Getting on with Life

 

I am experiencing cognitive disruptions," I explain to the Nurse, who's reviewing my symptoms.

I'm looking at Sarah, who's looking at me with a smile, as if to say, "You can do this!"

"Cognitive disruption," my Nurse muses.  "That's a good way to put it."

"Yeah, I'll be talking and suddenly, out of nowhere, I invent a new language to answer a question. I don't know where that comes from. Or I just space out and leave my body to travel to who knows where in the middle of a conversation?

"Disruptions a good word," Sarah adds. "Most of the time, he's fine but then, these things happen."

"They're growing in frequency," I conclude.

"Is there pain?" my Nurse asks.

Hospice is big on pain management, but I've already taken Oxycodone and it was upped to morphine. If there's more pain, Hospice will increase the dosage.

I was raised you stop taking medicine as soon as you take it so I keep wanting to decrease it, until I finally admit that I am no longer in complete control of my body.

I lost my voice last week and my volume is just above a whisper. Throw in some made up words or the country of Peru, and Sarah tries even harder to decipher what I'm saying when she realizes I'm not saying anything at all!

Our eyes lock and we share a silent laugh over what can possible happen next?

"So you good on pain medicine?" I'm asked again.

He leaves and the next day I get vertigo, which is where we are now.

Sarah sees him out and we ask Che if she has any questions, as she's quietly sat at the table observing everything.  

She doesn't but spends the rest of the day meeting my every need.  

The past month's taken a toil on my body.  My feet have swollen, little blood sores popped up all over my body and itch feverishly, so I scratch all day.  I can't walk beyond a short distance. And lost my voice.

"It's a lot to manage," Sarah smiles.  

"Yeah," I whisper.

"I don't want us just waiting around for you to die," she sighs.

I nod silently in agreement.

"HEY!" Sarah exclaims jumping up. "I finished your obituary. Want to hear it?"

"Hell yeah!" I laugh. 

Sara grabs it, sits beside me so I can see pictures, and we laugh and laugh, until it's time for us to get on with life.

                       🪩💃🎶🕺

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 with Symptoms

 

After hearing the symptoms of a pancreatic cancer enrolling in Hospice, it's easy to see that I'm no different from anyone else. 

We all share shortness of breath, pain, confusion and agitation. 

Personally, I think I only have 2 of these but, at this point, Hospice manages the pain, and I'm aware of how much it hurts when they're not, and they're doing a great job!

Neither confusion nor agitation have presented as symptoms yet, though Sarah and Che will disagree. 

I'm not like my Dad, who in his later years became a hypochondriac, catching every symptom he ever saw on television.  

I don't do that, though Sarah, Che and Hospice believe otherwise but, especially Hospice, or they wouldn't have let me in. 

The pain never really goes away, though, which is why the very 1st question they ask is, "What hurts?"

"Everything," I answer. 

And Hospice handles the problem, the pain is managed and I feel so much better. 

What Hospice doesn't tell you about pain management is that it's a moving target, so we're forever altering what medicines and the results are sometimes "hit and miss". 

There's no question I have a chronic shortness of breath. Most anything I do leaves me gulping for air, collapsing in a chair and frustrated. This is happening my abdomen is slowly filling with fluid. 

Complicating it is the dry, chronic coughing possessing me throughout the day, forever hacking with no real results. 

Cough is not the right word. 

"Your chest muscles are too weak for you to cough," my Nurse explains. "Don't try too hard," he smiles. 

"I couldn't if I wanted to," I shrug.

The next symptom is being contested by me because I can't believe it.  Apparently, I'm confused a lot and doing confusing things, which I freely admit. 

Sarah asks me a question and as I answer I realize I am speaking in tongues. 

Sarah's got that "What in the Hell are you talking about?" look in her eyes, and I quickly concede that was confusing.

Evidently speaking in tongues qualifies as confusion and I can't argue with it because I contest it until I understand it. 

This leads to the final symptom all pancreatic cancer patients are agitated. 

Even a laid back person like me. 

I say confusing things to others deflecting any expressions of anger. 

Take it all together and I clearly meet the entrance requirements of Hospice for pancreatic cancer. 

One Nurse explains that some pancreatic cancer patients survive as much as 5 years. 

I'm getting ready to pass six. 

Sarah constructed a way of living thah's got me this far and we're struggling with the influx of medicine and professionals mixing with our way of living, which clearly

worked for us 

Then again. 

I'm in Hospice. 

Things have changed. 

                           🌴🌴🌴

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

The Last merry little Christmas

 

 Just a short month ago, when I took Lainey, our Dalmatian, for a walk, she'd drag me around and if I fell, she'd lick my face until I pulled myself back up.

Today, I stumble to the scooter Sarah bought and drive pulling Lainey behind.  I can't walk it anymore even though she drags me, should I get out and try to do anything. 

It sucks.  

After almost 6 years though, I've grown very comfortable that today is my last, and I better make the most of it while I can.

It's the way I think now.

If I wake up at midnight, a couple of hours after I went to bed, and as soon as my eyes open, I think, "I get to do it again. Every day's a gift and I have today!"

