Three weeks

Since he died.  It feels like a year, except that I am still so intermittently, surprisingly wet.  I can't quite imagine in an actual year who and where I'll be in my life.  Warning, this blog is morphing from being a Gil updates to a Kathleen's confessional blog.  Consider discontinuing following it.
What I've learned so far:
*people are so kind and generous with me that I'm actually sort of uncomfortable
*I have a fear that being needy will make me vulnerable which gets in the way of my asking for help
*pride in my identity of being a self sufficient giver, may also get in my way
* I can learn how to handle new things like mechanical problems, if I ask for help.  
 So get over it Piper, join the real world of give and take, expectation and disappointment, "we all get by with a little help from our friends".  Because it is the real world, and the one I need to live in without Gil.

One of the oddest sensations is that I have few responsibilities tying me down.  I am free to go places, visit folks, spend the night, stand on my head (so to speak) I am not carrying the weight of his needs and limitations anymore, but, damn, I want it back.
Who would have thought I'd miss even the restrictions he put on my life, so much, so much?  I feel like the old Kathleen is dying and the new one has yet to be born.

I'm open to new poetry describing this birth, if you have a favorite.
Perhaps I'll need to write my own.

Taking care of business

Some of you have asked about contributing to Multiple Myeloma research.  I wish I'd posted it earlier, but there is a wonderful UW Hospitals fund called the Trillium Fund (Foundation?) that focuses exclusively on Myeloma research.  It was started by one of the founders of our support group.  Unfortunately, some of the others that say they do myeloma research, myeloma its self is somewhat of an add on.
I'll get more specific info by my next posting.

I'm making progress on closets, had my first head to head with "machines" when our riding lawnmower had 2 flat tires and a dead battery.  A neighbor helped, but I am coming face to face with
a) my discomfort around feeling, hell, being needy
b) Machine care, use, maintenance (I'm starting a learning log book to write down whatever advise I'm given in this category so I can read it later when I'm trying to remember the random number/nonsense syllables that I experience when folks talk about such stuff)  (better get over that!!!)
c) fear that I won't be able to afford to "hire out" those Gil tasks that  I have no natural affinity for.

SO
a) I think I may do as a friend suggested and develop an email list of those folks who have offered to help. When I decide I really need to use a "lifeline" I'll send out an email and see if anyone responds.  I won't have the discomfort of asking people directly and fearing that they are too polite to say "no", and hopefully being one of a crowd should make it easier for them to not offer.
b)  I've written down the numbers for buying the right oil filter and air filter for the lawn mower, and plan to change them this weekend, the start of my more nurturing relationship with machines!
c) I'm meeting with a financial person this afternoon to figure out how to manage my reduced income and see what I've got to spend to just pay people to do some of this stuff.

I'm starting to take care of business.
It still feels so odd.  Perhaps I've been keeping myself a little too occupied with activities and time with people I love.  I think I may need a little more time alone with the oddness of his absence,  to start to take baby steps into my life without him.

I had no idea it would be like this.

continuing

I will continue
writing, crying, cleaning, noticing, wondering
I am no saint; Gil is no saint.  Our relationship was not perfect.  But we were in relationship like two trees who are so close together that they start grafting into each other.  Perhaps greater distance, being a little more centered in my own life might have been "healthier", I might not feel so completely lost and disoriented now.  But I'm glad of the grafting.  I needed it, him, to become the more whole soul I hope to be.
His death is birthing me out into the world of credit card glitches and firewood and (heaven forbid!) machinery, alone, alone alone.  I need to step into being more than I've been before.  Without his death, would I ever have?  Not likely.   Do I want to?  NO WAY!  Birth is painful, not a choice, but it opens up a world of possibilities, another gift from him.

I remember when I finally decided to marry him.  We'd been together for 2 years, and I loved all the joy he was bringing into the lives of me and my boys. But I was terribly ambivalent.  I'd been married for 15 years before and when that ended, I'd felt like I was dying, feared for my guys, never ever wanted to put them or me through that again.  And Gil was soooo different than any man I'd known, not at all like the kind of man that Page/Piper women marry.  How could I ever risk committing my life to him?
I told him that I'd marry him "when I resolved my ambivalence".   But 2 years in, in the midst of a workshop we were doing, I realized,  I was never going to stop being ambivalent,  but commitment wasn't about knowing for sure the outcome, or the weather like quality of my emotions at the moment.  It was about possibilities, would marrying him open up vast possibilities for a life that I'd unlikely experience without him? yes   And it sure did.

