Doctor's Orders

 

"It's amazing how y'all handle adversity," our Cancer Specialist Oncologist begins the Zoom appointment.

Sarah and I don't expect this but we find ourselves pridefully smiling and nodding.

"You've crafted what works for your life and I support this decision," he beams.

Sarah and I feel affirmed.

"How is Che?" Dr. Starr asks, and we tell him when our foster puppy Raven died, she dealt with it firsthand, and asked at one point, "Is Dad going to be this stiff when he's dead?"

"Wait!" he says, stifling his laughter, "you foster puppies?"

Sarah explains it's a great distraction to cancer and keeps us focused on "Life".

"Remarkable," he mumbles, jotting notes.

"Where's the next trip?" he asks, resumes the examination.

"We're booked on a cruise to tiny Caribbean islands," we gleefully answer.

"Well," he summarizes, "this is working so well, why don't we talk again in several weeks?"

I nod that we're continuing no treatment at this time.

"Unless you need me," he quickly adds. "If you need me, call anytime."

Hanging up, we look at each other.

"It's funny," Sarah thoughtfully says, "that we really didn't talk about the cancer's progression at all."

Shrugging my shoulders, I say nothing.

The room is quiet for several moments as we're each lost in our thoughts and emotions.

"We should celebrate," Sarah finally smiles.

In no time, we're in a favorite local haunt, enjoying the Hell out of ourselves, laughing, making plans for the future.

That's what our cancer specialist oncologist prescribes anyway, so this celebration goes on for a bit longer. 

_______________

I'm dying as happily as I can, but I think I can to better. 

See how by clicking the link this link 

https://gofund.me/ffda4f4b

Thank you!

Future Plans

 

Sarah, Che and I are leaving Walmart but are blocked in because, in the handicapped parking space next to ours, a wife struggles to help her husband into their car. 

It is agonizingly slow and painful to watch. 

The wife clumsily drops her man into the passager seat, pricks his legs up, places them on the floorboard, then shuts the door. She looks tired and sad. 

"Well, that'll be us in 4 or 5 years," Sarah says, squeezing my knee. 

"FOUR OR FIVE YEARS?" I laugh. 

"Well, if you are," she shrugs, "we'll be like that. 

"Yeah," I laugh, and Sarah laughs with me.

We do keep an optimistic attitude and, in spite of multiple cancers, remain future focused.  

You have to be if you want to stay alive!

Dying in America is ridiculously expensive, inconvenient, invasive, complicated and completely out of your control. 

Sarah and I don't like to find ourselves in a reactionary position, as we like to have a plan and the only way you can develop one, is to talk. 

So we talk openly about it. 

"Da," Che asks, "do you think you'll still be here for my tenth birthday party?"

I shrug, squeeze her shoulder, smile and answer, "Probably not."

"Okay," she says, skipping back to her room. 

And we talk about the future. 

A lot!

Some of it's my future too.  

All of it's short term planning, mostly end of life preparation. The details are nebulous right now, but we're doing the best we can, and they'll work themselves out as we get closer. We don't dwell on it, though we do talk about it. 

We spend far more time planning Sarah and Che's future! 

Honestly, it's a lot more fun and exotic than that which involves me and I relish in these conversations and dreams. 

"God's greatest gift is the chance to start over," Eile Wiesel said, and there's marvelous excitement and joy in knowing, and planning, for it. 

Maybe, I might get to get a glimpse of what that future's going to be like, and it thrills me to think about the life they're going to have. 

Without me. 

It comforts me greatly to know they'll be fulfilling plans and living their dreams. 

So, I find myself thinking about Moses a lot. 

"There the Lord showed him the whole land ... I have let you see it with your eyes, but you will not cross over into it."

He led the people to the Promised Land, even got to see it, but never got to enter. 

And Moses dies after seeing the Promised Land. 

I'm okay with that. 

I want to glimpse, perhaps even touch, their futures before I die.

_______________

I'm dying as happily as I can, but I think I can to better. 

See how by clicking the link this link 

https://gofund.me/ffda4f4b

Thank you!

My Last Dance

 

Da, is that what you're wearing to the dance tonight?"

"Yeah."

{silence}

"Mom, can you please dress Dad?"

I have on clean blue jeans, a grey sweatshirt and two pairs of socks. Everything matches and I feel pretty good in them.  

