A poem worth noting

I’m about to cut and paste a poem from today’s Writer’s Almanac. I’m sure I’m in deep violation of some copyright law or another, but this poem reminds me so much of Tom’s last days that I’m going to do it anyway. If it touches you, subscribe to Writer’s Almanac.

Poem: “Snow” by Elizabeth Tibbetts, from In the Well. – Bluestem Press, 2003.
Reprinted with permission.

Snow

The old, blue-eyed woman in the bed
is calling down snow. Her heart is failing,
and her eyes are two birds in a pale sky.
Through the window she can see a tree

twinkling with lights on the banking
beyond the parking lot. Lawns are still green
from unseasonable weather. Snow
will put things right; and, sure enough,

by four darkness carries in the first flakes.
Chatter, hall lights, and the rattle of walkers
spill through her doorway as she lies there?
ten miles (half a world) of ocean

between her and her home island.
She looks out from a bed the size of a dinghy.
Beyond the lit tree, beyond town, open water
accepts snow silently and, farther out,

the woods behind her house receive the snow
with a faint ticking of flakes striking needles
and dry leaves-a sound you would not believe
unless you’ve held your breath and heard it.

Tom died tonight

Thanks to all of you who have borne with this saga so patiently.

Tom died peacefully, apparently at full rest.

I will miss him tremendously, but I am so glad he has gone on to whatever comes next.

Death watch, and other miscellany

I’m back, although I have to confess that there were times today I didn’t think I could make it home tonight under my own power. But the regenerative characteristics of Starbuck’s bottled frappucinos (sp?) is amazing.

This business of trying to help someone you care about die with a certain amount of dignity is tricky. There are so many moments of sadness, loss, frustration, and sheer terror.

But then, there are also all of these opportunities for the blackest of black humor. Talking with the hospice nurse today, I relayed a couple of stories and noted, “I have a very black sense of humor.” She laughed and said, “You have a great future with hospice care should you ever want one.”

To wit, one: Tom still believes in his heart of hearts that he can do any thing he sets his mind to. His muscles are failing him (that could have something to do with the one-third or more of his body weight that he’s lost–one of Lisa’s questions for the hospice nurse a few weeks ago was “How can anyone so thin still walk?”), so getting up and out of bed is a challenge.

But Tom is an engineer, so he has figured out that if he can get positioned and rock back and forth enough, he can catapult himself to his feet. This has a good side and a bad side.

Last night on Tom-watch I lay down beside him and he decided to get up. Before I could get around the bed to help him, he used the catapult technique to catapult himself right into the dresser, head first. I didn’t even see the cut over his eye when I first helped him up. But I heard him hit.

Here’s where the terror comes in. I’m thinking, “OMG, concussion at the very least.” I’m starting to panic, wondering if I should call hospice or 911 or someone. Then reality kicks in.

Concussion. Headaches. Confusion. Trouble in recalling words and speaking clearly. What would be different? A brain tumor is something like a permanent ongoing concussion, or at least this particular brain tumor is. A part of me wants to giggle. Another part wants to cry.

The hospice nurse reinforced that. She said, “At this point, almost nothing matters.” The hospice primary care person said, “Now we talk about weeks rather than months. How do we keep him comfortable?”

As part of the comfort therapy, I drove across Salem today to pick up two prescriptions. A hospice volunteer was with Tom, who can’t be left alone at this point. Tom’s treatment plan changed abruptly today, and I thought if I picked up the medications, it would save Lisa a struggle with how to do it. The prescriptions were to be filled at a pharmacy about as far from Tom and Lisa’s house as you can get and still be in Salem, because the pharmacy happened to be the only one that had one of them in stock.

When I got there (about a 25-minute drive), the pharmacy had decided they could only fill one prescription without additional faxes and information from the hospice prescribing physician. So I could fill one prescription, but not solve the main problem.

I almost went ballistic. I even considered just leaning across the counter and bursting into tears (I was so-o-o-o tired at this point). But instead, I decided to get what I could get and go fight the battle elsewhere.

Then the clerk behind the pharmacy counter said (prescription medication in hand): “Since Tom has never filled a prescription with us before, we need to develop a profile for him.” (It is worth noting that at this time there were eight people behind me in line for this single clerk.)  I bit my tongue, gave her his full address (I couldn’t remember the zip code exactly, and after 2 minutes of dithering around with her computer and throwing various options at me, the clerk said, “Never mind, we’ll fix it later.”)  and phone number, date of birth, location of any moles, and so one. Then the clerk asked, “Does he have any allergies?”

That stopped me cold. “I don’t know,” I said, “but since he’s dying of terminal cancer does it really matter?”

