Tuesday, September 22, 2015

Update on Mr. Simply, and a bit of backstory -- plus another request

I wrote this e-mail last year about my husband, to his friends:
As most of you probably know by now, Mr. Simply did not come home today. He had a fever, was throwing up, and is confused, so. He held it together pretty well for a visit from Stanley, but trust me when I tell you, he's confused. Also, his pain still isn't well-controlled. He has a pain pump now. Maybe tomorrow.

It is heartening to him how y'all care about him, and your calls and visits have meant more than I can say. Hospice was an incredibly difficult decision to make and even after it was made, continued to be a struggle for him to accept. You know how they always say, 'you have no idea until you have been through it yourself'? I had no idea. No earthly idea.

Here's how we got here from there: As most of y'all may already know, Stage IV cancer is incurable by definition. But sometimes one can hold off the inevitable for a year or even longer, and he tried hard this summer to do just that. He was at an excellent treatment center -- his surgeon from last spring teaches doctors at other clinics around the nation how to do the kind of surgery Mr. Simply had, just for one example. And the study he was almost in is cutting edge, internationally.

We thought we had more time -- maybe even as much as two years more.

But it was already too late last year for a cure -- it was already in his circulatory system, which we suspected might be the case from the pathology report then. So when it came back, any treatment would be what they call "palliative," which is to say, it might help with symptoms and might buy him some extra time. At that point, his prognosis was approximately six months to live without treatment, nine or so with -- although there were a few folk in studies still living at 18 and 20 months, mets to the bone are a poor prognostic indicator, and he had those right from the beginning of his progression. He'd had a new biopsy and the results came back that he had a couple of mutations with studies going for them, but they were out of state and therefore completely unreachable for us. The trouble was also that most of the most important studies going on were for driver mutations he didn't have. And in any event, you always want to try the proven treatments before the unproven. Studies are a last resort, for obvious reasons.

Ergo, the chemo he got. This was the recommended "salvage" therapy for people who've had chemo before and had recurrences or progressions. And it failed. Spectacularly. Not only did it not slow the cancer down, it put him in the hospital and he experienced "extensive" spread of his cancer while he was in the treatment so that by this time, I guess around mid-summer, he now had mets to multiple ribs, his clavicle, his kidney, the one already on his liver and the ones on his spine were growing fast, a new one on his pelvis, and one on his skull.

Next they tried to get him in the cutting edge study going on right here, for which he also had the correct markers in his liver tumor biopsy, but he was already too sick. His pain was not under control (one of many requirements to enter most studies) and by the time they got that in order (temporarily, as it turned out) and tried to get him into the study a second time, his labs were abnormal (another requirement -- that all your labs be in range). He was going to make a last-ditch effort, starting a round of chemo last Thursday, to shrink the tumors and get the pain and labs back within parameters and attempt the study one more time, but he didn't make it to Thursday.

You have to be ambulatory for chemo, and besides it would have taken weeks for it to work, if it did at all (for this last one there was a less than 5% chance that it would even slow the progression, never mind reduce his tumor load) and he could not have stood the pain for that long. Nobody could. It was so bad that when the rescue crew knelt on the bed to check his vitals, the mattress movement alone made him scream.

As sick as he is, there is no study he will qualify for now. And there is absolutely no scientific support for any of the other stuff such as drinking vinegar, taking thousands of mg of Vitamin C, or even smoking dope, that has been suggested to us this summer. Everybody's professor who cured himself with C is an urban myth tracing back to Linus Pauling, a professor to be sure, but one who died of cancer while choking down bales of the stuff. And what dope will get you is arrested and your house and car seized. Besides which, in Georgia cancer patients can get the pills by Rx. So why take the risk? Nor do various and sundry Chinese herbs and Korean tree bark or anything else cure cancer. Some even trigger it. There have been some studies done on all of these things, and they are either coming up goose eggs or inconsistent.

Please believe me when I tell you that if there was a treatment out there that would work for him, or a study that would take him, he'd be in it.

His oncologist could no longer control his pain, but hospice can, and it gives him a shot at a peaceful, calm death at home, completely free of pain and surrounded by the people and pets he loves. Any further attempts at treatment will likely only make him sicker, weaken him further, and maybe even kill him sooner -- and in any event he could not possibly do it: By Tuesday, remember, he could no longer get out of bed. How would we get him there? How could he have possibly stood it? When I tell you he was screaming when he tried to get up, I am not exaggerating. He was in agony. They had to shoot him full of Fentanyl before they could move him, and he was still crying out.

