Nick Cave - Into My Arms

The Knuckle head will go in for surgery on tuesday. I know how this goes, having done it before. We'll wake at dawn and drive the empty early-morning streets, to the hospital. While they prep him, we'll chat about nothing in particular. I'll joke around, make him laugh, at himself, at me, at what we're going through. It's what I do, and one of the reasons he loves me. They'll put him on the gurney and give him something to relax him. Then they'll get ready to wheel him away. I'll walk with him, holding his hand, as far as they'll let me. When I can't go any farther, I'll kiss him, tell him that I love him. We've been together so long that simply saying "I love you" transmits everything - that he is the pillar of my life, that I am the light and air of his. Then I'll watch as they wheel him through double doors and away, and I'll go into the waiting room. I'll be for many hours. I'll listen to this song a lot - it is simply one of the most beautiful songs ever written - and I'll pray as best I can, and wait for him to come back to me.

The surreal life

Things are feeling a bit surreal around here. My husband, with his serious blood disease and varices in danger of bursting, but who looks completely healthy, is running around getting things organized for the big event. He's done the taxes, arranged his medical leave with the dean of his school, and found a temporary replacement to take over his job as chair of his department. Right now he's off taking a load of stuff to Goodwill, and after that, will go to the blood bank where they'll take blood to put aside incase he starts bleeding during surgery and needs a transfusion. Just another busy day....

As for me, I've got a list of things to do:
1. Clean house because people are coming to stay and help out
(and, of course, the cleanliness of my house is all my loved ones
will the thinking about when my husband's in the hospital!).
2. Get a cut and color for my hair (because when a gal's in crisis, she
has to look her best).
3. Stock the pantry and freezer with ready-to-eat foods from Trader Joe's
(well, at least THAT's not nuts!).
4. Do every scrap of laundry in the house.

It's clear, even to me, that most of this list is a feeble attempt to assert control over a situation that I have no control over. Which, I guess, is OK. Now that I'm coming out of my shocked stupor, I have to keep busy, doing something, anything, to keep from feeling helpless. Silly me.

Waiting

(photo from London SLR)

This afternoon my husband said casually, "Here's my living will. I'll put it in the secretary." I stopped what I was doing, and we looked at each other for a long moment. Then he turned away, back to his afternoon's work of putting "things in order." We haven't talked about it, but of course, we both know that any time you go under the knife, even for a simple procedure, there's a chance you'll die. And this procedure is by no means simple. He does have a world-class surgeon, but still.....

I'm pretty much a basket case right now, just want to hide my head and make it all go away. Which is not like me. Usually I'm a person who rises to a challenge. I guess I'm letting myself fall apart a bit now, while my husband is still his calm, efficient, functional self. Because on Tuesday morning, after they roll him away into the OR, it's going to be me, all alone, waiting, and I'll have to pull it together and be strong for a long time.

Spring

After the girls ate candy for breakfast and ran around like crazy bunnies looking for Easter eggs, I went out to work in the garden. I raked the late Autumn leaves off the flower beds. New daffodil leaves were hidden under them, pale yellow green because they'd been hidden from the sun. My youngest ran up and down the sidewalk, blowing bubbles and chasing them. It was a lovely moment in early Spring, but at the same time, I was distracted and worried about my husbands illness, and the surgery next week. Which is how things are now. Still, here's to Spring, to new beginings, and happy hopeful greening times in the sun, for all of us.

A little comic relief

My youngest, Thing 4, is an enthusiastic, and dreamy little creature, and though she does have many gifts, singing is not one of them. Not only can she not carry a tune, she can't even carry a couple of notes. But she doesn't realize it. She thinks that someday, she'll be on American Idol. So, to that end, she is making a music video. she has a camera that can shoot video clips and she goes up in her room, turns on the Hannah Montana CD, and rocks out, braying her heart out like a little donkey. I have wondered what she would make of the video evidence when she played it back and heard herself.

So today, she came downstairs and announced, "My voice doesn't sound good on the video." I said, "Hmm... well, maybe you need to practice a bit more." And she answered, "No. I have a really good voice. It just doesn't sound good when it's recorded."
I didn't have the heart to disagree. Let her keep her dreams a little longer.

So now you know how all those bad American Idol contestants get started.

Day 2 of the new reality

I was in a state of shock yesterday. Today it's settled into just stunned. I hope that tomorrow I will be able to start doing all the things I need to do before the 1st. It amazes me how the mind is programed toward equilibrium. It does not want to stay at extremes of either joy or pain. That's why the giddy rush of new love doesn't last. And that's why, after the first sense of drowning under the weight of a shock, we find ourselves rising back up to air, and eventually beginning to accept the deluge as normal. It's how our brain helps us survive.

We told the kids. The youngest, Thing 4, is being very brave and assertively chipper. She's trying to do everything she can for herself, making her own lunches, struggling with the heavy gallon milk jug to pour her own glass of milk. She's so like her father; putting on her "I'm FINE!" face, trying not to be any trouble to anyone. Silly, sweet goose, her and her father both.

