How to Live Like You Are Dying, Part One

From the MealTrain Archives

I’m finally back to writing! I wasn’t up to very much writing over the last few months. Felt blocked, broken. Since I last wrote to you, I got solid time to make some powerful and fun memories with my boys and Mike. I keep working to find the balance in all things that bring me joy.

It’s been a roller coaster and a poop show and also an incredibly precious time that I’ve spent away from public speaking and my passion projects (which are primarily activism related to protecting kids from politically-driven mandates) in order to prioritize and balance pressing health and family needs. Plus, I’m just plain exhausted some days. I’ve had nothing to give besides limping through election season.

👀👀 [DISCLAIMER] All my writings, social media and other communications shall in no way be deemed to represent my position in my role on the Medford Township School Board, nor does any of my written or spoken private opinions represent any opinion of the Township or District.

Seeking any measure of comfort, I have found solace and purpose in the intentional creating of memories, seeking peace in all things, and making deeper connections with my most intimate relationships, especially my Angel of a husband (of course his name is Michael), and my other best protector, my mama Cathy (Mammy to the grandkids).

Even with all I have working in my favor, it’s still a bummer to be in treatment for life! You see, I was finally freed from struggle to end the forced masking in schools that Brody endured in exchange for the “free” and appropriate public education for Brody. I could relax, take time off the volunteer role to refocus on my health and family. Just three months after the March 2022 mask order was lifted came the devastating diagnosis. Once again I couldn’t breathe, couldn’t rest, but had no energy to run this time.

My life was just over, again. This time, I had the mind-numbing statistical probability of receiving a diagnosis that carries an average death rate of 80% by year 5.

20% chance not dead in 0-5 years.

Saddle up, mama, we got some chemo to do.

I am up to 9 rounds of Enhertu.

Also in the span of about 5-6 weeks, I caught Flu A, pneumonia, and Covid; received two treatments; visited Virtua ER on Carson’s 5th birthday, and generally had bunch of other annoying tri-monthly medical scans and tests to accomplish in order for my insurance company to continue to cover the very new, expensive and miraculous medication that is fortunately approved and available in the greatest country ever, America.

Fun fact: My Pulse-ox rate went down to 78% on the mask while I was in a bed. Great intervention! I tested Covid-negative that visit but they still insisted on the face diaper. I needed to comply for the pneumonia meds. Cut me a break!

Side Note: Women like me are still waiting for approval of Enhertu in CANADA, they are being sent home to die. THAT is the truth about government-run medical care. I will take the American system, hands down. At least give me the right to try!

Point of this all: I was ready to give in to the crush of unending, chronic trauma of life as Stage 4 patient and just hide in my house and hug my babies. I felt inadequate everywhere, so I didn’t want to go much of anywhere. And I didn’t. I couldn’t.

The road back was longer this time. I’m still not on wholly solid footing.

But I decided what I can give is enough. I’ve got some pitches left to make. I’m not done being “Kristen aka Kristen’s in Charge”.

And even more than I want to have that magical picnic basket day, that slow walk alone with Mike on Poipu Beach In Kauai where we got engaged or take my mom for her first craps roll in Vegas, Disney with my boys…

I want the regular days too. Thousands of them.

I’m going to fight for more living, because my sons deserve to remember we kept fucking going even when we got our teeth kicked in, again. I’m writing this part of the story, not cancer or sadness or bitterness.

I have nothing but gratitude for every single day of my stupid little life.

I am “stable”.

I’ve been doing the work to live, again. I love takings moments to slowly walk through each day, leisurely choose when I come and go, and squeeze in a text or call to remind one of you of my gratitude for each of you who have supported us through the most devastating moments, words, and unspeakable burdens we carry as silently as the suffocating air would allow.

See that word again? It’s the gratitude. It was the only way back so I could get busy livin’ and stop waiting for the real dying to start. I stopped ruminating, started saying yes again to planning, even without a firm grip on long-term hope.

Some of you are still unhappy too, I see it.

So once again, I’m asking you all to do something with me.

What am I gonna do? And what do I promise I’ll do for you?

Well first, you need to read the backstory, part one. Otherwise it’s not as good, trust my readers.

Here goes. Get ready, it’s long. Leave me your comments and get ready for Part Two!

