Hospice Music

 

Che is incredibly excited Hospice offers Music Therapy.

"You should do it Daddy," she smiles, hugging me encouragingly.  

"Not today," I sigh. 

I had the shittiest night, again, and I'm tired, irritated and trying to find the right thing to hold onto when Sarah strolls in getting ready for her own Doctor's appointments. 

"You should do it," she smiles, encouraging me. 

"I don't feel like it," I would have snapped if I had the energy, which I don't. 

Sarah's eyes lock mine and I see, I don't know, disappointment, and she returns to our bedroom to get ready.  

Che follows her. 

Feeling worse now, I sigh and almost yell, "Okay, let's do it."

Che runs back, dives in my lap, and is hugging me, thanking me and kissing me for relenting.

She is absolutely delighted that Hospice is coming to our house today!

I walk outside with Lainey, take an Oxycodone, smoke a heavy bowl and pray that the music therapy that I don't want, goes well. 

My therapist looks like a Hippy wearing a flowery shirt, jeans, guitar strapped to her back and a smile that makes me want to put on my sunglasses. 

Sarah and Che take a seat at the table while she sits beside me.  

Musical therapy is therapy first and music is just a way to get there. 

Today she scopes me out as I do her, through music. 

"Favorite Hymn?" she asks

"Poor Wayfaring Stranger by Sixpence None the Richer," I reply. 

"I don't know that!" Sarah yells. "That's a Christian Band.  You hate Christian Bands."

Our music therapist is looking up the song on her I-Pad. 

"They're not a Christian band," I say to Sarah. "They had that song 'Kiss me'."

"Yeah," Sarah laughs, "a Christian band. I listened to them in College."

"Thank God they did 'Kiss me' or I'd never heard of them," I mutter.  

Sarah laughs. 

Our musical therapist is still writing down songs to look up as we'd kept talking about Hymns, which led us to Bar Church (people looking for an open bar find a church in one with a Bar band) and the Hymns we sang there.  

She's all over it, jotting down every song Sarah and I discuss.

"'Knocking on Heaven's Door' as the final Hymn at Bar Church?" she asks with a broad grin. 

"I could never sing it," Sarah says, "but band leader Sam Adams would yell for me to sing a verse every week so I gave it my best."

"We could never think of anything else to replace it with," I explain. 

She coaxes me into playing it with her. 

"Next time I come, we'll jam together," she smiles, floating out like a Hippy on a mission. 

"Thank you Da," Che says, burying her head in my chest, smiling and hugging, "did you love it?"

I look at our Love-child, loving me intensely, intent I'm in need of therapy and using any means necessary to keep me engaged.  

Sitting at the table still, Sarah nods, smiles, and says, "it was good."

"That was fun," I return Sarah's smile and Che's hug. 

And it was. 

Because as Bob Marley taught us is "one good thing about music, when it hits you, you feel no pain."

                          🎷🎶🎸🎻

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

A Falling House of Cards

 

 

If it's not enough incorporating Hospice into our daily lives, we have a new medical emergency in our house. 

Sarah went to the doctor this week and the news was horrific. Her blood pressure over several days now is in hypertensive crisis range. Image of her back show chronic stress, inflammation and pain. She's entering treatment. 

We are shocked, worried and extremely dismayed as we make certain Sarah's taken care of at this very fragile time.  

So we literally stop. Pausing to evaluate what we need to do so that Clare doesn't lose both parents.

While the outpouring of love and people wanting to visit is nice, it is simply too much. 

The already fragile ecosystem that we have been able to maintain has shattered. And it is showing itself in very tangible ways through Sarah's health.

The irony being that my blood pressure and vitals remain perfect.

Sarah jokes about adopting some of my natural remedies.

Yet, somehow we are able to take our physical ill bodies to Clare's school for the most delightful international night. 

Che dances and sings with her friends as Sarah and I hold hands while gripping my scooter.

"Why do our bodies punish us so much when we are just trying to be good people?" Sara's dearest friend writes. 

We find ourselves pushing through this sentiment this week while pulling back into our safe little cocoon.

Hoping we can still find joy after we take time to reset. 

                         🌴🌴🌴🌴

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

I'm a Hospice Patient Now

 

The best thing about entering Hospice is pain management.

They are simply the best.

After the build up, execution and joys of a last Halloween celebration with Sarah and Che, I crash and begin intensely hurting for the next 6 days.

I hurt and can't walk, stand, sit, lay, or get up without stabbing shards of pain shooting everywhere. I cry, moan and wince.

Choices become easier when you don't have any, so I became a Hospice patient.

In no time, in home care was established, the pain comes under control, and plans are made on how we'll continue.  

Sweet and smooth.

The bad side of Hospice is it's a real mind game becoming a patient.