Hospice has that pain down to next to nothing, and is the only route by which he could have gotten there.

His oncologist told us last week that he would likely live "less than three months". One week of that has already gone by. He can spend the last weeks of his life in agony, getting treatments that have a 19:1 chance of making him worse instead of better, traveling by ambulance (it takes a minimum of four agonizing transfers to go anywhere and come back, don't forget) [at $900 each way -Ed.] to consult quacks or at best new doctors who are not going to be any better than the ones he's got. . . or he can spend it at home, comfortable and in the loving embrace of you and me and the animals. Studies do show that people who go into hospice early not only have a better quality of life in their remaining days but also live slightly longer than people who continue to pursue aggressive treatment to the bitter end.

So the best gift we can give him now, as hard as it is going to be to let him go, is our acceptance of his death, our compassion, and our support.

To that end, I am begging you, please do not talk to him any more about trials, cures, miracles, or 'fighting'. When you do, you are implying that he, his doctors, and I have not already done everything we/they could, and I'm sure, knowing you all as I do, that that's not what you mean to say at all. I know you are all only trying to help, that you do have his best interests at heart, that you only love him and want to see him live.

He has already been brave and tough -- braver and tougher than you will ever know. He went through the pain of the surgery, and the sickness from the chemo (and the pain from the neulasta each time) and all the scans and the pain from the mets in his bones and and and. All without flinching or complaining or any sign of fear. He's fought his fight, and fought it far better than I ever would have had the shoe been on the other foot. Leave him be on that one, please: Stop implying to him that he's somehow giving up. He hasn't. He has been and continues to be, even in the face of death, the single most courageous person I have ever known.

Hospice is his miracle now, dying with grace and dignity is his battle. All he needs from you for this to happen is your loving support.

Thank you, from the bottom of my heart.


Friday, April 17, 2015

On Becoming an Old Crone

I never understood what was meant by the wisdom of our elders, I just took it for granted that they were. Wise, I mean. And I tried to listen to what they had to share, I really did. I tried to live mindfully. I wrote gratitude lists. But I never really understood.

Until now.

My handy-dandy on-line journal minder tells me that on this day three years ago I was suffering from disappointment. Mr. Simply and I were at my state professional association's annual conference in the mountains, which coincided with a photography club shoot that weekend. There was to be a meteor shower of epic proportion, and there was a mountain-top park nearby that would have made for perfect viewing.

Had it not rained, and the mountain been socked in by the fog.

I had rented a very nice prime lens and a primo tripod for the occasion, and was bemoaning the expense, given that I could use them for absolutely nothing else. 

My point?

I know now that none of that matters. We were in the mountains, for gods' sakes! The azaleas were in bloom. There were woods dripping wet and filled with bird song right outside the door to our room. We ate fabulous meals at a nearby roadhouse. Two of our friends were up there, too, for the weekend.

We were alive!

That's all that matters.

His bird likes to ask, "What? What? What?" This morning I told her I didn't know. I was still learning. Things I wish I'd known 10, 20, 30 years ago. I would have been a lot happier, and maybe Mr. Simply would have been, too.

I know you can't tell people these things. Without the lived experience, it means nothing. But I'm still thinking about setting up as the old crone on the outskirts of the village, that people come to see, bringing little gifts or doing little chores around her cottage. (Think Grandpa Sam Reaches in Thunderheart).

Go watch it again. And then think about coming by tomorrow, or maybe the next day. Bring fresh-laid eggs. I will tell you what I have learned. Maybe it won't be too late for you.


