crave seeking and process but prefer it when it’s accompanied by genuine original insight. Talk about asking for the world!

I’m a little jealous of people who have good digital SLRs.

I’m not jealous of anyone’s problems, I believe the old adage that if we all put our problems into a giant hat, we’d each take back our own. With pleasure. That’s probably why I hold onto mine so hard.

I’m not jealous of people who’ve had really easy lives, because I think they are often bored and boring. But I am jealous if they seem to be satisfied with that all.

I’m not jealous of anyone’s sense of humor, mine is as good as it’s going to get.
I’m not jealous of anyone’s education or innate smarts.
I’m not jealous of anyone’s kid, mine is perfect.
I’m not jealous of anyone’s creativity, mine exceeds almost anyone’s.
I’m not jealous of anyone’s garden, mine is growing.

I'm not jealous of anyone's entire life, or of this moment, anywhere, anyhow. 


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Somatic Identification, Part 2

What is somatic identification? For me, in widowhood, it describes situations when I’ve seen my body imitate his, even though he is no longer here. It’s a little like sympathetic pain. Since he's no longer in this world, maybe it's more like a phantom limb: I want to keep caring for him even though he doesn't need it?

Usually it feels more like my own reluctance to move forward -- my desire to stay back in the world of the ill, to understand where how he felt when he knew he was leaving.

First I had the typical grief symptoms that manifest in the body: fatigue and depression and needing more extra sleep, combined with insomnia. I’m going to guess that these don’t really count as a sympathetic response, even though they mirror what his body went through to some extent, because grief is, itself, very physical. It isn’t well understood, but it is typical.

The somatic identification that affects me has happened late in my grief: as most other factors in my life are fairly resolved, no longer raw, and stable, I am a peculiar hypochrondriac. This area of my body’s response to loss is part of my own complicated grief – and I am pretty sure that in order to progress I have to get past it.

Here’s the form it’s taken in my life as a widow. First, of course our life with cancer (and with several issues before that) was what I called “highly medicalized.” So after he died I avoided doctors. All appointments were made late, many were broken and rescheduled multiple times. (I was much better but not perfect with my daughter’s health.)

Second, Gavin had a heart problem when we met, lived through open heart surgery early in our relationship, and had an arrhythmia and pacemaker for the last 12 years of his life.

When I finally got to the doctor for a physical she saw an inverted “T” in my echocardiogram… an odd pattern that could indicate a heart defect or heart disease. In the overall picture of my health, and given the odds, it was unlikely to be something serious. It scared me, but not enough to do anything.

When she wrote the referral, I saw that it was to the practice that Gavin went to for his defibrillator checkups. They always liked him so much and told me so. The technician came to hospice to turn off the device on Gavin’s last day and stopped on the way in (or out?) to tell me how sorry he was and what a lovely man Gavin was.

My poor primary care doctor had to write that referral three times in three years before I actually went.

It wasn’t easy to go to the appointments there, but I had to go over and over because insurance kept not authorizing one of the tests. I suppose repetition and negative focus on Blue Cross helped the visits get easier, and I did bond with a lovely nurse who asked me, “you wrote that you’ve had exceptional stress in the past few years….?” I spilled and she revealed that she’d been widowed ten years prior with two young kids.

I suppose I turned it around by making this new connection (and I’m fixing her up with my friend’s brother, too). All the tests came out fine: no problemo.

Third, I got weird visual disturbances. The first one, I thought was just because I hated my job and it went away after 20 minutes. The second one might have been PMS. My eye doctor looked at me worried and said, you better ask your primary care about that.

The doctor hesitated, saying it was likely migraine “auras,” but those were unlikely to come on for the first time at my age. Her pen hovered over the referral as she considered the many unnecessary MRIs performed each year and how my insurance might treat it.

I told her I’d err on the side of caution because of my husband’s cancer. I might be hypervigilant but I couldn’t put aside the thought: BRAIN TUMOR. BRAIN TUMOR. Gavin had two tiny brain tumors discovered during his last week. Although they were asymptomatic, they were one of the few things that actually spoke to me of death: I had just heard of a paper showing that most patients with brain mets survive 30 days or less. It was a number to fixate on. Sometimes I wonder whether I should have told him the result of that scan that last week.

We turned down that treatment – whole brain radiation, even without knowing how late it really was. It’s famous for awful side effects and as it turned out, he was gone 4 days after they would have been able to “squeeze him in.”

With these traumas on hand you might think my vigilance would have been productive, that I would have had an impulse to preserve myself, but no. While I could ask the doctor for the referral and promise to take care of it, I couldn’t actually call or show up for at least two years (two referrals or three?).