I sure as Hell don't feel like one, though I clearly met all the admissions criteria.

I can't deny being impressed that we're now totally equipped with every possible drug to treat whatever might cause me pain later.

I really like this safety net.

After two years of nothing but red wine and weed for treatment, my body is jacked being full of medicine again.

I'd forgotten about side effects and I've learned that there is a pill for every symptom.

It's crazy feeling medicine flowing through my body again after so long, but the pain is gone.

It's so much more emotional than we thought, mostly introspective, realizing the expectation is I'll be gone in 6 months (or they lobby I remain a patient or kick me off until I can come back on).

That's sobering.  

It's also not how we've done things to get us this far but we're adapting.

"HEY CHE!" I yell.  

"Yeah," she calls from her room.

"Will you bring me another Oxy?"

"Sure Dad," she happily skips out to get me one and chronicle the time on the board.  

It's a funny way to live now, but after a week of deathly nights, I'm still here, not dead yet, delighting in the moments I can still grab hold.

It's taken several days to work through the mind games that cancer, and entering Hospice, bring.

And now here, we are.

"Hey Hospice Honey," Sarah calls from the other room, "let's go out for lunch."

And we had the best time on my first date as a Hospice patient!

It was life giving, as we laughed and planned together.

We're still uncertain of all the rules, protocols and Doctor's orders being a Hospice patient means, but we're ready to live it up a little more, and so we're going to try, by incorporating what they bring to what we already do.

We squeeze every single shred of living out of dying so they'll be absolutely none left behind.
                           🌴🌴🌴

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

Dancing on down the cancer road

 

Five days in a row now, the pain has been relentless. 

After the glories of Halloween, where I dressed with Sarah and Che and I got to Trick-or-Treat with them one more time. 

To make it easy, Sarah got me a scooter, which I rode the entire time.

But a few hours, later I can barely walk.  

It hurts to stand. It hurts to sit. Laying down is excruciating. Getting out of bed is worse.  I moan out loud a lot. Everything hurts. 

Sarah and Che double down taking care of me. Their senses are stressfully high, all of the time.  

The pains lessen on occasion but are always there, ready to explode at any second. 

I've heard about the pain of cancer. 

People constantly ask me how's the pain and for the most part I've managed to avoid it, until now. 

I've started fantasizing about harder drugs. 

Planning suddenly seems desperate.  

Thanksgiving, Christmas and the New Year seem far away and unimaginable.  

"I'll get it dad," Che suddenly says, jumping up to grab something I've dropped, "I don't want to see you bend over."

Sarah has to hold me up and carry me as we walk Che one half a block to the school. 

The pain had become relentless.

So we called the pain management experts, Hospice, and I start immediately.  

I look forward to feeling no pain soon. 

Almost 6 years of managing cancer our way, we now need some help, and reached out and immediately got it. 

The next part of our journey begins.  
I hope we get as much out of it as we did the last almost 6 years.  
                            *******

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

One More Day

 

I did it. 

I had to ride a scooter to do it,  but I Trick-or-Treated the entire evening with Sarah and Che.  

We're all dressed as K-pop Demon Hunters.  I am Roomie, with purple hair.  

Sarah is a master make up artist, and we receive numerous compliments as we make our way.  

Che falls in and out with friends we encounter and she's having the time of her life!

I am so grateful. 

I got to do it one more time. 

Today, I can barely move. 

Sarah's struggling too, desperately needing rest. 

Che's happily dividing her most impressive haul!

Che was born on October 25, quickly followed by Halloween, Cassidy's birthday, Thanksgiving, daughter Laurel's wedding, Christmas and New Year's Day, which is when she believes her birthday ends.  

That's a lot of stuff and the expectation is I'll be at all of it. 

As bad as I often feel, I make no promises.  Well, except for Laurel and Rob's wedding. I plan to perform that ceremony.  

I do one day at a time. 

I wake, realize I'm still alive, can eventually pull myself out of bed, and live that day as aggressively as I can. 

If I wake up tomorrow, then I get to do it again. 

"Honey," Sarah asks, "do you think you'll be alive this summer? I need something to look forward to and found a nice cruise for us."

"What?" I laugh. "I'm working my hardest to be at Cassidy's Birthday, Laurel and Rob's wedding, and Thanksgiving now that Mom's coming, so it's hard for me to think beyond that right now."

"It's a great itinerary," she says enthusiastically. 

I shake my head and tell her to book it. 

She'll need a big break by then.  

In the meantime, I just want to wake up and be gifted one more day, and still have these problems.  
     
                                    *****

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

It is what it isn't

 

Staring at a gorgeous crackling fire on a moonlit Beach, I'm distracted, wresting against principalities, against power, against rulers of darkness. 

I went to bed at 9, had 2 and 1/2 hours of interrupted sleep because of prostrate cancer and countless trips to the bathroom, so now I'm up.  