Page/Piper women marry intellectuals, with spiritual and introspective leanings, men of authority who know the right way to do things and don't hesitate to instruct.  (obviously it's far more complicated than that but I'm sort of describing my step father)
Gil was a body man.  He played his body like a virtuoso musician.  Sports, music, dancing, he said that was the closest he could get to experiencing the spiritual connection I spoke of.  He felt his connection to the Divine in those moments.  His experience of his body was a psalm.   And he was gifted with the ability to enjoy.  Food, FUN, fooling around, games, people, people, people,  he was a joyful noise unto the Lord.  [listen to Cassandra Wilson singing Soloman Sang from New Moon Rising]

Neither body nor fun were my native language.      And they still aren't .  But he made me passingly bilingual  in them, a great moistening in my life!   And he was safe.  I never worried about him leaving me; I could count on one hand all the times in 27 years where he made belittling comments.  I'm afraid I was not so parsimonious.  But he would call me on it, and work through how he heard my unsolicited suggestions and what my intent was.  He didn't let me get away with too much shit, for which I'm eternally grateful.  He could have pulled me in more,  probably should have, but he didn't.  He freed me, to become so much more than I was when I met him.

So the pain I feel is a welcome side effect of how we grafted our lives together.  And I pray that I can keep the life force flowing through my Gil self so I can keep his wholeness in me, in my life.   Help me, I don't know if I can do it without him.

Disconcerting

Chris leaves today. I've bagged up most of his Goodwill clothes (actually from Goodwill as well as returning there. My guy was no clothes horse, and was sort of slipping towards "bag lady" fashion choices toward the end)

The "weeps" are more intermittent now, and unpredictable. I've actually felt the first wisps of anger (I've heard that's good) at the mess of empty CD cases and too jury rigged for me to use electronic spaghetti. I feel like I've been left holding the bag. But I'm mostly still stunned, and overwhelmed. I feel the need to get on top of...... fill in the blank with almost everything from our daily life, and also want to bury my head and not wake up. So much has been postponed or put on the back burner during this last stretch.

Slowly, gently, in time, in time, let the river carry you, there is love all around you, let it soak in, but I miss him! Slowly, gently, in time, in time. Life goes on.

One week

A week ago I woke up next to the guy in his hospital room and watched the sun rise with my yerba matte in hand. And now I am a lifetime away.

Someone asked about my "do over" comment. Here's what I was wishing.

If I'd known the Monday that he was first in the hospital, that it would be the last time to really have a conversation, oh the things that I would have wanted to talk with him about!! I started sleeping next to him Tues night, I wish I'd been next to him and snuggled him when he could have communicated more.

I wish I'd known we could have been more on top of the pain management. They were giving him morphine shots into his IV but that gave him ups and downs not the steady pain prevention of the continuous feed.

I wish, I wish, I wish I could have honored his desire to be back at the farm. If I'd known perhaps we could have gotten all set with Hospice before this last crisis and it wouldn't have been too painful for him to move.

I wish I could have realized how profoundly, deeply he was rooted in my body and soul, I would have wanted him to know how central he was to my life. He knew, I knew, but not like I do now.

I'm having more time where I'm dry. We had the baptism of his billiards parlor yesterday. All his pool buddies came and whooped and hollered,, God, he would have loved it!! We'll be putting out an invite for any and all who want to learn and be part of a monthly Billiards Bash.

And there'll be a firewood bee, and of course the Gil celebration in June.

Lot's

I wish he were here for

One step forward

Into my life without Gil. The emotional rainstorms abated for about 5 hours around the visitation, and have been only intermittent since then.

Is it time? or busyness that moves me one step forward from the loss?

I still speak everything as "we" but that's to be expected. Is it finally dawning on me that I will be continuing so "Pull up your socks, Ms. Page!!" as my Aunt Lou used to say??

The visitation, for those of you who couldn't come, was a perfect mix of music, food, pictures deep and funny and, of course, amazing people, from near and far, in miles and relationships.

