A Sailing Celebration (of Life)

 

Sliding into the unexpected warm salt water pool, I hear Che squeal in delight before I fully submerge. 

And for a second, maybe it was a thousand years, I float, safe, secure and happy, as others kick and splash above me.  

As soon as I break the surface to breath, Che body slams herself into mine, and we swim together laughingly.  

Sarah smiles sitting poolside watching. 

It's been a long couple of days getting here again, cruising away together, and we're as tired as Che is excited. 

Looking at Sarah just before I slide into the pool, I sigh, "Oh Che don't make me do this" because honestly it's the last thing I feel like doing. 

Sarah nods, I slide and Che squeals. 

The magic moment, floating there in a womb, ready for what's coming next and we spent the next hour swimming, hugging, splashing and laughing. 

It's an idyllic beginning.

Reality quickly reclaims it's throne as overly excited Che wants to do everything on the boat at once, while Sarah and I are ready for bed!

Two days later, we crash. 

It's hard to leave the room, though we manage several excursions, but are mostly content to watch the deep blue Caribbean Sea outside our cabin.  

My celebration of life now, rather than later, is going as beautifully as I could have imagined, squeezing every bit of love we can out of these moments. 

As far as "Celebrations of Life" goes, this one's kicking off just fine. 

                          ******

If you'd like to help part continue to it's end, just hit the link.  https://gofund.me/ffda4f4b

Not Forgetting How to Live

 

Sarah says I was hard enough to love before I got cancer but I'm far worse now. 

She laughs as she says it though the words convey the truth. 

Making it worse, she'll continue caring for me until I die, while planning a future for her and Che without me. 

Throw in the idea to celebrate my life while I'm still here with them, and killing a funeral for later on, it's up to Sarah to do all of the planning, which she does, and then has to drive us to the places we go. 

That's a lot of work. 

I hope it's worth it. 

Planning for our cruise, our cancer specialist calls for a quick review of how I'm doing. 

Sarah and I hold hands. 

It's a fun conversation. He asks about Che.  Delights in the cruise. Checks how Sarah's feeling about things.  

"It's refreshing how honest you are," Dr. Starr says. "People forget how to live when they're going through this."

Sarah and I nod. 

"Living well is the best revenge," he muses, stroking his beard and staring off for a few seconds. 

Arranging to call back soon, we congratulate each other and hang up. 

Sarah and I smile. 

Later, Lainey's dragging me for a walk (we call this exercise in our house), and Sarah texts me Dr. Starr's official report. 

"Michael has a good understanding of his current situation and is at peace with his current decision. He is living his best life and it is really refreshing from my standpoint."

I think I do have a clear understanding of things. 

Sarah, Che and I get to do it again!

That's all that matters.  

Living my best life while I'm dying.  

Just not yet. 

It's time to celebrate our life now!

Who care's about later?

                            ****

If you'd like to contribute some drinks and arcade money to the celebration, just follow this link. 

 https://gofund.me/ffda4f4b

It's Time to Celebrate

 

It's hard enough having lots of cancers and watch tv when, regardless of the show, someone has cancer and dies.  

It's hard for me to get excited about that kind of entertainment. 

Plus, I have little control of my emotions anymore and cry over most anything now. 

Watching a movie with Sarah, huge tears rolls down my face and I have to leave the room numerous times to collect myself. Needless to say I'm don't watch many movies anymore. 

It's often the same scenario when we're out in public. 

Too many social interactions leave me emotionally exhausted and physically drained, which leaves me with no energy for Sarah and Che.

We go out when we can, often forcing ourselves to, because it's safe inside the bubble we've built in our home. 

Wonderful friends offer to visit, take me out, on a road trip,  or even set up a band in the front yard for a live concert (which was done when I was first diagnosed with pancreatic cancer). 

As marvelous as each of these are, the truth is I'm not emotionally capable of managing them much anymore.  

It puts the onus on Sarah, who's already exhausted from 5 years of chronic caregiving to me, working full time taking care of 20+ Developmentally Delayed persons, and full time parenting, so we mostly stay inside of our bubble, even when we're out. 

Life in our Bubble, as we call it, keeps me functioning a near normal life, most of the time. 

It can get depressing and Sarah and I spend a lot of time talking about how NOT depressed we are!

"It's time to go," she announces, "and get this celebration of life back on track!"

Second grade ends for Che next week, a great milestone to celebrate, so we're taking the bubble on the road. 

Actually, on a boat. 

We sail on a Carnival cruise into the Caribbean!

I'd prayed there'd be the chance to do it again, with the Wonder of a Woman and our Love child, who keep me very much tethered inside this realm! 

It's time to celebrate them!