The test, which was held at the imaging center where Gavin used to go for his scans, including the disastrous ones, and the ones that were misread, and the one where he threw up, went fine.

(I celebrated not having a brain tumor with my first-ever two-day migraine.)

Fourth was one -- thankfully -- panic attack. Gavin was plagued by dozens per day during the period of his worst/best therapy, the one which stole his breath and marked the worst paradoxes of our time in treatment.

Will my body become unstuck when I have the last tests and find out I really AM going to live?

Or is this my body's way of teaching me to have more empathy, more compassion? A way of putting myself in the way so I can be sure to forgive and heal myself? Our bodies know, in grief, and in this way, I finally hear that my body has been holding something back.

After Life: An Aberration

A day or so after the conversation described in my previous post, Gavin had transitioned to a state of moving in and out of sleep. Our friends were coming and going as surreal “guests” and the hospice staff was giving him a fair amount of whatever opiate was permitted. There were no IVs.

It would be another day before he was mostly asleep. Before I gave him a few sips of lychee ice cream from the special tropical place as I left for the night. One more day would be the last.

There weren’t that many days in the hospice, so these events must all have happened the same day, on Wednesday, May 31, 2006.

We had the conversation I recounted above, about burial plans.

He awoke when I was in the room, clutched his abdomen, and said, “Why does it have to hurt so damn much?” I ran for the nurse to up the drugs. He was asleep again before we got back.

He awoke abruptly when I was in the room and said accusingly, “So what’s it going to be. Are you going to burn me or bury me?” I’m not sure he could tell I was in the room.
“Honey, we just talked about this…” but he wasn’t all there. A moment later he was asleep.

I asked the social worker (the same one who would later commit offense #4) if I listen to what he said and respond, or whether it was delirium. She looked at his chart and said it was the drugs and I should be at ease.

Do you get to finish every conversation? No. Did we get pretty far? I counted myself lucky and moved on. At least from this one little bit.

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No Man Knows the Hour or the Day

Wouldn't you like to know when you'll die? When Gavin was ill, we talked to a multitude of experts about other things, trying to remain in control, without ever directly asking "how long does he have left." There's a certain vogue among "survivors" that says "knowing" tilts your mind toward conforming, toward proving the doctor right (or wrong) rather than just living as long as possible. We were committed that Gavin would "end up" in the upper tail of the survival curve.

A few people told us anyway, and you know, in this world, when you're smart, it's just not that easy to keep your eyes shut tight.

While we didn't take any of the estimates very seriously, we adjusted our minds and lives a dozen times during the 22 month ordeal. Looking back I compared what we expected, roughly, at each of many junction points, with what happened:

When my husband was first diagnosed with a terminal illness, we thought it would shave a few years off his life. (He had less than two years at that point).

Whenever we got into a car, I’d remind him he was statistically more likely to die today in a car accident than from the cancer. (Especially if I was driving.)

When we quit the first doctor, who told us he had a year or two without treatment, Gavin promised me he’d live to see our infant daughter graduate from college. I knew he was wrong. (That doctor’s estimate was right, even with treatments).

When the first treatment failed, we thought he might have another ten years (he had a little more than one year).

Gavin swore he’d be around to see our daughter kick a soccer ball around a big field.
I hoped he'd be right but also figured kids start playing soccer pretty young these days. A month or two later, like Sleeping Beauty’s wishful parents, I banned all balls from the house.

When the third treatment failed, we thought he had another few months (he had about one month left).

When he entered hospice, the experts told us he had a few weeks left (he had just four days).

Two days later, they thought he had a week or so left (he had just two days).

The next morning at 9:00 they thought he had a few hours (he lasted till 7:00 pm).

Is the lesson that the least sensitive doctor of them all -- the one we quit in rage and frustration -- was the best? I don't think so. I just think it's a fool's game to time the market or the reaper.

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Engage With Grace: Your End-of-Life Wishes

I'm participating with many other bloggers in a blog rally for Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes. At the heart of Engage With Grace are five questions, often shown as a single Powerpoint slide, designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

Engage with Grace targets a time of year when most of us are with the very people with whom we should be having these tough conversations -- our closest friends and family. To help ease us into these tough questions, and in the spirit of the season, this year's Engage With Grace conversation might open with five parallel questions that ARE pretty easy to answer:



Silly? Maybe. But it underscores how having a template like this -- just five questions in plain, simple language -- can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.




To learn more please go to www.engagewithgrace.org. This post is based on text written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here.