No thought whatsoever is given to tomorrow, or next week, because there is only today. 

It's Hell on planning because it's really one day at a time.

We're asked to do things or see someone, and our response is always, "Check with us that day because he may be too sick to do anything. It's one day at a time. Today's not that day."

We say that a lot because more than often, whenever plans are made, they don't happen because I can't handle it. 

Home becomes a prison for Sarah and Che, constantly caregiving, ever watchful of my decline and nervous because it can all end at any second. 

I realize how blessed a man I am. 

We’ve endured anything and everything that cancer could throw at us, and it's thrown a lot.

"How is your husband still alive?" a client Sarah's visiting asks. 

"I don't know," Sarah smiles exhaustively. 

I certainly don't know. 

For almost 6 years I've lived with cancer and have absolutely made the most of it! We celebrated my life when we wanted, not waiting on me to die first.  

All of the things we've done during this time was nothing short of a long series of miracles orchestrated by Sarah. It's been good. 

Now it's  just living today, one day at a time, the best I can and that's what I try to do. 

It's got its challenges because my mind gets cloudy, I'm easily confused, I'm always freezing and I keep losing weight because I can't bring myself to eat. 

Sarah weighs more than I do, easily picks me up or holds me up as I try to walk, so at least I'm lighter for her to carry 

Right now, I'm trying my very best to not die until after Christmas and New Year's because Che would have to carry that forever. 

We don't have it in us to do much for Christmas Day. It will be an intimate, holding hands under the table, sort of whatever Christmas is going to look like. 

I'm excited for it, in spite of the context, the cancers, and a mysterious timeline as to when. 

I'm excited for the future I won't be here to share with them. Sarah and Che talk about where they might live, who's nearby, and the places they're going to visit. I love listening to them talk about it. 

Life goes on. 

That's our holiday, a merry little Christmas with no rhyme or reason, other than a family desperately hanging on to one more day. 

                     🎄🌲🎄🌲

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

Raining on a wedding down a dirt road

 

Living until Laurel and Rob were married has been the goal, especially since they asked me to conduct the ceremony. 

I am beyond myself with both the excitement of doing our daughter's marriage, and the fear that I will face plant walking down the aisle.

Laurel made it clear, my job is to stay alive and not get caught up in the details of wedding planning. 

She checks on me often to determine I'm still physically capable of even doing the service. 

Two weeks before the wedding, it's touch and go for a week when everyone, including me, are convinced I'm dying and happen any time now. 

"He has this incredible knack for being able to come back," Sarah says, and, so far anyway, I do.

We quickly enroll in Hospice, get the pain under control and it takes a couple of weeks before everything's working right, just in time for the ceremony. 

Laurel and Rob's wedding takes place in a beautiful wooded area, complete with benches carved directly from the trees we stand under.  

It's been raining for 2 days but neither Laurel nor Rob seem concerned and, sure enough, the rain stops just as the wedding begins. 

Rob, the epitome of a handsome groom, follows me out, then the flower girls and ring beater. 

I ask for all to stand as Laurel makes her way to the aisle, gorgeously smiling, radiating loving pride. 

Per their request the ceremony is short. 

"Dearly Beloved," I smile, "we are gathered today to unite Laurel and Rob in holy marriage. 

Family and friends stand or sit by the hand carved pews, standing or sitting as large raindrops fell from the pine trees overhead. 

Everyone is smiling. 

"Rob," I say, "do you take Laurel to be your lawfully wedded wife?" and I proceed to continue leading them through their vows. 

It's all good, until I ask "do you take her in sickness and in health," and as I ask, my voice cracks and salt water fills my eyes. 

In front of God and everyone else, trying to collect myself, I feel Laurel's hand on mine.  

I look up and her eyes lock mine. Rob's too. Laurel smiles beatifically and, as I'm able to finish the wedding, she places her hand back in Rob's. 

It was the holiest of moments.  

Afterwards, Sarah and I danced as it's the last chance we're ever going to have, likely soon.  

Che grabs me and the two of us dance as people in love who'll never see each other again. 

We have a large blended family with 7 kids, all there for Laurel and Rob. Sarah's parents, our sis-in-law Julie, our nephew Colin and his finance Sophie, along with Jeremy, Kristen and Chelsea, round out our table. We spend time enjoying each other as the wedding dissolves into one killer party. 

The dancing, drinking, eating and playing take over and it's time for me to go. Sarah's folks drive me, and Jeremy comes along for the company. 

Sarah, Maddie, Henry and Cassidy continue to take care of the party when they are not partying, squeezing every bit of joy the party. 

Jeremy and I watch the end of the football game, but I'm too exhausted to continue and collapse into bed. 

I'm so damn happy I made the wedding. It's some of the happiest moments of my life.  

"Well," Laurel asks before I leave, "now that the wedding's over, what's the next thing to focus on so you don't die? Christmas?"

"I can't die at Christmas," I say. "That would scar Che and the holidays would never be the same."

"Till after Christmas then," Laurel smiles, before leaving to dance with Rob.

"To Christmas," I toast. 

"And to love," I add, stumbling towards my ride home. 

                       💍💍💍💍

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

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