“Well,” she said, “we wouldn’t want to make him sick now, would we?”

Now I’m having a lot of trouble even categorizing this post. I’m going to quit and go to bed. Lisa was so worried when I left that I called to tell her I got home safely (still feeling guilty for leaving her alone with Tom). She said (with a rueful voice) that he was stuck in the hall again. So we kept the conversation short and I felt guiltier than ever at leaving her to deal with this alone.

It should not be this hard to die.

This business of dying is a strange business

Yesterday was Tom’s 50th birthday. Lisa decorated the house beautifully (Tom, a helicopter nut, said the streamers from the ceiging reminded him of standing under a Huey, and he really like them), bought and wrapped a present, and got up to share it with him at the best part of his day, early morning after a night’s sleep. She got him a cake and I got him a cake.

She said he seemed really excited about the fuss being made over his birthday. “You don’t suppose he thought we’d just let it pass by unnoticed, do you?” she asked me.

It’s hard to know what to think. Tom is on that roller coaster that goes with deteriorating health, down, then up again, but never quite as up as he was before, then down, and almost up again, and so on. He is essentially blind now, so most of the things he sees are hallucinatory. But the worst part of it for him is that he’s losing conversation. He tries, but it’s increasingly hard for him to pull out the word he’s looking for.

This morning I fixed him a scrambled egg (he ate a whole one with enthusiasm yesterday) and he asked where the ketchup was. I rummaged around til I found it and brought it to the table. I asked him how much he wanted and he started shaking his head in a horrified manner. Turned out that what he wanted was a Kleenex, another K word, not ketchup at all.

Yesterday he did seem excited. We ate chocolate cake with raspberry filling and ganache icing with our fingers (it’s easiest that way when you can’t see a fork). I cleaned the dropped chocolate from their white carpeting after he laid down again, and I think I did a passable job of it. I cooked him a birthday dinner of baked chicken and asparagus and biscuits that only Lisa and I could enjoy.

Today he was semi-comatose.

Last night he got up from a very deep nap to see the lunar eclipse with which the universe had honored his 50th birthday. I don’t think he could see it at all, frankly, but he pretended that he did, and he seemed excited about it, even chastising me for not bringing my telescope when I came to his house. It never even occurred to me to do so.

I lost a good friend about six months ago after a very long illness. Fred was nearly 80 years old and had been battling emphysema for some time. His actual dying was long and dragged out, miserable for him.

But like Tom, Fred retained his sense of humor. It was very hard to lose him even knowing how difficult living had become for him.

It is the same with my brother. I hate, hate, hate seeing him suffer like this, waking with excruciating headaches that are relieved only somewhat by the same drugs that produce the hallucinations that frustrate, frighten, or confuse him. It shouldn’t be this hard to die.

On the other hand, I know that when he is gone he will leave a void in my life. He’s much too young to be dying (he calls it “taking a shortcut to where we’re all going in the end”). In the natural order of the universe, he should be around to mourn me when my time comes. This is backward.

I have a sibling or two who won’t come to visit. One of them said she was unable to deal with the “emotional issues raised at times like these.” I understand her view, but I keep hearing the hospice nurse saying, “You will never regret the time you’ve spent with your brother during these weeks.” And I know she’s right.

I’m not sure where I am going with this, so I will say only that when I die, I want to just simply fall over dead (unless I can die in my sleep with no previous warning). I haven’t been afraid of death since a near-death experience when I was about 25 years old. But I am afraid of being maimed, incapacitated, unable to care for myself, dependent on the kindnesses of others no matter how much they love me or I love them.

Just let it be fast when it comes at last.

Two days with Tom

The cancer progresses.

I’m trying to spend a couple of days a week in Salem. The only thing I can do for my brother at this point is let him know how much I love him. So that’s part of it.

And the only thing I can do for my sister-in-law is give her a chance to have a few hours of normalcy in the course of all of this. So that’s another part.

Tom is a tall guy, and right now his skin looks like it belongs to someone three time his size. His visible tumors become increasingly swollen and red and angry. The worrisome ones are apparent only by the effects. The one in the brain  causes anxiety, paranoia, hallucinations, and confusion. The ones in his lungs are shortening his breath and causing a lot of congestion. It’s hard.

Somehow he still maintains a sense of humor, and periodically it surfaces. It reminds me why I love him so much.

I believe that we are not offered things with which we cannot cope. As Leslie Nielsen says in one of his insane movies, that which does not kill us makes us better. I take that more seriously than he seems to in the movie, but then Nielsen was never serious in public.