I read all the cards that night, but am embarrassed to say that it wasn't til 2/3rds of the way through that I realized that the $ was getting separated from the cards. What an odd and wonderful tradition the gifts are, it's not so much a New England custom, but it feels so, so, that the community is helping to carry the cost of burying him, And I am grateful for that help. Just cremation was so much more than either of us expected. (but hey, what did we know?and never asked?)

The messages in the cards were dear and the food, great. Whomever made the marzipan bars and the nut macaroon bars, I want the recipes! and the chicken soup from my ex who never used to like to cook. It's a sign that people grow on. Perhaps I'll love to chainsaw.

Anything is possible, kind of like the Dr Seuss book "McElligets Pool" (If you don't know it, you should, with or without kids!)

Gil's bother Bob leaves today, Chris next week. It's the start of the next step.

A week ago he was still alive.

orbiting

Watching bluebirds nest, listening to "our music" one of our earliest and deepest bonds, I finally found a way to describe what I'm feeling. I've been orbiting Gil's mass, his needs and desires, areas to be careful of, passions, for so long , that it has become my gravitational center, what holds me in orbit. And I've lost it. I feel as though I'm shooting out into darkest space, without gravity to hold my feet to the ground except in fleeting moments.

I know that I need to find my own gravitational center in my own life, but it has been a long long time. I barely remember it.

And my fear, that this constant wet sadness will recede, and I'll be left high and dry with my body in the real world but I'll have lost the connection to him that this sadness gives me.

I don't want to lose this pain.

Silly

How silly of me to think that his pain in the butt qualities and the exhaustion of the last few months (years?) would mitigate the enormity of this loss. It's a little terrifying to realize how unprepared I am for this.

I want him back!

I want a "do over" of this last few months.

I want him back.

Putting one foot in front of the other

Pictures for the slide show, "arrangements" for the body, feeding the family, moving the chickens into summer pasture, it's all so foreign without him. I'm moving but it's hard to feel where I am in space and time. Thank goodness for all the help from friends and family.

Hope to see you at the visitation on Thursday, and the party in June. His spirit will be there.

Visitation

We are going to do a visitation on Thursday evening from 6 to 8 at the American Legion Hall in Barneveld. We'll have a slide show of pictures, and feel free to bring cookies or a snack if you want; we'll have soda. No open casket, just us, and a lot of folks who loved the guy.

We're still planning to do a Party/memorial here at the farm in June that Gil and I had been planning for a while. It will be all the music and games and drumming and food that he loved, and EVERYONE will be invited. He had hoped that he would be here to enjoy it; but his spirit will be.

When I can get my feet under me, I'll write some more about this last phase. There were some powerful moments. I am surprised by the awe full size of this chasm in my life. I still can't believe it.

Death

Gil died at 12:30 today, Easter Sunday. He had about a half hour of eyes off and on open, perhaps some recognition. Chris's recording of our chimes and rooster crowing seemed to bring him back to the room and then he let go.

Learning Curve

I'm learning a whole new way of looking at benefits and costs with Gil now. It's not about future benefits it's only about now. I used to be so ON turning and massaging, "greasing" his butt to prevent skin break down/bed sores. Now, the pain it costs him to turn is not worth it; his body won't be around long enough for bed sores.

When they discontinued the IV antibiotics I feared we'd be setting him up for secondary infections , pneumonia, return of the knee infections etc (which might indeed happen) but the pain of those, IF they happened, could be handled with morphine, and indeed pneumonia might help him slide over the edge, gently, they say. Who knew?

He started spiking a fever (probably the myeloma, it truly IS a raging fire now) and I had them give him a Tylenol suppository. Yes the fever came down but turning him hurt him. They said a fever doesn't hurt him. We can keep him comfortable through morphine and Haldol, the fever costs him nothing now; it's part of the process.

I'm on the bottom of a whole new learning curve. All my hyper vigilance to avoid problems, to minimize pain, maximize possibilities has changed. There are no more possibilities beside a gentle death. Now needs far less intervention than the future used to.

The Madison skyline over the lake is starting the magic moment of blushing. I AM going to get at least one more delicious sunrise from the best room on B6. (I thought it was going to be overcast/raining today) I am such a sunrise addict. I almost feel a physical tingle as the blush grows, hear a faint change in "the hum". I have tried so many times to catch the tricolored blush/gold/blue. Haven't captured it yet in wax or fabric. yet.