And the fact that I'm still here to do it with them. 

So for the first time in a long, long time, we're beyond excited and thankful as we party like it's the end of the world!

                          ****

If you'd like to help this celebration be everything it can be with drink packages, arcade money for Che, gambling money for Sarah or a special treat, no one deserves it more than them. Just click this link 

https://gofund.me/ffda4f4b

Caregiving through your Birthday

 "What's wrong? Sarah asks, standing in the dark hallway, staring at me with wide eyes. 

I'm nestled on the sofa, waked-and-baked, surfing the Whole Wide World in my hands, listening to good music, in the soft glow of a fire burning on a beach illuminating from the TV. 

"Nothing," I smile. 

She rubs her pillow hair, yawns, "I was dreaming" and shuffles back into the darkness to bed. 

It's only 5 in the morning. 

It's bad when your caregiver dreams about caregiving. 

Of course, I do lots of things that keep her up at night.  

Covered in pollen, I lovingly wash the car for Sarah, so it'll be nice and clean when she leaves for work visits. Everything's great, until I forget to put the windshield wipers down before slamming the hood shut. 

Somehow, she manages to put them back in place and functioning before leaving for her appointments. 

A few days after, I'm happily weeding around the oasis of a backyard Sarah's put together for us, and toss the hose in the pool to move patio furniture. 

"WHAT THE HELL HAPPENED?" Sarah screams 4 hours later when water's overflowing the back yard and our perfect pool looks funny. 

"Shit!" I curse to myself, happily laid out on the sofa with Che. 

Hours later, after Che and I are asleep, Sarah finishes reassembling as best she can, the stretched and slightly caddywampus pool. 

She's sore as Hell the next day but does manage to give me the finger. 

These things bother me so I pull myself off of the sofa to resume self-medication and reheat my coffee and, turning on the light above the stove and see Sarah's note. 

"Did you turn off the stove?" is written in dark blue letters on a soft blue paper and taped on top of the clock. 

Recently I do fine cooking, but apparently there are concerns over me making sure everything's shut down when I'm finished, so Sarah made me this reminder. 

No wonder she dreams about what I  may be doing because lately these are the things I've been doing. 

It's Sarah's birthday and, she's tired.

It's also Mother's Day and, she is tired. 

Che and I are baking a cake that Sarah bought for the occasion(s) last week. 

She planed it out because she knows that's pretty much all I'm capable of doing. 

What can I do, except wish. 

Happy Birthday Sarah!

Happy Mother's Day too!

You're the gift that keeps me living, fills our home with love and laughter while holding us together and believing in the future we still share. 

_______

You can celebrate Sarah too with thoughts and gifts via 

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Our Celebration of Life

 

A typical day in the Celebration of my Life begins about an hour after I go to sleep because of prostate cancer, and it takes forever to pee in the dark. 

I return to bed and the episode repeats itself two or three times before I curse God like the Prophet Jeremiah did, get up and shower.  

Lainey's waiting for me on the sofa when I stumble through, heading outside to wake and bake while the coffee brews. 

All is calm. 

All is bright. 

The silent night drives me crazy!

Back inside, I search YouTube for  a burning fire on a Beach to give the room a warm glow, stick AirPods in my ears, find my tunes, crank it up, grab my phone and I've got the whole wide world in my hands.

The first sip of coffee is still something to die for.

Pausing, I look at the flickering lights from my virtual fire, and collect myself. 

Fifteen months after stopping treatment for pancreatic cancer, I have far exceeded anyone's expectations. 

Now the pressures really on to keep it up!

"I really think," Sarah tells me over a nice lunch, "you are going to live forever and I wasn't really ready for that."

Bursting into laughter together, I shrug, "Yeah, I think you're right."

I think about Moses getting to see the Promised Land but never able to enter. 

I think I'm in the Promised Land and will eventually see it, in my rear view 

I focus on the now and try not to think about the future. 

The future will be different, if it's anything at all. 

But in some crazy way that I don't understand, I'm not frightened of it.

Hell, I can't wait to see what happens next!

If there's anything to see. 

It doesn't matter. 

Life is a gift that none of us asked for but everyone got. 

Maybe there'll be other gifts but to spend time hoping and praying for more takes a lot of energy and focus away from the marvelous present I have now.  

That's all that matters.

"DA!" Che calls from her room, finally waking up. 

Rushing inside, we snuggle as she stretches. 

"Pool today?" she suddenly asks, blue-green eyes popping wide open. 

"Yep," I laugh with her and our day begins. 

Because so many have invested in our Celebration of my Life, Sarah's been crazier busy than she normally is! 

Let's be honest, caregiver love is the most amazing love. 

Anyway, after work, she's gone to work and built an oasis for us to enjoy the summer.