It's 11:30, not even tomorrow yet!

It's not just the prostrate cancer, because my entire digestive system has been surgically reconstructed and there is no operations manual, and I'm certainly not in charge of when to go or not!

Regardless, the fire on a Beach on the TV as the night begins, calms me.  As do the candles I lit. This gives me a pleasant ambiance to spend the entire night in and, sometimes it seems Holy, Night.  

It's not a silent one because the music is cranked in my ear buds. 

I wake and bake.  

Then I sit beside Lainey on the sofa, sip coffee, and watch the whole wide world in my hands. 

But not tonight.  

Tonight, I'm fighting demons playing mind games with me just as the long night begins.  

They're relentlessly asking terrible questions that I can't answer and I find myself remembering C. S. Lewis' "The Screwtape Letters."

I'm trying hard to be quiet because Che and Sarah and sleeping soundly. 

Well, I pray Sarah is. 

I left her very unsoundly sleeping. 

"You'll be dead," the demons scream in the darkness, drowning out the cracking of the virtual fireplace, "they'll struggle without  you. And you'll be dead and can't do a damn thing!"

I think of Wormwood, winding things up inside your head.  

"If you'd hurry up and die, they can get on with their lives and stop spending all of their waking hours taking care of you!"

I have no response, so I turn the music up and reflect on the cracking fire on the Beach. 

"Fucking night demons," I mutter, forcing myself to eat an Apple Fritter Sarah got me from Publix.  

It's delightful, makes me feel better and so the demons grow quiet, though their questions linger in the air.  

After almost six years in my cancer journey is now mostly a matter of the mind.  

My body is going to do what it will, and I've accepted that, but the mind fucks are demonic possession at its worse.  

There's no demons of course, just the dark, unresolved, side of me screaming to be heard. 

It's just me talking to myself.  

"It is what it is," my Mom is fond of sighing, proving she is a stoic at heart. 

Except in my case, it isn't what it is. 

How am I even here still?

"Hey demons," I say, pulling myself off the sofa to pack Che's lunch and write Sarah's note, "seriously, fuck you."

I don't believe in sugar coating it and the Bible says we're to cast them out, so I'm cussing them out at the same time. 

Delightfully, I'm suddenly hungry and eat again. The rest of the day might be iffy. 

Che or Sarah burst out of the darkness, filling the room with a sleepy happiness that brings me back to life.  

The day begins. 

The demons lost. 

I'm happily celebrating because it's Che's 9th birthday and I never dreamed I'd still be here and yet here I am, because it is what it isn't.

I get to do it one more time! 

                             ______

       

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

A Future Ghost

 

The thing I can't get used to, is how quickly everything is slowing down, leaving me feeling like I'm dancing in glue.

I seem to be half a step behind on most things, but I try not to think about it.  

It's very noticeable to Che though, that I'm not doing things I did just a few short months ago.

Instead, she snuggles with me on the sofa, and if I move my hand from holding her leg, she reaches up without looking, grabs my hand and puts it back. 

She never complains, happily taking whatever she can get from whatever I have to give.  

She never asks for more. 

Likewise, Sarah cheerfully absorbs things I used to do around the house, as she plans for the end of this life we share, and the beginning of a new one without me.  

I struggle to do much anything.  

I still manage some things, filming TikTok's for others with cancer. I did a lot of press interviews in my time, learning how to talk in sound bites and delight in still using that skill every day.  

It brings me joy.  

I'm also on Twitter every day because I'm blessed to be part of a virtual community that makes me laugh,  though it's much more than that. Elements of Church and love are there, often blatantly in my face, as we enjoy each other, and this also brings me joy. 

I'm not doing well responding to direct messages, questions, support, offers and numerous requests for me to do something.

This used to be my life, managing and juggling the requests of hundreds of people at one time.

Now, they overwhelm me, often leaving me in tears, and Sarah and Che end up loving me through it, often at the costs of things they'd much rather be doing. 

Lainey still drags me on a daily walk, though they're becoming both harder and shorter.  Too many days I have to make myself go when I don't want to, and I find little joy in it.

I haven't quit yet but I can feel it coming, and that will be a very bad day. 

I used to be in the news, often was the news, but now I don't want anything to do with it. 

I ignore it all. 

Whenever I consider the craziness of the world, I smile, and tell myself, "I've loved every second!"

My very unique skill set, which helped accomplish so much, for so many, simply doesn't exist anymore.

I have nothing left to give. 

I've never lived like this before, often frustrating the Hell out of me because I think I can still do things that I can't. It's hard to not feel defeated when this is simply the way it is now. 

"Dad," Che excitedly smiles, disrupting these thoughts, "do you want to go to Walmart with me and Mom?"