The first step in my new learning curve is just the realization that all my old ways of relating to his body, our joint plans and projects , my future, need to be learned all over again, with a whole new calculus. Everything has shifted and the first step in my new journey is just to remember that moment to moment. The next step of the learning will make it's self known as the first one soaks in.

Multiple personalities

There are only a few of the many people Gil is, left in the room. This thing is going so fast. Each day is like a week. Gil's ability to communicate was pretty much gone by Weds. Thursday we knew he could hear some of what was going on but not much of any response. When pushed to take meds or be turned, a flash of anger and resistance showed there was still somebody in there claiming ownership of the body. On Friday he was a little more present opening his eyes occasionally but not clear what/if he was seeing. He did blow a kiss to Chris and has been responding to our palm to palm pulsing hand holds which a friend just showed us, very soothing.

For the faint of heart, skip the next paragraph. As his body shuts down, amongst other things, fluid is collecting around his lungs and in his throat. The resulting gurgle is pretty disturbing, though they say it isn't to him.

But this brings out an odd assortment of my multiple mes. I woke up next to him gurgling and felt like Munches "The Scream". Fear is not a particularly big presence in the room for either of us I sense, except the awe/fear of staring into the complete unknown. There is a big part of me who is curious, another trying to be competent, and then there's sadness that sometimes sneaks up when I'm least expecting it and brings me to my knees with tears. I can't quite imagine life without Gil.

But that will be happening soon, very possibly today.

I wish I were good with the pictures in the blog thing, because we have the most beautiful view of the lake and the eastern sky from his bead. I wish he could see it, and the poster size photo of the farm view out the field that we have at the end of his bead. Perhaps he can feel them. I have been soaking up sunrises all week

Pain

Pain. Perhaps his gout came back and is making his joints so tender. Perhaps kidney stones can explain some of his symptoms. But the bottom line is we are in pain and trying to manage it with morphine and anti anxiety meds, and stroking and spooning in his hospital bed.

We're not going back to the farm unless/until we get on top of the symptoms and can back off on the pain meds enough so he can be

at the farm. The pain seems so unfair but what does fairness have to do with this passage? Gil is reaping the harvest of his heart in all the folks, in hospital and out whose love of him surrounds us both.

I feel so lucky to be included in the love he engenders in people. I wonder if I can internalize that reaching out to strangers and friends that Gil does? it seems so hard for me to do, but he has changed me.

I am not who I was when I met him, he's made me so much more open to people and pleasure and fooling around, indulging. I've been throwing money at him this last month or so. I want him to have the things that give him joy, he's so gifted at enjoying new things, new toys.

And games, bless his playful heart. My guys were so hungry for a playmate when he came on the scene, playing pickup stix or connect four, cards and magic tricks. I wonder if I can get into playing billiards? His beautiful new billiards parlor, can I embody him by learning to play?

I will be so much less without him. On our first anniversary we did the Meyers Briggs personality type inventory. We are exact opposites. We always said together we made a whole well rounded person. I want to keep him in me.

I am in pain, but mine can't be be helped with morphine. His finally seems to be. Bless persistent nurses.

Hospice

We spoke with Dr Callander and we're going with Hospice support. We hope to move him back to the farm on Friday, but if the move would cost more trauma than the joy it could bring, we'll stay on B6 with all the Gil groupies attending.

I've had lots of experience with Hospice during my mom's final years; this feels different.

It's hard

to believe

he's going to die

soon

(though the Ever ready Bunny has fooled us before!)

But now our support team is Hospice, and all the love he's engendered. We are being held in a warm and nurturing space. We can feel your love; it's alive.

Whiplash

Just as I posted yesterday's blog, the ortho resident came in and said that they thought that he didn't have a knee infection. Yea, relief!

[and I notice myself immediately putting my "we may be able to manage our way through this crisis" head back on]

And then the Hemo NP whom I have a lot of respect for came by and said that she thought they weren't interpreting the data correctly and she thought that he did.

[and my head whips back into "we're on the slippery slope"]

The day progressed, I checked in with Hospice again; they're just waiting for the word. Despite the pain meds and antibiotics, he's more confused, more in twilight sleep/dream land, and calling out with moans.