This is not killing me, but it is very, very hard to see someone you care a lot about suffering at this level. Hospice is great, and they’re keeping him physically as comfortable as is probably possible. But he still has enough cognition to feel what’s happening. And it hurts him.

I think at this point if I could give him one gift, it would be the gift of nepenthe, no sorrow, of oblivion. But I might be wrong about that. There is, after all, that occasional sense of humor.

That’s all for tonight.

Of course, we are all busy dying

That is not meant to be flip. The amazing thing is that we also get to cram so much living into the process. But every seven years, your body has replaced every cell in it with a new cell generated for one that has died off. How many bodies have you had?

One of my all-time favorite movies–perhaps my VERY favorite–is Zorba the Greek. The story is taken from a book of the same title by the Greek writer Nikos Kazantkakis. I suspect I must have mentioned this before, because my dear friend Phil sent me a copy of Kazantkakis’s Report to Greco that occupies a treasured place on my bookshelf. I share so much philosophy with this man. But that reflection is for another post.

It’s impossible for me to think about dying without thinking about Zorba. The movie is brilliant, with incredible performances by Anthony Quinn as Zorba, Alan Bates as “the Englishman” (a bookish sort who comes to this small Greek island with visions of imposing his orderly logic on the project he’s sent to manage), and Irene Papas as the young Greek widow who is stoned to death for canoodling with the Englishman. Then of course there is the unforgettable performance of Lila Kedrova as the aging courtesan, a character I seem to relate to more and more as the years pass.

There are many influences of this movie I can picture in my life. One of the most vivid is an evening drinking ouzo in a tavern in San Francisco’s Tenderloin District with a bunch of Greek sailors and dancing all night to bazouki music until I could hardly walk to my car, let alone drive home. I’m not sure I would have braved the dancing without the memory of Zorba resonating in my brain, but I can say that it was a highlight night of my life.

It also taught me not to drink ouzo. No matter how much I like the taste of anise and the mysterious way this crystalline liquer turns cloudy with a drop of water or melting ice, the next morning’s head isn’t worth it.

This really is relevant.

The young Greek woman played by Irene Papas is stoned to death by the villagers after spending a night with the Englishman. What follows is this (probably loosely paraphrased):

Zorba:  “Why do the young die?”

Englishman: “I don’t know.”

Zorba: “What the hell is the good of all your damned books if they don’t tell you that?”

Englishman: “I don’t know.”

As a book person, I don’t know either. I do know that books are important to me, that they give me a window into other people’s minds and other ways of seeing.

But I, too, still don’t understand why the young die.

I also don’t understand why sending this message off into the ether gives me comfort, but it does. And when I get notes back, the comfort is doubled. Thank you, Phil and Jeff.

When someone you love is dying

There’s a lot of that going around these days, it seems to me. But this one is particularly hard.

I know I’ve been absent recently. I just don’t feel like writing. I feel mostly like drinking, and playing Mario. I’d like to go for a walk, but walking in the rain when it’s raining inside my head already seems counterproductive.

Tom’s condition is taking the expected path. He’s losing the vision he has in his remaining eye, something that’s particularly frustrating for him. He has occasional conversations with people who aren’t there, asks whoever is sitting with him to hand him something that only he can see.

They’ve adjusted his meds to make up for his weight loss (at about 6′ tall, he weighs around 130 pounds at the moment), so at least he’s able to walk and talk again, although the words he’s looking for sometimes just aren’t there.

He’s short of breath occasionally, a sign that the tumors in his lungs are growing. Hospice has been terrific, but they can only try to help him be comfortable. They don’t have any miracles to offer either.

If he makes it a couple more weeks, he’ll be 50 years old. What he seems to want most at the moment (if he can’t be well again) is to die. It just doesn’t seem fair.

I feel that at age 50 I was just beginning to discover who I really am. Tom said a couple of weeks ago that he thought the two of us were more alike than any of our siblings. I suspect he’s right. And he was just coming into his strong period when the roof caved in on him. This stupid cancer that he’s fought so determinedly for about 20 years will not be denied. It’s determined to claim him. It probably will. We’re out of options.

So if I’m not around occasionally, it’s because I’m doing for my brother the only thing I can do for him at this point: I’m letting him know how much I care about him.

We’ve had some great conversations. As a very young woman, I had a near-death experience, one of those out-of-body things. It wasn’t my time to go, and I came back. The only thing Tom wanted to know was this: Did it hurt? Luckily, I was able to tell him no, no it didn’t hurt. And yes, yes there is something on the other side.

I’m going to just keep doing what I’m doing, hugging him whenever possible. I don’t know how much longer I’ll have to give him hugs. But I have an endless supply. I can hold out as long as he can. . .