Friday, February 13, 2015


I wrote this a year ago today in my Penzu​ journal, under the title "Frozen". Sorry, it's long, but seems so apropos to the grieving.
It was one of those moments I wished I could freeze in time, but of course one can't. I remember once, standing outside the gates at [my college] with [my college boyfriend], the light just so, at the end of the school year, I guess, and we were saying goodbye for the summer (pretty much forever, as it turned out), and I wanted to freeze-frame that one. Of course I'd done it before -- bound to have -- and certainly have done it since, but I was conscious of the effort then and kind of startled by it. Daisy and the butterfly was another one such moment. The bluebird in the snow on the branch of the blooming dogwood in our yard yet another. The eagle in the Boundary Waters Canoe Area during my Outward Bound vision quest. The foxes barking when I was camped with Daisy at her first hunting trial. 
This morning it was the snow. It was piled high on all the branches, which were stark against a grey sky. The cardinals were at the feeder in back and in the dying dogwood tree, the male a brilliant red against the white snow/black bark/gray sky, the only real color around. It was like the winters we had when I was growing up in NC. I feel blessed to have had not one, but two good snows this winter, when with global warming I've had such a sense of loss and sadness that I'd probably never see another one. And now to have two! 
I was glad to have been up to see it before it started to melt, which it is doing pretty rapidly. I was sorry to see the sun start to peek through. But as Cheryl Strayed wrote towards the end of Wild, "There was no way to go back, to make it stay. There was never that." 
Just being present for what is, as it is and as it changes, is the hardest thing when what I want with every cell in my body is to go back, to make something or someone stay, to freeze a moment, to hold on to the feeling of wonder and joy that I had this morning when I first opened the drapes and looked out on the magical world. 
And as I typed those words, feeling sad and empty, the phoebe flew into the yard for the first time in days (if not a week or more), and I felt that same surge of joy again to see him, and tears came to my eyes. He's so beautiful today: He fills me up all over again. 
One glorious thing gives way to another. 
So although I can still hear Paula's laugh, see the puppy Daisy lunging at the end of her check cord for that brilliant yellow butterfly, feel that bitty animal scampering over my sleeping bag that chilly August night on Lake Superior, it is over. There is no way to go back, to make it stay. There never was.
--And as I was reading this, and thinking that I have to believe that one glorious thing will go on giving way to another, as has been true time immemorial and forever shall be, that the good life isn't over because Mr. Simply died and I'm getting old, and not having much faith in any of that, a Sharp-shinned Hawk flew into the yard, landed right outside my window for a few seconds, looked right at me, and flew on. 



Thursday, January 22, 2015

It's the Little Things

Mr. Simply's hunting clothes are mostly in the back of the truck now, ready to go to Goodwill tomorrow morning. Looking at his side of the closet, standing almost half empty now, makes me sad.

The boots were the most difficult to let go of for some reason -- his Herman Survivors, the work boots he loved, and his hunting boots. There was something especially touching about the hunting boots, still caked with last year's dirt and smelling faintly of doe lure. They brought back memories of lying in bed in the dark at 4:30 of a Saturday morning as he dressed in the light from the closet, trying not to disturb me. His camo, his boots, his suspenders. . . and then he would tell me goodbye, and I would always tell him to Stay safe, have fun, don't forget to call me, tell everybody I said Hi and he'd be off to meet the guys for breakfast at the Waffle House in Newnan. So many seasons, so many mornings like that.

He used to say that an hour in his tree stand was worth three in therapy.

By July his bucket list had shrunk to two things: one last trip to visit with family, one last hunting season. Why all his stuff was still here, why he didn't give it away with his fishing gear and his climbing stand last summer.

When it became apparent he wouldn't live even that long, he began to hope for just one last opening day. The guys spent all summer building a special stand for him where he could sit, under cover and wouldn't have to climb, and Chris C. was set to take him, to stay with him for a morning. But by the time opening day rolled around he was too sick, half out of his mind, weak, incontinent, his bones too fragile to go anywhere, never mind into the woods. In two weeks he would be dead.

I had to take a photo of the boots, like I did my hikers, before I was finally able to let them go. I hope they'll make some other guy as happy as they made Mr. Simply, and that they'll bring him luck too.

Saturday, January 10, 2015

Charlie Mike

It means, "Continue the Mission." When I was working at the mental health center, I read a novel called Charlie Mike, written by Leonard B. Scott, a veteran of Viet Nam. His theory of PTSD, not a bad one at the time, was that when you are in the shit you don't have time for tears or navel-gazing. If you are going to stay alive, if your buddies are going to stay alive, you have to Charlie Mike -- Continue the Mission. It's only when you are back in The World and nobody's shooting at you any more that you think about those things, and feel them.

I think most of last summer and fall I was Charlie Miking. This afternoon, while fixing lunch of all things, I burst into tears remembering how he didn't get into the study, and how much I would have given for two more years. (His doctor had told us that there was a "little statistical tail" of people in the study who were still alive after two years. Whereas, according to all predictions, Mr. Simply at that point had less than two months.)

Two more years! How rich that would have seemed! Instead, in four short days he was in hospice and dying. In six weeks he would be gone.

I don't remember if I cried the day he called me and said he'd been rejected from the study again, this time because of his liver function. But I sure as hell did this afternoon.