I do not feel like going to Walmart. 

Che's eyes twinkle and I think to myself, "I better go. This could be my last chance.  I don't want to miss out."  

So I make myself go.

Halloween, immediately following Che's birthday, is a big deal at our house, so we're immediately looking at things that might be useful. 

Sarah pulls up a tee shirt, laughs and says, "This is perfect for you."

I erupt in laughter and sure enough we have to have it.  

"Future Ghost," it says.  

"Here's another," Sarah laughs, showing me. 

"Literally Dead."

We cackle in the aisle while people quickly maneuver around to avoid us.  

Life is very much one day at a time now.  

I don't make plans.  

I do enjoy Sarah and Che and we still have fun, though I don't know how with everything going on. 

Sarah still makes magic happen, getting us to a Savannah Banana's game, a Fall Festival and a shopping exposition. 

We had fun, but I feel those things coming to an end too, as they're more difficult for me than before.  

So we wait, joyfully taking the gift of another day together, making the most out of what we've got, while we've got it because, this is all we have left.

                     ________

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b

A Diabolical Twist of Love

 

"Is he okay," I hear someone in the crowd ask.

The crowd is thick, spilling from Grayson Stadium, seeking Banana players for autographs and pictures, or mulling around enjoying a beautiful night.

Sarah and Che are part of the crowd while I wait beside a flagpole.

The problem is I started off standing, but I've slid down into a sitting position, appearing sick, passed out or dead to some in the crowd.  

"There he is," I hear Sarah say, and I see her smiling face and bright glistening eyes coming quickly towards me.

Che's right behind her, loaded with an autographed baseball, gifts and pictures.  She's telling me I'm not going to believe who she saw!

They lift me up and guide me to the car, laughing about the night, and if sliding down the flagpole means anything to them, they don't mention it.

Two days later, it happens again.

Che's excited to attend the Fall Festival at the YMCA, so Sarah and I muster the energy to take her.

It's really a cool event for the kids, many dressed for Halloween, with face painting, food trucks, pumpkins, playgrounds and art.

Standing in line for Food Truck corn dogs, I feel my legs turn to rubber, and Sarah immediately puts her hand on my arm for support.

"Are you okay?" she asks.

"I need to sit," I mumble.  

"Can you make it to the car?

I nod, she gives me the keys, and I stumble the short way before collapsing in the passenger seat, frustrated as Hell this is happening twice now.

"Take a bite!" Sarah says, getting in the car, handing me a corn dog that I do not want.  

Back home I eat leftovers and we settle in for a nice quiet family afternoon.

Around 8 or so, I can't hold my head up anymore, am ready for bed, but I need to lotion Sarah's feet before collapsing into desperately needed sleep.

Rubbing Sarah's feet is the only tangibly way I can tell my wife I love her anymore, though I sometimes fall asleep in the midst of it. 

Getting out of bed a couple of hours after I got in, I count the four times I had to stumble to the bathroom. 

After making coffee, lighting a candle, finding a fireplace on a Beach on TV, and picking the right tunes, I sit on the sofa with Lainey and start to scroll.

I see "Electric scooter" and realize Sarah's shopping for me.  

I told her recently that I don't know how I can go Trick-and-Treating this year. Che loves Halloween and we've really done it up right the past few years, so Sarah's trying to figure out a way to make it happen one more time.

Strolling outside to wake and bake, there's a soft gentle rain washing everything clean and I stare for a long time into the darkness.

Back inside, I pour coffee and take my place beside Lainey on the sofa.

It's midnight.  

Sarah just went to sleep a bit ago.

The main reason I think I'm still here at all,  is because somehow, in a diabolical twist of love, both my wife and daughter are my full time caregivers.

There's no surviving without them, as day in and day out they watch me decline, and absorb it as normal in our lives so I don't feel bad.

We roll merrily along.

Except we're all running out.  

Sarah exhaustively plans for her and Che's future, while full time holding the present together, against impossible odds.  

I feel me holding them down, preventing them from so many things they'd rather be doing but can't, because they take care of me, without ceasing.

Sarah cheerfully picks up the long and growing list of things I can't do anymore, as I reflect on my diminishment.

I promised myself when I was first diagnosed that we'd never be surprised by death, and we haven't yet, in the most astonishing ways!

Now, I desperately want them to lay their burdens down, mostly me, and enjoy life, like the ways they make me absolutely enjoy life!

I hold my burden and look at it, reflecting on what's going to happen next.  

"It won't be long now," the Beatles joyfully sing through my earbuds, and I erupt in laughter, trying desperately to not wake the girls.  
                         *******

My Celebration of Life delightfully lingers but is coming to an end. Help me make sure Sarah and Che will be fine without me.  

Please consider being part of their future at https://gofund.me/ffda4f4b