Clarity came later in the day:

Theory 1

He has a blood infection which is landing in several sites in his bod, perhaps even his heart valves. 48 to 72 hours of IV antibiotics should confirm or refute that hypothesis. If he isn't getting better by tonight, then infection is not the main culprit.

Theory 2

He's having an awful fallout to the intense chemo he got last Thursday. The worst would be this weekend and then he'd start getting better, but then I wouldn't ever want to uses them again which leaves us pretty naked chemo wise I think.

Theory 3

The Myeloma is back in it's roaring dragon form.

Theory 2 or 3 means Hospice as soon as we can get him home. After a phone call with Dr Callander, who's on vacation this week and we want to be part of this decision conversation. Gil is not able to be an active conversant right now; I'll need to channel the Gil that I've internalized all these years.

But it's time to decide. today I hope

I will post tonight

The moon woke me

around 3 am, and would not let me sleep. I cycled through my wanting to know (what quality of life is possible fighting a knee infection, what are the odds, should we do more or is it time for Hospice???) briefly on regrets (wish we hadn't done the knee replacements, perhaps it would have been better to quit with pneumonia than sepsis) and then just came in to be with him.

Who knows? We are where we are. Perhaps this and perhaps that but here is now, and that's where we are. He's getting a variety of antibiotics and fluids and time. He sweats, and then is dry. His knee hurts but is basically dealt with by pain meds and ice. He's present and then not. He's agitated some and then relaxed.

I'm going to look into Hospice and how that would work, pain management wise, if we went home. No decisions 'til it's clearly time to decide but the info junky in me wants to know what I can about options. Unfortunately I was never very good at chess and seeing multiple moves down the board. Good NYTimes op ed today by David Brooks about leaving the future it's options.

Several folks have called and wanted me to call back. I just don't have it in me. Please make do with the blog for now. We/you'll never have the ultimate good bye conversation; chew some more on the conversations with him that you remember and get whatever remaining relationship nutrients you can. He's already given you what he had to give. If there's more, believe me, I'll let you know.

a little food for thought:

The wilderness is not just a desert through which we wandered for forty years.

It is a way of being.

A place that demands being open to the flow of life around you.

A place that demands being honest with yourself without regard to the cost in personal anxiety.

A place that demands being present with all of yourself.

In the wilderness your possessions cannot surround you.

Your preconceptions cannot protect you.

Your logic cannot promise you the future.

Your guilt can no longer place you safely in the past.

You are left alone each day with an immediacy that astonishes, chastens and exults.

You see the world as if for the first time.

Rabbi Kushner

Lots of little joys

Bluebirds are nesting in the box out in front of the house

ALL the blossoms in the world are blooming right now, wild plum, and the pear and apples

The view down our ridge is gold with lush green stripes

The "billiards parlor" is painted a limestone gold and the carpet charcoal grey, with a lovely hanging fixture centered exactly over the teal green felt and his new 3 balls (billiard balls that is)

We've eaten well this last week, the best steak in Madison and the meat heaven called Samba for our 24th anniversary last Tuesday

I was blessed with three full out smiles (for real, this was no gas) by a 2 and 1/2 week old Sydney; God that girl has got me in her pocket now!

We took a brief road trip to Ohio to see David and it was wonderful, he's so, so ....centered, accepting, open and so loving with my guy, it was a delight to watch them together.

Watched "The Hunger Games" and had Shrimp Scampi.

And when we got Back from Ohio, Chris and Miya and Salla (C&M's beloved golden retriever) are here! for the week!

But

As we pulled into the farm last night it became apparent that Gil's knee was getting infected, pain, swelling, low grade fever

a late night run to the ER and he was admitted

the talk by the ortho team is of surgery.

It's our mid January issue of how do you handle a knee infection which if it's on the metal knee replacement, would require surgery.

And we're not going to do that.

We'll try antibiotics and see what happens with fresh blood.

His #s this morn an appalling red 7.1, white .6, platelets 3! arg

So we're back to harvesting as many little joys as possible

which will be a hell of lot easier if we can get

out of the hospital!!

to be continued, as they say, after more info from Docs. Dr Callander is on vacation for the week. But she will be very much involved by phone.