Laughing, Sarah's already on it, finding me something more appropriate for the one hour dance at the school.

While they search, I stumble outside to get as high as I possibly can before we leave. 

I change into the chosen t-shirt to complete my wardrobe: Jack Frost from "A Nightmare Before Christmas.” Che just loves that movie.

She is dressed as a princess, sporting a dress she once wore in a wedding, with her long hair in a ball on top of her brightly bowed head. 

She is beautiful. 

Sarah drives us the 1/2 block to the school, conserving my energy, and drops us off. 

Che is a dancing machine at home, sings loudly and makes videos for us to enjoy.  She's forever grabbing me to dance and I whirl and spin her around the Living Room, like someone pretending they know how to shag. 

Which is precisely what Che wants to do now, she grabs my hand, and yells to her friends, "Watch this!"

I spin her around the dance floor, wildly flinging her as far away as her arm can reach, and then quickly pull her back close to me. We do this repeatedly. 

Only a few other parents are dancing with their children and none are moving with our passion and wild abandonment. 

This goes on for two-and-a-half songs before Brielle, Che’s friend, starts a conga line, which Che, and most every other kid present, joins. 

I stumble to a chair and collapse.

The conga line, a marvelous hodgepodge of diversity, comes by in a slithering line and multiple kids smile and high-five me as they dance by. 

A little boy I do not recognize stops and tells me that his “Grandpa had cancer too, but beat it and is still alive.”

I am sitting in stunned silence when "The Electric Slide" plays, the conga line explodes and Che grabs my hand and pulls me up for the final dance. 

 

She spins the wrong way each time the song calls for a jump, which sends us all into convulsions of dance floor laughter. 

Grabbing my hand before the song finishes, Che pulls me down the hallway, speaking and waving to friends and teachers, and outside where Sarah's waiting to drive us home.

Che jumps on her phone to talk about everything that had just happened to the same friends we'd left a few minutes earlier. 

A little while later, Che's settled for the night and I'm rubbing Sarah's feet as we talk and watch TV. 

I immediately fall asleep, hands still on her feet. 

"Go to bed," she lovingly prompts.

A few hours later, I'm back on the sofa, when Che sleepily meanders out and lays beside me. 

"We were the best dancers," she says before falling back asleep, now with her head in my lap. 

Salt water fills my eyes and I am humbly grateful that I got to do this, when the odds really are against it. 

I should just be thankful that I got to dance with Che like that one more time, when I shouldn't still be here at all, and I thank God for what could very well be my last dance.  

Here's the thing though. 

I'm determined as Hell to do again next year. 

_______________

I'm dying as happily as I can, but I think I can to better. 

See how by clicking the link this link 

https://gofund.me/ffda4f4b

Thank you!

Behind Sarah's Smile

 

It's been a jam packed, exhausting day and she's so excited to finish work, get home and collapse from exhaustion. 

I mean that's not what will actually happen. 

When she gets home we're so excited she's home that we demand everything at the same time as soon as she walks in the door. 

We need her so. 

But there's dinner to prepare (hopefully something I'll eat) and Che has to finish her homework, the laundry's not done, and she still has to meet a work deadline before midnight. 

At the moment though, Sarah can't wait to get there. 

Just to be home. 

And with us. 

Where the love is. 

"He has only been here for a few weeks," the Group Home staff person says to Sarah as she finishes her last work visit. 

“Does he have any family?” Sarah asks. 

The staff person leans in as if telling a secret and replies, “Yes, but his brother has cancer and couldn’t take care of him, so he had to move here.”

I don't know how she does it. 

But she does.  

"He's got cancer" the worker said and Sarah's heart cracks at the words, but she maintains her professionalism, and she finishes the job. 

Then she rushes home to cancer. 

I don't know how she does it. 

She really is a Wonder of a Woman. 

But she's not immune. 

"Trauma survivors often get in the habit of spending a lot of time alone, because alone is safe, relatively, anyway. Alone is controllable. We understand alone. We don't have to stress about alone."

Every woman wonders sometime, especially those surviving cancer in real time.  

Sarah stands there, hiding these things behind her smile. 

Cancer is trauma she's lived with a long time now. 

At home, she dives back into the blessed routines of the three of us, and somehow, though I don't know how, we find great joy together. 

"I'm a caregiver until he dies," I've heard her say, and I'm always taken aback at the reminder because it's coming sooner rather later.  