The twins, Thing 1 and Thing 2, seem pretty down about it. They're quiet, deep kids normally anyway. But now they've lost that teen-girl froth of giggles and gossip. I wish I could hold them like I used to when they were little, heads resting against my shoulder, until their fears faded away in the light of my love and omnipotence. But they know, now, that I'm just human, and they know that shit happens.

I know that Thing 3, our special-needs girl, perceives more than she shows. So, for her, as for all of them, I'm trying to keep things as normal as possible; schedules the same, dinner at the regular time, etc, so the reassuring rhythm or normal life can calm them and help them feel safe. Tomorrow Thing 4 (who is on Spring break) and I are going to plant seeds in indoor seed-starter kits, to plant outside when the weather warms up. I told her she could choose any seeds she wanted to, and do everything herself - I'd just help her along. She chose sunflowers, which are perfectly her, and, clutching her seed pack, marveled, "Oh Mommy, I can't believe I'm going to be in charge of the sunflowers!" It seems like a hopeful, happy thing to do, which is good for both of us.

Surgery, again

April 1st. I had so hoped we could keep him safe and away from the knife. But the surgeon has convinced him/us that the knife is the only thing that can keep him safe. His blood is going to the wrong places, causing varices (badly swollen veins) which could burst and cause "a massive bleed." I'm devastated.

Me and my Knuckle head

I wanted to share with you all a little bit about my husband, aka the Knuckle head. Above is a painting I did of him a million years ago, when we were newly married. We lived in a one bedroom flat in Berkeley, where the light was wonderful. I worked in a bookstore and wrote and painted. He was a grad student at Berkeley. There he is, reading, working, keeping busy, as ever.

This charcoal sketch is from the same period, and it shows more of his soul - the sadness around the edges of his life, that keeps him working so hard, looking away from the past. He didn't have a happy childhood. There was a lot of neglect, the details of which are mostly his to tell or not. But he won't mind if I tell you this. He had an older sister who was born with spina bifida, and couldn't walk. She was a golden, loving person and he adored her. She died when he was three years old. He watched alone from his bedroom window as the ambulance men carried her body away on a stretcher. He once told me that the only happy times he remembers in his family are before she died. It breaks my heart. But the wonder of him, is that it didn't break his. He burrowed down deep inside himself, away from the cold of neglect, and waited.

The day I met him, he was moving to California from his fancy East-coast college. Funny story. He'd had a friend at this college, who also happened to be a friend of mine from high school. Before he left, he asked her for my phone number, just to have a contact. She said, "No, you wouldn't like her." So off he flew, without my name or number. His cousin said he could crash at his apartment till he'd found a place of his own. As fate would have it, I rented a room in his cousins place. I was a busy girl at the time; I was finishing up my English major, and I was in a serious relationship with a hunky grad student in Physics. But I remember hanging out and waiting to meet this cousin from the East coast. And when the door opened and this skinny, apple-cheeked, blond walked in, I thought, "That's the man I'm going to marry." I don't know about fate, predestination, or karma, but I do believe that I was waiting for him, and he was waiting for me. Though it took him a few more years to figure that out. But then, he's a cautious guy, because he's had to be.

Of course, it hasn't always been easy. When you live with a person who was not allowed to have needs as a child, they don't know how to recognize needs in themselves, or others, as adults. They don't naturally know how to look after a sick person, because no one looked after them. They don't know how to make those little thoughtful gestures - little gifts for no reason but love, a favorite meal - that grease the wheels of life together, because no one ever made those gestures for him. I can count on one hand the times he's brought me flowers, over the 25 years I've known him. If I want Christmas or birthday presents, I usually have to buy them for myself. Worst of all, he doesn't know how to cope with weakness, need, illness, in himself, so he ignores the messages his body is sending till there's a desperate, life threatening crisis. But he will never lie to me, never be unfaithful, and he will work himself (all too nearly literally, lately) to death to care for the people he loves.

And I'm no picnic in the park, either. I'm an impulsive, messy, big-mouthed, impractical woman, the fuck-up and black sheep of my family, and a (successfully medicated) depressive. But I'm also big-hearted, inclusive, non-judgmental, and loving. And I have made a home for him where he can bloom and be safe. So, here we are, two completely imperfect humans, who exasperate, perfect, and complete each other. ( Just to be fair, below is a pencil sketch of me from around the same time. Hope it's not too faint for you to see.)

Still waiting

The surgeon's office called today, blithely telling us that they have scheduled surgery for April 1st. That's without our say so, and without us or them consulting any of the other doctors.... Well, that's surgeons for you. We're still planning on talking to all the other docs - the hemotologist and our friend - and trying our best to make an informed decision. This is a very extreme surgery. Basically, they make a three-way transplant cut - like a Mercedes Benz insignia - on his trunk, which also cuts all the stomach muscles. Then they dig around, lift all his abdominal organs out, and tie off any veins that are in danger of bursting, then put it all back in, and sew him up. The surgery itself takes many hours, and the recovery is long and painful. I don't mean to gross you out, I just want to express what a serious decision this is.