From the Mealtrain Archives:

Taking stock & Finding joy

Posted Dec 26, 2019 by Kristen Sinclair

"I went skydiving

I went Rocky Mountain climbing

I went 2.7 seconds on a bull named Fumanchu

And I loved deeper

And I spoke sweeter

And I gave forgiveness I'd been denying"

And he said

“‘Someday I hope you get the chance

To live like you were dying’

Live like you were dying-Tim McGraw

I started 2019 with all the confidence (arrogance) of a “successful” wife and mother and attorney you can imagine, considering my laissez faire attitude toward my mortality and hubris in daring cancer to strike.

I got gut-punched. I couldn’t breathe at times from the anxiety. I can’t enjoy certain songs and books and movies right now, they just strike too sensitive a chord. I don’t need a trigger warning; in fact, I f*cking live for dark humor cancer and death jokes. Bring it on!

But do not try to make me watch Bambi! Read I’ll love you forever out loud? That’s like inviting me bawl. Damn Disney forcing all these hard discussions!

Still, I find words and songs and movies to be a release, an opportunity to mourn for someone else, and myself, at the same time. Misery loves Netflix and Grubhub.

Since a very young age, like many kids, I gravitated toward song lyrics and movie quotes as the medium I used to voice my feelings. Certain songs help to clarify and vocalize the emotions bubbling under the surface.

The first “maybe I’m about to get diagnosed with cancer’ song I played for myself was the Tim MCGraw classic, “Live like you were dying”. The powerful images evoked by the lyrics naturally encourage the listener to weep melancholy tears and use the anthem to cope with an impending diagnosis with potential for death.

Before I knew for certain that turning 36 in 2019 meant I would spend the entire year, and half of the next year battling a terrifying disease, I used my few moments alone each morning to sing loud, choke out a few tears, then face the day with composure, focus and purpose.

As the diagnosis was confirmed, and treatment plans were made, I sought other sources of inspiration on how I would live and thrive, regardless of the challenges I had in my future. I read and re-watched some famous speeches from the greats: Jimmy V, Stuart Scott, Craig Sager, Jim Calhoun. It didn’t matter that 3 out 4 of these men eventually passed away after valiant battles. Their energy, grace and courage were sources of comfort and inspiration. The four benevolent horsemen of the cancer apocalypse became figures of comfort and role models.

My song next became Oasis, “Maybe”:

“Maybe I will never be

All the things that I wanna be

Now is not the time to cry

Now's the time to find out why

I think you're the same as me

We see things they'll never see

You and I are gonna live forever”

I used that song to cope with more active  treatment. I had little to give to those around me, much had to be taken from all of us. I had to give up so many plans and hopes. Another baby, maybe a horrible daughter who would tell me I’m cringy when she is 16, or maybe a best friend like I have with my mom...either way, I had to accept. If I want the best chance to be all the things I want to be, there must be sacrifices. So I let the apples fall. It happens.

I turned to comforts of childhood to help me learn to accept help and relinquish control. Mister Rogers, I cant even watch the preview yet but thank you for a model legacy for kindness and a way to talk to my children.

“Fred Rogers often told this story about when he was a boy and would see scary things on the news: “My mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of disaster, I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers — so many caring people in this world.’”-www.snopes.com

There were so many real-life helpers for me. There were and are so many of you still here for us. Writing to encourage us, gifting us meals and time and creating beautiful images of precious moments with the kids, healers offering prayers, massage, reiki-all meant to give solace as we continue to weather the storm. The helpers play such a big role in helping me punch back at the anxiety and fears that continue to haunt me the way Schleprock’s personal stormy cloud followed him in My Little Pony.

The waters are far less choppy these days.  As I write today, I’m relaxing in my chemo chair, enjoying the quiet of my 7th of 14 Kadcyla infusions. It’s not ideal to still be in active treatment through next May, but I’ve found the joy here. There are kind helpers. There are souls here I can comfort too. There are nurses and staff I can treat to coffee and donuts. When I normally arrive anxious and mopey, the faces of my care team, all the way from to the valet guy who greets me with a big smile every time to give me the strength to smile upon arrival, up to the chief doctor carefully handling my case.

It’s there, in that chair surrounded by families of all colors, ages, and so many demographic differences, yet all connected through their love for the patient. It’s there, walking the halls to visit the regular nurses and techs and welcome the newbies that I find it, the joy of the day, even as I eventually must sit strapped to a pole and tubes hooked to my chest.