And there's no real rest in caregiving. 

It's 24/7 tangible expressions of love without ceasing until, suddenly one day it's over, I'm gone and Sarah has a whole other life to put together for her and Che. 

Her caregiver days come to an abrupt halt, she's suddenly a window with a young daughter, living alone, starting over, late in life. 

It's very much part of her thinking, because you have to have a plan, and Sarah is definitely a planner. 

Cancer is infused in every aspect of our lives, but when I go, I'm taking it with me, and then Sarah and Che will be free of its daily raping of our time, energy, money and opportunities. 

All of these things simultaneously rush through Sarah's mind, hearing the staff confide that his "brother has cancer and couldn’t take care of him ..."

She goes on, discussing the client's sad situation, and Sarah stands there smiling. 

But that's everything going on behind Sarah's smile.

_______________

I'm dying as happily as I can, but I think I can to better. 

See how by clicking the link 

https://gofund.me/ffda4f4b

Thank you!

My Grandaddy's Prayer

 

When Guy Sayles called me to go Seminary, no one was more proud that Granddaddy and Grandma Carver. 

During my 5th year of College, Guy calls me on the phone and tells me to come to Seminary and so I do. 

That's how I got "called". 

My grandfather, Ira Vernon Carver, was an uneducated man who loved learning, especially everything he could about the Bible,  and in his sixties is trying to teach himself Greek! He wants to read the New Testament the way it was written. He and Grandma are the epitome of good people trying to follow Jesus as best as they know how. 

When I tell them I'm attending the Southern Baptist Theological Seminary in Louisville, Kentucky, they are estatic!

"Our prayers have been answered," Grandma gleefully exclaims and I make a mental note to tell Guy.  

They visited several times and once I impulsively ask if Granddad wants to attend classes with me and he's beside himself with excitement. 

He dresses for it as he always did, wearing a white shirt, red tie, dark sweater vest and trousers.  I wear an old football jersey, jeans with holes in the knees and boots. He fits completely in with the other students making our way through crowded hallways. 

Dr. Dale Moody is preparing to begin his "Systemic Theology" lecture when he spies my grandfather beside me. 

"Who is our visiting dignitary?" Dr. Moody asks gravely. 

"This is my grandfather," I proudly announce, "Rev. Ira Craver, Rothwell Baptist Church, in Pooler, Georgia. 

I don't really care for Dr. Moody, having no idea why theology needs to be systematized in the first place. This is my second class from him and I'm not enjoying this one much either. So I'm completely unprepared for what happens next.  

"Rev. Carver," he beams broadly from the podium, "would you please honor us and lead the class in prayer before we begin?"

My grandfather is in shock and doesn't move. I stare at him and then at Dr. Moody.  The silence is deafening!

Dr. Moody strolls over to my grandfather and places his hand on his shoulder. 

"Rev. Carver, we are indeed honored to have a Minister who is out there doing the Lord's work, like you are, that I ask you, please lead us in prayer."

And he leads my granddaddy to the podium, turns him towards the class without moving his hand off my grandad's shoulder. 

And my Granddaddy prays. 

And I cry. 

An uneducated itinerant preacher leads us all within the hallowed academic institution of higher learning (at least it was in those days)in prayer. 

He was mostly quiet the rest of the day. 

He smiled, shook hands, marveled in the library, drank endless cups of coffee in the cafeteria but didn't have much to say.  

Back home he found Grandma and the two of them disappeared for a while. 

When they left a few days later, hugging and telling him I love him, he whispers in my ear, "Thank you."

It makes me cry now, writing this out. 

There was nothing systematic about that day but the theology sure was pure. 

I think about this now because my Mom reminds me of it, and she had told my Uncle Jerry (who's going through very similar stuff as me) and they decided I'd never written the story down and need to do it right now!

So they made me do it. 

But I've had the most marvelous time visiting with them again today, crying like a baby. 
___________

I had no idea how hard my celebration of life would be! Hear all about it at

https://gofund.me/ffda4f4b

Pushing Me Around

 

When I was on chemotherapy we went to Target, though I was much too sick to go but that's how we try to live. Act like everything's normal for Che even though it's clearly not. 

Sarah guides me to a shopping cart for "people in need" and we carry on. 

Through the thick clouds of cancer fog, I see people looking at me inquisitively.

