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.

Solstice countdown

The winter solstice is expecially troublesome in our house. We are far enough north (approx. 44th parallel) that there is a substantial difference in the amount of light we get at different times of the year. It’s wonderful in the summer, when days last til after 10 p.m., but this time of year it’s totally dark by about 4:30.

Ben deals with it better since he learned to start counting down early in December the number of days until the light starts to return. Only a couple of days left now, so we’re all looking forward to the days being much, much longer. I believe it’s about seven minutes a day that the light increases. But psychologically, it feels like much more.

Some people take drugs for sinuses and headaches. I’m not one of them. So far Wii is working equally well, although it may be raising my blood pressure. I’m afraid to check. It’s time to go read the manual and see what those little crowns on the map mean. I think they mean you’ve cleared a galaxy, but if that’s the case, I have to go revisit some places.

But I have 14 stars, and I killed both the stupid mushrooms (goombas, I seem to recall from earlier Mario games?) on Yoshi’s head and finished off the tarantula, so things are going well. Josh is right, the game just keeps getting better and better.

I really enjoy the good Mario games. I like Zelda, too, but there’s a complex puzzle-solving element to those games that my brain just isn’t up to at the moment. Ben is much better at those than I am, and I’ve managed to give him my sinus infection, so he’s not very much in a puzzle-solving mood.

But Mario, at its best, is full of action and concentration. You have to pay attention when the game is teaching you a new skill, because you’re certain to need it very soon. This is the best Mario so far, and I’ll probably wear out the generator playing it.

Dinner in the oven–blackened pork chops baked with stuffing, to which I’ll add mashed potatoes, gravy, and spinach. I know I’m on the mend, because yesterday my appetite came back. I think I lost about five pounds last week (yes! but not my favorite way to do it) because food just didn’t sound good. But yesterday, suddenly, I was hungry again. Makes it easier to cook, too, when you can imagine how luscious something will taste.

A big apology to my online community–I do care about you

A few days ago I received an e-mail from Dave that said something like “OK, it’s close enough to thirty days since you posted that I’m worried about you.”

 He’s right. It’s not fair to just abandon things in mid-stream. But I’ve suffered from an amazing period of not being able to write. Here is the cause of the blockage:

My brother Tom is almost certainly dying. His doctor has told him that he no longer has any faith that his treatments will substantially improve his condition. The chemo has stopped the growth of the tumors in his lungs. The tumors in his head continue to grow. In a couple of weeks, they’ll try a slightly different treatment. But the prognosis is not good, and in the meantime, he is in pain.

I didn’t want to write that, but perhaps, having done so, I can go on and write about something else. I hope so.

At the moment, what I really want to do is go out in the night into the darkest part of the woods and scream at the universe about the unfairness of it all. If I thought it would really help, I would. But somehow I’m losing faith that the universe really cares.

Untimely death shakes your faith in “truth, justice, and the American way,” to quote someone (Superman, perhaps?). Death is a part of the life cycle, but it belongs in its proper place. It should not be allowed to intrude out of turn where it’s not expected.

One of my all-time favorite movies is Zorba the Greek with Anthony Quinn. There is a scene right after an untimely and brutal death where Zorba asks: “Why do the young die?”

The Englishman responds: “No one can answer that, although many men have tried to.”

Zorba, in exasperation, says: “What’s the good of all your damned books if they can’t tell you that?”

I’ve paraphrased the dialogue, but that exchange has stuck with me for 30 years or more. I’m a great believer in books. But I’m also a great believer in order, and frankly, the older I get, the less there is.

Icepacks and ibuprofen

Barbara wrote to commend me on my bravery. There is absolutely no truth to that whatsoever. But icepacks and ibuprofen have worked wonders on my wrenched knee, so I’m getting around pretty well again, can even come upstairs to my office to blog. My ribs are still incredibly sore, but the ibuprofen helps, and I think the only other remedy is time. I even got very brave and barbecued again last night. It was far too hot to light the wood stove.

I made a test run to Corvallis today, spent a small fortune at a couple of stores, managed to get around OK and restock some needed supplies. I also bought fresh halibut filets and shrimp, so it’s barbecue again tonight. Ben and Ralph would do some of this stuff for me, but I do it so much better than either of them that I’d just as soon go myself.

The garden is going nuts, which is part of why I can’t be laid up. Yesterday we harvested cauliflower, cabbage, lettuce, the first tomato, the first long cucumber, and the first zucchini. The patty pan squash is only a day or two away, the first beans no more than a week. And of course, the berries didn’t hear there was no one to can them, so they continue to go wild, too.