Here we are!

Baptizing ourselves in now. 

Because that's all we've got. 
_________
Thank you all for making it a party!

                             ****

____________________________

Post Celebration planning is already underway at https://gofund.me/ffda4f4b

My Fifth Year Anniversary

 

Five Years is a long time to survive. 

"It's pancreatic cancer," we were told for the first time on April 17, 2000. 

It was devastating and, as best we could, we prepared ourselves for the worse. 

The overall five-year survival rate for pancreatic cancer hovers around 13%. 

If the cancer has spread to distant organs, like mine, the five-year survival rate is only around 3%.

Say what you will about me, I'm a survivor. 

So far anyway. 

I am a very different person than I was when first diagnosed. Multiple surgeries, 3 years of monthly trips to the Mayo Clinic for chemo injections left me scared and changed. Energy and focus became precious commodities and a "people person" quickly learned he can no longer "people" like he did before.

The images and feelings since my diagnoses are a jumbled, ever spinning kaleidoscope that pass by so quickly I can't grab hold of to really remember. 

The one that stays with me though, is from after the big surgery, the 10 hr Whipple. 

There's a picture of it. 

I get up to walk. Sarah and a nurse pull me out of bed to stand. IV's run through my arms and I hold onto the cart with one hand, and Sarah's hand in my other. 

She pulls to the future. 

Fast forward to me today, defying death by smoking weed, sipping wine, petting Lainey who keeps constant vigil over me, incredibly humble and most thankful to still be here. 

Che's at an after school play date. Sarah's helping Laurel with foster puppies. 

I have these moments to give thanks. 

I no longer question it. 

I was referred to as "the man who wouldn't die," recently and it made me smile. 

I'm thankful every single day, when I open my eyes, that I get to do it one more day. 

Day by day by day. 

                         ***

Having the celebration of my life now! Be part at https://gofund.me/ffda4f4b

Thank you!

Just Another Day

 

"Sorry Dad," Che says in the darkness, "I'm just checking to make sure you aren't dead."

She's pinching my big toe to see if I'd dozed off on the sofa or died. 

Waking, rubbing my eyes and grabbing her into a hug, I laugh, "I'm not dead yet!"

Che grabs her phone, wraps herself in a blanket, cuddles beside me, surfs TikTok and wakes up slowly. 

I've been awake since 2 am, and it's rare I dose off, but I did, and Che assumes the worst, only to immediately accept, and celebrate that life as we know it, goes on for another day. 

I marvel at her "take it as it comes" approach to whatever she encounters. 

"Oops, Dad's either asleep or dead," her thought process goes, "I better find out which?"

AND SO SHE DOES!

She's just as pragmatic when I wake. "Oh good! You're alive! Let's cuddle!"

And we do. 

And I feel her skin on mine, listening to her breath, the loveliness of her laughter, and I resolve to always feel as I do now and never forget the love. 

I wonder where the memory goes when I go?

Lately I've come to think I go back to whatever I was before I was born, though I have no idea what that means. 

It makes sense we revert back to energy, which it seems, never dies, so maybe we got the story wrong about what's life after death. 

Energy sounds nice.  

I have so little of it these days. 

It excites me to think that's what I'll become when I die. 

Cleo, the foster puppy, barks and Che and I instantly jump up to take her outside. 

Sarah rushes out of the bedroom at the same time, and we get busy, taking care of business, tending the dogs, getting dressed, making breakfast and sharing our plans. 

It's just another day. 

Thank God!

And tomorrow I hope I get another one because, there's no day but today. 

_________________ 

Thank to so many wonderful friends I am actively engaged in my "Celebration of Life" NOW, rather than later, with Sarah and Che. We are eternally grateful for you. 

Oh, they told me

 

I'm having glasses of boxed Cabernet Sauvignon from Walmart and a bag of boiled peanuts for dinner. 

It is a superb culinary  experience. 

5/5 Stars! Highly Recommend. 

The before dinner Weed really cleansed my taste buds, and I'm sitting outside listening to Audra Mae sing me promises. 

"Oh, they tell of a home," she sings, "where no storm clouds rise."

Yeah, they've told me too. 

They told me to believe in Heaven, where everyone I've ever loved, will welcome me when I die, and that includes dogs, I was led to believe, in that lovely land of unclouded days. 

I've been told lots of things that no longer hold the meanings they once did. 

In Seminary they told me all sorts of crazy things that I just laugh at the silliness of it. 

In Preaching class, Dr. Alan Graves told us to keep our socks pulled all of the way up when we're sitting on the stage, waiting to take the pulpit, lest a woman in the congregation be tempted by my exposed ankle, and lust right there in the middle of the service. 