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Widows' Testimonials about Health Care

I’ve asked widows and widowers I know to share their experiences with the health care system in America. I thought we’d have unique perspective because many of us have had more experience than the average American with health care and end-of-life decisions.

The list below shows everyone who's participated so far, but please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).Here is the list of entries -- go ahead and add your post in the fields below.

More details and some questions and answers are in this post.

If you are interested in participating -- by sharing your experience with the U.S. Health care system or health insurance -- please write to me direct at supa.dupa.fresh AT gmail DOT com.

My Testimony: Reforming End-of-Life Care

I’ve asked widows and widowers I know to share their experiences with the health care system in America. I thought we’d have unique perspective because many of us have had more experience than the average American with health care and end-of-life decisions.

You can see the list of testimonials here and please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).

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As for my experience -- I have a lot to say about health care in America, and how the system as a whole has served and failed my family. My husband and I were informed and intensive users of medical services for routine care, to manage chronic conditions, and in his fight against cancer. After 40 years’ experience in what I had come to think was a very “medicalized” life, I feel I can make the biggest difference by testifying about my experience with end of life care.

However: if you are interested in more evidence against the thieves and liars of the private health insurance industry, and their captive government regulators, I’m happy to provide the evidence offline. Just wink.

I’ll also say that a public option is a must: we were fortunate to live in a state that provided a way into private insurance for self-employed people with preexisting conditions. Despite its limitations, we would have been much worse off without it.

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The real story here is about death. The inevitable. The universal. Americans don’t ignore it: it’s in the news every day, and gosh we just eat up those vampire books.

But here’s the rub: No one should receive a diagnosis of a stage IV cancer without entering into a conversation about their final wishes.

Yes, you can fight, and you must. Strap on your Bernie Siegel and visualize away. Get everything you can from conventional medicine and stimulate your immune system with herbs all you want. (Nor should anyone be set adrift in a sea of unbelievably expensive decisions. Choosing a path for treatment should not be like choosing an entrée. I wish we’d been assigned a patient navigator.)

But understand at the same time that we are all dying. Gavin and I had had experience already; we thought we were more aware than the average bear. Patients with terminal illnesses and their families lose sight only occasionally of the black wings hovering over our shoulders. We revel in the deliciousness of this day and in gratitude. But that doesn’t mean we’re really dealing with it. Denial is complicated, and honestly, not entirely a bad thing. It can be pretty useful if you have a life to live in the meantime, and don’t we all?

But once you get really sick -- particularly after a catastrophic diagnosis like ours (which can bring on symptoms of PTSD) -- you really won’t want to cope with your will, wishes about burial, or plans for those left behind. Thank God Gavin’s advance health care directive was already in place, because I don’t think we could have done it while he was sick.

Nothing stayed the same for more than a few months. One therapy seemed to push the disease back a bit. Recovering from surgery (Gavin had two big operations) is a hurdle that requires you to build up energy and fortitude. It’s satisfying to have concrete goals. It was easy for us to forget that every step was considered palliative care from day one.

Please don’t get so far into positive thinking and manifesting whatnots that you forget you’re mortal, like we all are. Yes, you might get a miracle; but have a plan B.

At parties, we used to say that Gavin was just dying a little faster than everyone else. When we’d get in the car I’d point out he was at more risk from the daily road risks than from the cancer (especially if I was driving. But that’s another story).

For a time, even on the downhill slope, my dying husband and I were able to adjust to each lesson or new fact or change. But the last six months were a decline of breakneck speed punctuated by the brightest rays of hope: two new drugs were approved.

It didn’t matter. The first miracle drug destroyed his quality of life with fatigue that he couldn’t tolerate, despite the fact that it was working. But it looked like he had a second primary. Then one titanium strut supporting his spine broke. Then, mouth sores. Weight loss. Planning more radiation. Candida. Edema. Shingles. BOOM BOOM BOOM BOOM. Whatever you do under these circumstances, you turn away from earth. We looked up, away from each other. And we got less and less able to talk about “next steps.” The wings were beating furiously, too close. Neither of us wanted to hurt the other.

I know his death would have been easier if we’d entered hospice sooner than 3 days before he died (even the experts didn’t think he’d go that fast). Maybe he could have been at home instead of spending most of the last 2 weeks in an ICU. We might have thought differently about the risks of that second, brutal surgery. I know that Gavin had interventions that were painful, destructive, and expensive – as well as pointless.

Studies have shown that patients have “better” deaths and families grieve differently if they have individual, realistic conversations about end of life care.