My husband, from now on known as the KH (knuckle head), being who he is, is coping with all the stress, by working on the footnotes and illustrations for his book. Surgeons like to cut and academics like to research obscure subjects and write about them. It's a little Twilight Zone-ish for me, though. He started writing this very book five years ago, when he was recovering from surgery. He'd lost a lot of weight from the illness and then the surgery, and I remember watching him - as frighteningly thin as a WWII concentration camp survivor - sitting on our living room recliner with a legal pad in his lap, scribbling away as if his life depended on it. And in a way, it did. Writing his book was what he did to hold on hard to life. He'd been in danger of losing his life, and this book was the one he needed to write before... well, before his death, whenever that might be. So, skin and bones, and barely able to walk, he wrote and wrote, lost in the 19th century and in his own ideas.

He finished that book this January, sent it to his publisher, and promptly got sick again. I'm not usually a very superstitious person, but it does spook me a bit. It feels like this book is some sort of cosmic life insurance, and maybe he should find a few more really important aspects of 19th century culture to discuss before putting the book to bed.

As for me, I'm getting through the waiting by putting one foot in front of the other, focussing on the little tasks of each day - kids to school, kids home, dinner, dishes, watching American Idol with the kids - and trying not to think too much because there will be plenty of thinking to do next week. Just wanted to say, too, that I am visiting your blogs, I'm just too pooped out to leave comments. That's all for now. Keep ya posted.....

Update

No certain news yet. The surgeon who operated on my husband five years ago (and saved his life, so his opinion carries a LOT of weight) thinks we need to operate again. The hemotologist is less sure. Me, I'm seriously stressed, but trying hard to keep things calm for the kids.

The Knucklehead, part deux

Coached by the tart-tongued Yellow-dog granny, I'm practicing my new identity as Tough Love Mama:

"Sit, motherfucker. Stay!" Ok, got that one, and i can't wait to see my husband's face when I bark it out at him! I could smack him back down into the chair when I do, but I'm afraid he might clot or bleed or something. The next YDG line, "I don't look good in black," has a nice hint of dire things possibly ahead. But i think my favorite is, "I hope my next husband takes better care of himself!" So many possible dark threats in it.

Anyway, Knucklehead has a big test tomorrow to see if the shunt that was put in five years ago is still open. If it is, I'll breathe a ginormous sigh of relief because then it's becomes a matter of bleeding him and testing and retesting to see if they can manage it with phlebotomy. If not, then they'll probably have to add a second blood thinner to his daily meds, (He's been on Coumadin for five years) which has some risks, but not as many as cutting him wide open again. So here's hoping all goes well and that soon I'll be back chit chatting with all of y'all. X0X0X0 to all of you. got to go practice my lines some more................ ("Sit motherfucker! Stay!")

You know it's bad when.....

Apparently, in addition to having high hemoglobin, my husband also has high levels of hematocrit. ( No, I have no idea what that is and have to go look it up on Wikipedia.) But I know it's not a good thing to have high levels of because the hemotologist gave my husband his pager number and said, "If you feel ANYTHING unusual - a cramp, pain, anything - page me immediately!" So now I'm officially freaked.

Update on the knuckle head I'm married to

Five years ago, an eminent and world-class surgeon performed an experimental and life-saving surgery on my husband, and he is supposed to be monitored by this surgeon regularly, at least once a year. Supposed to. So after this recent hospitalization, he went for a follow-up to see his surgeon and got read a very long, loud riot act. My husband had, apparently, blown off this year's check up. So today he had to sit there while this man, to whom he owes his life, said things to him like, "You have been a non-compliant patient!", "I'm trying to keep you alive," and (the one that really got my Ph.D. husband) "I thought you were smarter than that!"

So here's the deal. My husband's hemoglobin count is high enough that he could have a stroke or throw a clot at any time. He had two phlebotomies last week and his count is already right back up up to where it started from. He's having another one tomorrow, and will keep having them until the count is controlled. He's also having an angiogram this week to see the state of his veins and (here's the really bad part) if the shunt the surgeon made for him five years (and that prevented my husband from having to have multi-organ transplant!) ago is still functioning.

My knuckle head is thoroughly humbled and promises me he understands, now, that ANY physical weirdness (e.g. headaches every day and chest pains!!!) will be taken seriously and immediately reported to me and to his doctors. We have agreed that if he doesn't listen to me, all I have to say is, "I thought you were smarter than that," and he will behave and do what I tell him to do.

I've been concerned about his daily headaches and fatigue for a long time (didn't even know about the chest pains) and am glad to have more info about what's going on in that complicated body my husband lives in. But it is nerve wracking to know what thin ice he's been skating on. I'm trying not to flip out about the fact that he's still at risk, until they get that hemoglobin count down..... The surgeon has yelled at him, which has more impact than any yelling or nagging I can do. And now we await test and treatment results and hope he doesn't have to have surgery again.

I'm exhausted, but hanging in here. Hope to be back chatting with you all soon. Thanks for all the notes, thoughts, and emails. They're much appreciated.