"They're looking at my muscles," Sarah loudly laughs, pushing me down the aisle.

Che climbs aboard to ride with me. 

We forget about everyone else as I focus all of my energy on enjoying bing out with my family, and not throwing up. 

I'm no longer on chemo so I don't have to ride anymore, now strolling hand in hand with Sarah and Che. I'm slow and not always steady. When we're out, I'm focusing so much on "being in the moment" it seems I'm ignoring anyone or anything else. It simply takes all of my energy and focus to go anywhere, and I'm only good for an hour or so before I'm too exhausted and overwhelmed to carry on. 

Consequently, I don't get out much anymore but when I do, my focus is on Sarah and Che and not much else. 

Sarah asks if I want to go to Walmart with her and I'm up to it, so we make our way. 

It feels good to be outside, almost normal. 

I follow along as Sarah and Che meander throughout the store, a little overwhelmed by everything going on around me. People dart in and out of my view. Most are preoccupied with their own shopping, though some make eye contact and I either nod or look away. 

A lady pushes her husband in a shopping cart past me, stopping me dead in my tracks, and I sigh at the inevitability of my own frailty. 

At that moment Sarah grabs one hand as Che grabs the other, pulling me back into my safety zone. 

Shoppings done, we check out and make our way to the car. After we get inside, the woman pushes her husband to the car parked beside ours. We watch as she struggles to get him from the cart and into the car. 

"That's going to be us in four or five years," Sarah says. 

I burst out laughing. "Four or five years?!"

Sarah laughs and drives us to the safety of home.

______

I had no idea how hard My Celebration of Life would be but you can help at 

https://gofund.me/ffda4f4b

An Audience of One

 

It's hard to make friends when you're half dead in the grave, but I ain't dead yet and I got something to say. 

Lord Huron sang that and I couldn't agree more. 

Of course I've always had something to say and, well, I've pretty much said it all, very publicly. 

The time to say things is running out though, and I'm increasingly mindful of it. 

When I was first diagnosed with stage 4 pancreatic cancer almost 5 years ago, Sarah got me a journal to leave for Che. 

"The Story of My Life" is to be written by me, promted with questions to answer, so I can leave it to Che as a gift, after I'm gone. 

I dove in with great enthusiasm, finishing half. 

Then  multiple surgeries and chemo, made me stop and I haven't thought about the journey in years now. 

Recently, Sarah meanders into the room, pulls the book out, lays it beside me without saying anything, and walks away.

It's time to finish, she says without saying. 

Writing is much more difficult now for me. It takes focus and energy, of which I'm in short supply, and that which I do have, I spend on Sarah and Che. Sometimes there's enough left over to spend on other things. 

Reading again what I wrote when I was first diagnosed surprises me, because I'm brutally honest in everything.  

Now I mostly write for an audience of one. 

I'm getting ready for the part of her life that I'm not going to be as actively present. 

My time's running out and I have a deadline to make. 

________

Gift  My Celebration of Life

https://gofund.me/ffda4f4b

Die with a Smile

 

Sarah has us asking Alexa to play our favorite songs so we're singing and dancing around the dining room table. 

It's idyllic moments, laughing together and enjoying each other fully, comes to an end when Sarah gets a call and has to take care of business. 



Che asks, "Mind if I play a song?" 

Falling into the sofa, I tell her no."

"For you," she tells me. 

The music erupts from Alexa as Che positions herself across from me, looks directly at me with blue eyes the size of moons and she sings. 

"If the party was over 

and our time on earth is through

I'd want to hold you just for a while

And die with a smile"

I am stunned. 

Che's pouring her heart into singing directly to me. 

My eyes fill with salt water and I can barely hold myself together. 

Lately, Che's been asking questions about whether or not I'm going to be around when she's this age or that.

"Dad are you gonna be alive when I'm 15?

"I don't know Baby," I shrug. "I wouldn't count on it."

She's well aware that I'm not always going to be here. 

"I just want to hold you for a while," she sings, "and die with a smile". 

She explodes from the chair into my lap on the sofa and hugs me tight for a long time. We laugh, tickling each other wrestling.  

Sarah finishes her call and we move back to the table to be with her. 

Right now, I'll take living with a smile and after I'm gone, I hope she remembers each of them. 

_____

My Celebration of Life

http://gofund.me./ffda4f4b

Dog Love

You know how dogs can tell when you're sick, and they empathize, giving extra attention, affection and love?