Yes, our medical team did the best they could reading our states of mind and the level of conflict -- with the end, with each other -- at each appointment for 22 months. I’m sure they intended to ease us into hospice. If only there hadn’t been so many twists and turns. Or maybe if we’d been more open.

It shouldn’t have been our choice. Maybe it sounds like “planning to die” to you but having this conversation is really the only way to balance your family needs, religious and ethical values, and the non-negotiable reality of biology.

I hope I’ve illustrated how often things can change: how mixed are death’s signals. You can’t really “plan” how it will work out, but if you have an existing relationship with a hospice counselor you can discuss how you’d like to approach different scenarios. An Advance Health Care Directive is just an outline, but it can provide a basis for making ongoing decisions that comforts you and your loved ones who really, I tell you, WILL be forced to make decisions that they will always have mixed feelings about UNLESS you contribute.

It sounds awful, doesn’t it? Having to think about “how” and “when” you might die, about radical interventions, telling your loved ones whether you want food, water, what. But I watched my husband die, and I want to say I’ll never be scared of any conversation again. Words don’t break flesh down to a wisp. Worrying about hurting Gavin’s feelings, or about jinxing his miracle, were inconsequential fleas of politesse next to the Big. Giant. Mortality.

Don’t wait until there’s no “undo.” It’s the process, the conversation, that matters. Perhaps after diagnosis is too late to begin the discussion. Maybe when we hit 50 we should all talk about death. Or 40. It certainly should be part of every pre cana. Maybe it could be included in a rite of passage, if our modern lives would allow such things:

“Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.” -- Pope Paul VI (1897-1978)


There are dozens of ways to get comfortable with your own mortality: Art, music, poetry. Psychotherapy, film, faith. Structure, freedom, study. (Bonus: you get to sound "deep" at parties.) But you have just one “today” to begin.

Above all, keep those you love close as long as humanly possible by sharing your thoughts on the end.

* * * Read more testimonials about health care by widows and widowers here * * *

* * * Comments * * *

Testify About Health Care: Let's Share Stories and Make a Difference * UPDATED *

A couple of us have been talking about doing something. Won't you join us?

WHO
Widows and widowers with blogs, Facebook pages, or other media.

WHAT
Please join us in creating a collection of individual testimonials about health care and health insurance in the U.S. You can be for or against specific policies but you must base your post on facts and not simply state your opinion. The goal is to provide real stories about the strengths and weaknesses of the health care “system.” Wear your “civic” and “civil” hats when you write: your testimony should aim to elevate discussion, not provoke.

WHEN
No deadline; project is ongoing.

WHERE
All over the Internet, starting here on Freshwidow.

WHY
I believe that many of us who’ve faced loss can offer unique perspectives on what works and what doesn’t in our health care system. By consolidating our responses, we hope to gain visibility and shed some light on the debate over reform.


HOW DO I PARTICIPATE?
1. Write your story. Please limit it to your actual experiences and be specific. Suggestions: Give background, assume the reader doesn’t regularly read your blog. Provide numbers to strengthen your case.
2. Write a headline that gives an idea of your specific perspective and topic.
3. Post your testimonial on your blog or in a note on Facebook. If you use a blog, please consider allowing comments on this post, even if you don’t normally do so. If you use Facebook, make sure people who aren't your friends can see your "notes."
4. Come to the Health Care Testimonials post and add the link to your specific post. There will be a "Simply Linked" form (like “Mr. Linky”) set up to make it easier. Put BOTH of these things under "link title": your name or your blog name (or both), your post title.
5. Go back to your blog and update your post to include the link to the Health Care Testimonials.
Here's the code to do that:

<a> href="http://freshwidow.blogspot.com/2009/10/testimonials-about-health-care-testing.html"> * * * Read more testimonials about health care by widows and widowers here * * *</a>

6. Tell everyone! Circulate the link to this post, include it in widgets on your blog, Tweet it, add to your Facebook status, etc.

UPDATE
Question: What if my story is boring? Like, we had insurance and everything was covered?
Answer:  Your story will STILL be of great value! A lot of people (I am thinking in Congress) don't understand much about real life medical situations, so the testimonial (with context) will help illustrate, in your case, how the system DOES work. For example, part of my story is that Gavin was self-employed and born with a heart problem, but he was covered by a state "high risk pool" program. Without that, he would have had no insurance for 30 years b/c his income was too high for Medicaid.

I'm firmly convinced that sharing our experiences can illuminate the boring details for many people, so keep those questions and ideas coming and JOIN US!


* * * Comments * * *