I didn't believe it then, and  now I'm an unbeliever of many things I learned during my very "Clouded" days of Seminary. 

Over the years, I've slowly and, painfully, whittled down everything they told me into the few things I believe. 

I believe I'm going to miss it when it's over. 

Even with all of this cancer and these struggles, it's still most the most wonderful thing being here at all.

Life's a gift each of us receives yet none of us asked for, a gift of grace, however it happened, and it's been, and still is, the most wonderful present I could possibly imagine. 

I believe I know love when I see it.

Like life, love's also a gift none of us asked for, yet everyone got, at least in various degrees, but in my life, I've been blessed with a lot. 

It touches me every single day as Sarah takes care of everything, so I can focus on enjoying life. It's an oppressive, tireless and overwhelming job she does day after day to make "me" possible. 

There's not much I can do to lighten her load, and meet her needs like she meets mine, but I see what love looks like and, it's empirical evidence. 

So Sarah is the personification of love, exhaustively moving forward, every single day, and I struggle to accept that this is Heaven on earth. 

I believe, having learned through very hard experiences, some which almost killed me, that everything comes to an end. 

Good times we wished would last forever don't. Bad times don't either. All things must pass. 

Everyone we ever loved dies. 

Yet, I believe that love never dies. 

It's something they told me a long time ago. 

Faith, hope and love abide, these three but the greatest is love. 

And love never fails. 

I see that now. 

Every day that I'm still here. 

I still believe in love. 

I don't know what that means after I die, but I see Sarah live it every day and I do my best to give it back. 

Love keeps me alive. 

I believe in Angels, primarily because I know so many. 

They don't look or act like Angels, at least not like we've been told, because they're just like you and me, doing holy and righteous things as we can, little embodiments of love in real time, making my life easier and stoking my love. 

I see Angles climbing up and down Jacob's ladder on an every day basis, so I believe. 

And I believe there's always a "next", because if life has taught me anything, it's that as things naturally come to an end, there always seems to be something completely unexpected that happens next. 

That's my life experience!

Failed marriages and terrible relations made it possible for what came next, an incredible wonder of an Angel Woman, our Love child and more love than I could have ever imagined! 

It came next.

Not first.  

I believe there's always a next. 

Sarah brought me these boiled peanuts as a surprise gift, and as far as I'm concerned they're the Body of Christ, chased down with Communion wine, and if I were going to tell you anything, I'd tell you the things that I believe.

___________________________

Having the celebration of my life now! 

Be part at https://gofund.me/ffda4f4b

Thank you!

Living and Dying in Real Time

 

"DA!" I hear her call in the predawn darkness. 

One of the great things about being an old man with this much cancer is, I'm usually awake at times like this. 

Moving as quickly as I can, which takes forever, from the sofa to her room, moving like some kind of ninja super hero, I'm sitting beside her on the bed before she calls again. 

"Good Morning," I whisper. 

"Daddy, I had a bad dream," she cries, hugging me tight. 

"It's okay," I say, hugging her back. 

Che catches her breath, lays back on the pillow and looks at me. 

"What was it?" I ask her. 

"I dreamed you were gone," she answers, large tears welling in her big blue eyes. 

"Oh pa-leeze," I grin, tickling, hugging and kissing her, "I'm right here.

And then everything's fine. 

Che rushes to hug Lainey, plays with the foster puppy,  desperately needs Sarah to get dressed for school, all the while dancing, singing and smiling. 

And that's how the day begins. 

"Dad, remember that dream I had," she says, holding my hand, walking home after school."

"Yeah."

"I thought about that at lunch today."

"Oh yeah?" I answer, truly shocked. 

"Yeah," she says, looking at me smiling. "That's all."

It's hard to not get caught up in these precious moments but, Holy Christ!, that would be the death of me.

So I don't get caught up in them.  

I get high instead. 

The rest of the day's spent having fun, waiting on Sarah to get home from work. 

When she does, we walk to the Mexican dinner around the corner, and then stroll to Leopold's for ice cream. 

It's a perfect family time, save for the Mexican restaurant completely botching Sarah's dinner. 

Today, Che's obsessed with how much time I'm spending writing "The Story of my Life", that I'm leaving for her after I'm gone. 

I'm not even finished with it but the kid watches me writing, coloring, pasting as I write and she's knows it's for her and, she can't wait. 

"You're killing me," I tell Che twenty times a day. 

She laughs. 

I appreciate the irony.  

Over the years, many friends have shared Tim McCraw's song "Live like you're dying," which is a challenge to make it a way of life. 

It is at our house.  

____________________________

Having the celebration of my life now! Be a part of it at https://gofund.me/ffda4f4b