Lainey is suffocating me with love and affection to the point she may kill me. 

For the last few weeks, she incessantly follows me everywhere. 

When I stop, she stops, and stares at me, until my next move. 

When I sit, she lays her head in my lap, and proceeds to slowly crawl up until I relent and give her a full-on hug and belly rub. 

If I lay down, she lays down, beside me, even down to sleep and the way she snores, it could be prayers to the Lord for my soul to keep.  

I don't know. 

I've fleetingly considered taking out a restraining order on her so I can get some rest. 

Sarah and Che see Lainey's obsessiveness and try to redirect her, which is easy, because she follows their every command lovingly. 

Colt, the foster puppy, treats me like he always has, gleefully playing around my feet, or happily kissing my chin. 

But Lainey remains obsessively, compulsively, zoned in on how I'm doing, and killing me with affection. 

"Dogs know when people are dying or grieving, through body language cues, smells only they can detect and other ways not yet known, experts say (Sue Manning).

Honestly, I don't mind Lainey's constant obsessions, because I know she's just giving me extra love to keep me going. 

She's constantly letting me know that she's here with me, and isn't going anywhere. 

It's the same with Sarah and Che. 

I don't know how they mobilize all of the extra tangible expressions of love during difficult times, but they do.

It's family love, which is an incredible sustaining thing, and something of a miracle. 

That's what's keeping me here. 

https://www.gofundme.com/f/manifesting-my-celebration-of-life?attribution_id=sl:420e6d5a-d672-47a8-b770-e72372904e09&lang=en_US&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link

My Celebration of Life

I had no idea how hard it would be to have my celebration of life now rather than later.

When I floated the idea, the response was overwhelming with suggestions, offers to help, and commitments to travel in order to attend one Hell of a Party, complete with live music, good food and drink in a spectacular setting with hundreds of people attending.

I would never survive!

Cancer's compromised my stamina, energy and focus to "celebrate" at that level for what's left of my life.

I'm easily overwhelmed and am very measured in everything I do and a gathering of such magnitude would be too much for me to even consider.

"Oh, don't worry," John O'Neill told me, "we'll carry you out."

"That's what I'm worried about!" I emphatically answered.

My life couldn't stand that kind of celebration.

Besides, it costs a lot of money to have cancer so party costs are nonexistent anyway.

I had 28 chemo injections, each costing $26,000, that Medicare covered, except for $1,600 which we had to cover.

$44,800 of living expenses went directly to keeping me alive, at the cost of the hopes, dreams and wishes I have for my family.

That's just one example, and there are lots more but the point being, it's damn hard to celebrate your life when all of your disposable income goes to what's not covered by Insurance.

Last year I ceased all treatment, wanting a quality of life even if it's at the expense of the quantity and, shockingly, I'm still here somehow, with a chance!

I have to make the most of this time before the quality runs out and I've thought long and hard on what my celebration of life should actually be.

I'm dying as happily as I know how, but I think I can do better.

My celebration of life will have 3 things I want to manifest before my time comes to its end.

An actually celebration would be nice, but what will make it most meaningful to me is to do it with Sarah and Che. They're the ones who bring the most joy, laughter and love anyway, so who better to celebrate my life than the ones who make it?  It will be a grand occasion in a grand location for as long as possible, because this is our last chance for such a thing to happen.

My celebration will allow me to leave something for Che, something I can give her at our grand little private affair in a grand location.  A fund that is set aside for when it's going to be needed and Dad won't be there to help. I want to make this a reality too because she's going to need her "Da" then and, well, this allows me to be raised from the dead for our love child, after I'm gone, in a real and meaningful way. 

Most importantly, Sarah has to start completely over without me. Burying your husband and starting a new life as a single mother is hard under the best of circumstances, but it's a bitch when all of your money's gone to keeping me this long. Some start-up money will definitely help because starting over is easier when you have something to start over with. 

That's the celebration of life that I want to have. It's certainly the one Sarah and Che deserve. 

This  Go-Fund Me drive is to help manifest my Celebration of Life and make it real for all of us. 

So many have done so much over the last 5 years of our ordeal, it's hard doing this but, we've always tried to keep it real and, well, this is real. 

We appreciate any prayers, wishes, hopes and donations offered that help us manifest my celebration of life.  

GoFundMe link