Your happiness in this world will always fluctuate when you feel your stock value is low. But maybe, it’s not your stock value that causes you to undervalue yourself, but maybe it’s your methodology for valuation. What qualities that you do possess can you use to value yourself, to have the confidence to accept your challenge in life, and to still achieve happiness, especially in the face of what feels like an insurmountable challenge?

It’s all about how you greet the world. Find a way to smile, laugh, and let yourself cry every day. Find something to give. Help someone without expecting reciprocation.

That’s the measure I will use to judge myself for 2020. It’s that time of year people tend to reflect and celebrate all the highs and lows of the year. I too feel a pull to take stock of my life. I am evaluating my year-end performance as wife, mother, daughter, friend, employee.

I made some progress in 2019 and I am valuing myself more, believing more that I might be here for a long time, and that I still have role to play for my family. It’s scary, and there’s little reassurance from the medical community, but fuck it, I’m gonna give hope a try.

And I’m proud to say my inner and external voices have spoken sweeter and I loved more deeply this year than I ever have before (still working on that forgiveness I’ve been denying part).

Many couples faced with the traumatic disruptions of a serious disease don’t make it through the tunnel. Before I began treatment, I was confident in the beginning of this year that my marriage and my husband were up for the challenge. The truest challenge would be my internal struggle to share the emotions and fears I was feeling with Mike, not shielding him from the enemy (my morbid thoughts) and to remember to speak with love rather than react out of fear.

We found our joy. We improved our marriage, our commitment, and our love and respect for each other. There were plenty of pouting moments where I failed to hear his words as merely routine questions or comments, not as criticisms and blame for things unfinished, threads still hanging. I approach 2020 with a renewed appreciation and confidence on the solidity of my marriage, and for that, I am so grateful to have had Mike as my a partner for this journey.

2019 is a time to let go. I had to let go of the illusion of control I believed I had in life. I mentally let go of relationships that were already on shaky ground. The rubble and ash left behind paved the way for growth in other and also new friendships, and a commitment to honor the helpers who came to our aid in so many ways. As I said from the beginning of this journey, my ride does not have to be your burden, no one needs to rescue me. I am paddling alone with so many helpers by my side to keep my boat from capsizing.

Despite all the health and mental health obstacles of this year, my stock is still up. I’m not done yet. I will keep fucking going, keep dancing, through May 2020 and to infinity and beyond!

Find your anthem. You don’t need a shit year of cancer to make next year a record-setting high for your stock. No matter what great or small challenge comes your way, find a way to appreciate the day you have, and to LIVE. We are all dying. Maybe not today, but if you live like today might be your last best chance to speak sweeter, love deeper, and release forgiveness where deserved, then you will understand how I can smile at each new blessed sunshine day and feel peace gazing at a silver-shimmering moon, even on chemo day. It was a beautiful day.

Make each day as joyful as you can and find the wonder of your time on Earth. Let the seasons change and do the hard things, because it happens, apples fall, but new growth returns with each sun-kissed day.

Your stock value comes from within. If cancer taught me anything, if losing my hair and control over image provided me any measure of growth, it was to help me calculate my value in so many new ways, and to see even the value and humanity of the dirty man I met laying outside of Dunkin Donuts today, patiently hoping for some small token of kindness, not too prideful to ask for help. I helped. There but by the grace of God go I.

I wish for all of you in 2020 the opportunity to live like you were dying, not in a morbid way, but to empower you to find your way back to letting your loved ones in when deserved, to speak sweetly, love deeply, and forgive easily.

There’s no better day than today.

Care to guess the theme song for NYE 2019?

“I was dreamin' when I wrote this

So sue me if I go too fast

But life is just a party

And parties weren't meant to last

War is all around us

My mind says prepare to fight

So if I gotta die

I'm gonna listen to my body tonight, yeah

They say two thousand zero, zero

Party over

Oops, out of time

So tonight I'm gonna party like it's 1999

Yeah

Let me tell you somethin'

If you didn't come to party

Don't bother knockin' on my door

I got a lion in my pocket

And baby, he's ready to roar, yeah

Yeah, everybody's got a bomb

We could all die any day, aw

But before I'll let that happen

I'll dance my life away, woah”

1999-Prince

Wishing you all a happy, healthy 2020. Now excuse me while I party like it’s 1999 (and I can’t even get into a bar because I’m 16 and grounded)!

End of archived post.

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