I’m once again my own worst enemy. But I found today at the grocery store a large and very healthy trumpet vine. My grandmother had a huge one very near her fishpond, and I’ve always wanted one. I bought this one and I think I’ll put it in the corner of the garden. I’d love to have it near the house, but we have very few spots with enough sun around the house, and the few we have Ben keeps threatening to build a porch on, so I’m not supposed to plant there.

I also found a couple of woodland orchids. These are very beautiful and need shade and moisture, which is a perfect description of the spring overflow garden where I’ve planted mostly Japaness and Siberian irises and several kinds of hostas and hellebores. So I bought the last two they had, and as soon as I can climb the bank, they’ll be taking up residence there. They are a brilliant light purple in color, and it was love at first sight. The slugs may love them, too, but I’m going to chance it.

It’s a lovely summer day here, 70 degrees or so, intermittent clounds, but mostly very pleasant. So I think I’m going to quit this and go outside for a little while.

Curses, itinerary, garden update, and other miscellany

Remember the old Chinese curse: “May you live in interesting times”?

(If you are Chinese and this is not an old Chinese curse, please don’t write to tell me so. I’ve had enough interesting times this week.)

Tuesday was one of those days when the universe says, “Go with the flow, but don’t get caught in a rapid.” I got up in the morning with my whole day planned, did nothing I had planned, but had an interesting day anyway.

When my writing appointment got cancelled by the other person’s ill health, I finally made 6 quarts of sauerkraut. Then I drove into town to have dinner with Barry Lopez and Debra Gwartney (and 4-5 others) and to hear Debra talk about writing the memoir. Great evening, but I had forgotten to take my ibuprofen, and by the time I got home, my pleurisy was acting up big time and I barely made it to bed.

Wednesday I got up feeling a little better, picked 3 quarts of blueberries and did assorted miscellany, figuring I’d drive to town in the morning to get the size canning jars I wanted for the blueberries (the same size I gave away dozens of earlier thinking I’d never use them again). But I tried to cook dinner on the barbecue, and somewhere in the process I stepped on (I think) a big rock that had wandered onto the patio from the driveway, and it sent me flying.

Spatula in one hand, grilled bun in the other, flailing, I flew across the yard (I think I actually collided with my truck in the driveway, causing most of the damage) and landed hard, resulting in a bunged-up knee and several cracked ribs.

So I’ve been pretty much out of service the last couple of days.

Today, I can actually put some weight on my knee even while I’m flexing it, so I have high hopes that I’m recovering there. My ribs still feel like someone is sticking knives in me every time I move wrong, but I’m sure they’ll get better also if I just give them a year or so. What some people will do to get out of hoeing in the garden. . .

So for the last couple of days I’ve spent most of the time reading the new library books I had the good sense to check out when I was in town on Tuesday. I got a book about the thirty-mile fire in Washington, Susan Sontag’s last book of essays and speeches, and a wonderful book of poetry by one of the members of one of my writing groups.

The garden is coming on hard and fast, so I can’t afford to be laid up. I picked another quart or two of blueberries today, Brenda got me the jars I wanted in town, and I’ve been canning. Of course fresh blueberries are far better than canned, but we will have these long after the fresh ones are gone.

The lettuce is almost done, but the summer squash is almost ready. The first baby green beans are there (that’s a canning marathon I’m not looking forward to, but I love my canned green beans), the first tomato will be ready within a day or two, also the first cucumber, the dahlias have buds, the roses and snapdragons have exploded, and once again I’m really sick of berries. It’s definitely summer.

Now, Ralph and Brenda are here for burritos, and I must fly.

A quick brother update

Tom and I are back from Boston. The news is mixed, at best.

He was accepted for treatment at Mass. Gen’l, but as part of the planning they did a CT scan down through his chest (previous ones were head only) to make sure, as the doctor said, that they “knew exactly what they were dealing with.” The scan showed that the tumors have spread to his lungs.

This changes the picture considerably. The tumors are apparently not malignant or metastatic. The doctor seems to think they spread to his lungs from his sinuses through his airway. But the radiation that was so promising for the head tumors is apparently not the way to go with the lung tumors. They’ve recommended chemotherapy. Not treating them is not an option. The ones in his head have begun to grow agressively. There is no reason not to expect the ones in his lungs to do the same unless he goes immediately to war with them.

So here we are with fingers crossed. Keep up the good thoughts.