Thursday, January 8, 2015

Someone posted on one of the widows' pages on Facebook that I belong to that she felt today that her life was a test for which she had not studied. I hit "Like" and then immediately un-Liked it, for I realized that I did not feel that way at all. Which kind of surprised me.

I've been thinking about her all day, but now I can't find the post to respond to it. What I have to say is probably a bit long for a Facebook post anyway, so.

I realized that I've been studying for this since I got sober some 28 years ago, give or take. The purpose of AA is, after all, to fit us to live life on life's terms, is it not? In one of my favorite stories in the Big Book, "Doctor, Alcoholic, Addict" it says that ". . . acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing or situation - some fact of my life - unacceptable to me, and I can find no serenity until I accept that person, place, thing or situation as being exactly the way it is supposed to be at this moment." And well over 10,000 recitations of the Serenity Prayer will go a long way to teaching you acceptance.

Plus, I've been practicing Zen sitting meditation for years. Studying Buddhism and meditating has helped me develop a degree of non-attachment. Buddhism teaches a Nine-Point Meditation (Buddhists, like widows, seem to like to count things) that says we are all going to die. We likely will not know when or how. And when it happens, our friends and family can't help us, our things and money can't help us, our own bodies can't help us. The only thing that can prepare us is meditation.

Have these things helped? I believe so. I am better than I used to be about not clinging to things, being afraid, wishing things were different (nay, demanding that things be different!), bargaining, lashing out when things do not suit me. I think I added to my own suffering in these ways last summer and fall far less than I might have 30 years ago, or even five years ago.

It is possible to look at life as a test, although that is not a point of view that I recommend. But if it is, then Mr. Simply's death was the mid-term. I'll pass my finals if I can face my own death with the same kind of grace, equanimity, courage and generosity as he did.


Sunday, January 4, 2015

Don't You Worry 'Bout a Thing

Was looking for music to put on a soundtrack of our lives to play at Mr. Simply's memorial and found this:
"Don't you worry 'bout a thing
Don't you worry 'bout a thing, pretty mama
'Cause I'll be standing in the wings
When you check it out"

-- Don't You Worry 'Bout a Thing
 Stevie Wonder (1973)
It came out the year we started dating. Not long after I added it to my playlist, I got a package and went out to get it. My leg was bothering me, sore and weak, my arms were bothering me, and I felt a moment of real fear. What if?

We are so vulnerable when we lose a mate, when our life partner is no longer there in the wings to step up, pitch in, catch us when we fall. 

Mr. Simply was quite the caretaker, and when we met set right out trying to do things for me and worrying about me even in areas in which I had been functioning quite competently, thank you very much. He wanted to find me a rollbar for Orville (my 1973 MGB). He worried about how I'd get to work if there was ice on the sidewalks and parking lots, and on the stairs at my apartment building. And over the years, I became more and more dependent, forgetting quite literally how to do some things, just getting out of the habit of others. And then of course there were the myriad ways in which even normal healthy couples do for each other.

He didn't get my graduate degrees for me, but he was "in the wings" both times, supporting me (literally and figuratively) every step of the way. He was literally in the wings when I defended, slipping in and out to check on Daisy's progress in emergency surgery and signaling me with a thumbs up from the back of the room each time he returned from talking to the vet.

Over the last few years, he was doing less and less, and I was doing more.  And what we couldn't do just didn't get done. The yard hasn't been raked in so long, for example, that the leaves and pine needles are becoming soil and changing the shape of the yard and the way rainwater flows around the house -- or doesn't any more, to be perfectly frank.

But still. Even after he got cancer the first time, he managed to move my office for me not once, but three times. Three times! Of course, the last time I was down to some boxes of files, but still. He did all the grocery shopping, right up until he went into chemo last year and was too sick to, because my legs would no longer support me that far or that long.

Two years ago, he took money out of his IRA to buy me a van to carry my scooter, and a lift to get it in and out of said van. There were the new windows on the house that he paid for, also out of his retirement fund, last summer. The old ones were so old (and so was I, for that matter) and sticky that I could no longer manage them. And he was always there for emotional support or just to bounce things off of.

Last spring, he came to the hospital, even as he was dying, to be with me when I needed him. "Do you want me to come down?" he asked on the phone. I had not even wanted him to know until after I got home that evening and it was just a funny story, but then they decided to admit me for observation overnight and I had to tell him. "Yes," I said. And he came, even though he was loaded up on pain pills and had to get a neighbor to drive him. He came when I needed him.

I'll never have that again.