A Humble Experience of Love, Life & Death

I believe this is the first of my memoirs of what it’s like to live with the chronic and now terminal state of this pancreas disease, calcification, a-fib, blah, blah, blah.  So many labels and specialist, that to spew it all out in one sentence turns into a paragraph with an extended amount of commas.

My blog will continue my adventures of cars, events, and exciting things, but to it I will now add a huge piece of my life, the ending. While that might sound a little depressing, and it is, it’s also a rare and beautiful opportunity that I’ve been given as someone that is incredibly expressive. There is sadness, but much beauty too as I grow closer to returning to my celestial home with my ancestors.

We live each day, planning for the future, keeping commitments, and pushing for tomorrow, even if we know it’s not guaranteed. While we hope i still have a couple years left, we have had some scares, and we know that those years, as much as we hope we get them, are not fully guaranteed in my current state.

I want to die gracefully. I want my death and how I choose to handle it to be a humble experience for myself and those around me. Yes, I’m mad. It’s unfair. I’m young, I’m so many things, and now there’s things I’ll never got to be, and that’s ok. I could be angry at the world. Mad at Gods, the ancestral energy, chi flow, the universe. But I’m not.  This is the cycle of life, the process that begins the moment we take our very first breath of life as we exit the womb.

 I have a rare opportunity that not everyone gets. I get to make the memories, and say the goodbyes. There is much I can plan for and lift the load off my spouse when it’s time for my ashes to be spread. Sad, yes, as it’s one of the most beautiful and cruel love stories for those that have witnessed it. A firefighter that saves lives falls for the women of his dreams, a car building, drag racing, hot rod chick. Girl gets sick, guy marries girl to try to save her. Girl gets sicker and can’t be saved. The hero in the story can’t save the love of his life. She got her knight in shining armor, but it was turnout gear and a fire helmet. The story is beautiful and the two were written in the stars to be together.   That’s the short version of our story, minus some burnouts, racing, and trips to the lake.  Maybe in another life we’ll meet once again.  It’s my hope.

Dec. 30th, 2019 - Sz 0 jeans falling off.

Currently I am well under 100 pounds, my size 0 jeans slide down and fall off with any weight in a pocket. I wish it was as easy as simply eating more or taking vitamins. Unfortunately we’ve reached a state that my body no longer wants to absorb nutrients, vitamins, supplements, etc. Dehydration and malnutrition are familiar battles, and the ER visits for routine maintenance will/are becoming more frequent. I took this image today.  This what this auto immune and disease that’s calcifying my pancreas looks like. I hide it well with copious amounts of makeup and clothing, but on but this is the reality of what it’s like to be terminally ill.

Some of my upcoming posts may be sad, some may be informative and educational, others may be of experiences of what it feels like walking between two worlds when the veil is thin. These experiences are often beautiful, and are what allows me to have a comfort in knowing where I’m going is simply home. I’m a soul, a form of energy, having a human experience in this dimension.

Thank you, for being part of my journey. I look forward to seeing so many of you this year at the upcoming events, and please know I am open to all the hugs. Let us make memories and leave foot prints in the hearts of those we love.

 Kandi

The Answers We Awaited but Never Wanted

I’m sure many of you have noticed by now that there has been some significant weight loss to my already petite frame. Most of you already know I have battled most of my life with an immune system that likes to attack my body in every way humanly possible, and in some ways that seem humanly impossible.   I’ve battled cancers before, being in a wheelchair for several years of my life, and things we won’t even post on here.  We’ve been dealing with a lot of issues over the past year with my heart and cardiologist appointments, with my stomach, trips to the pulmonologist for my lungs, and so many issues with my pancreas.

Over the course of the last several months we have worked with every type of specialist that you can imagine, and even waited almost a month so my case with my pancreas could go in front of an entire board of the best specialists from all over. Currently my oncologist is now teaming up with a special pancreatic gastrointestinologist. I went from having and being in the hospital with acute pancreatitis flareups from my immune system, to chronic pancreatitis flareups, to every single day of my life now is a constant state of chronic pancreatic disease and the pain levels are absolutely inhuman. My pancreas is diseased,  and completely abnormal, and is now hardening, and not soft and pliable like it should be normally.  This makes for even the normal digestion or gas bubbles to be excruciating, and sometimes not even possible.  You don’t wanna know or experience what “not possible” means. I promise you!

Please, before you comment with recommendations or remedies, know that we have been traveling all over and seeing doctors and specialist and have tried everything that you can possibly imagine. Even the most extreme surgery of removing the pancreas completely and putting me in a constant state of diabetes with an insulin pump is not an option for me. My immune system at this state will not allow me to go under for surgery nor will I recover, and with already having my gallbladder removed, multiple stomach issues and long-term effects from the cancers, I will surely die on the table or in recovery. That is something multiple specialists have agreed upon. They cannot remove part or all of my pancreas, my pancreas will not heal, I cannot live without my pancreas, but it is not working right either. It is no longer allowing me to fully absorb my vitamins and nutrients, and the simple act of eating more than a couple bites is like playing a game of Russian roulette. You never know the outcome, but chances are it’s not going to be pretty, and you’re going to regret those few bites that you actually managed to get down. 

This Unfortunately has a ripple effect on my body. Because I’m not getting all the nutrients I need and vitamins, I am losing weight, when I haven’t ate right and keep fluids in or down, my heart will have more PVCs/PCA, a fib, tachycardia, etc.  The weight loss is wreaking havoc on the rheumatoid arthritis, which is where the auto immune issues stem from. I know, right? I get a superpower and my superpower is that my body gets to attack itself. LOL 

So, you’re probably asking yourself what’s the next step? To be honest with you I haven’t even filled you in on all the shitty aspects of it. That’s enough for now, and that’s all I can really deal with emotionally at the moment. My life is going to be a forever battle with this, and it will most definitely be shortened. Lucky for me I have an incredibly supportive husband, who has more compassion and one of his hands than most people I know combined.

I can’t take the idea or thought of not pushing myself every day, I’m going to continue to be the face of my hot rod shop, and getting up on stage with beautiful pin ups to emcee.  None of that will change (to a degree), but you will see it in my face and in my weight, that I am not as whole as I would like to be.  It’s taken quite the toll on my brain, and some days I just can’t quite grasp everything with the pain brain as we like to call it, but I have an amazing team and together we do it at the shop. At home I have Rob, and I honestly don’t think I could or would be able to do this without him.

I have only kept a very small handful of people in the full loop this whole time after doctor visit, after specialist visit, after CAT scans, after all the crazy shit we’ve been dealing with and doing. Unfortunately we still have a very long road to go, and a lot of things to accept, and more to expect with long term.  I haven’t mentioned anything on health in quite a while because I was blatantly accused of faking it, being sick for “attention”, and all sorts of stupid stuff from people that were supposed to be our family and friends. We have since removed ourself from those people/groups, because life is too short to deal with the drama and bullshit that other people want to say about you or accuse you of. Simply put, life is too short for the petty actions of others.  For this, my success, my happiness and my struggles, I am hated by many, and I choose to not allow it to affect us anymore. 

Thank you all for being part of our life, and following my Facebook posts, the hot Rod shop, and all those crazy fun adventures that we take. I’m always telling you guys that all we leave behind are foot prints and memories in the lives of others, and I’m telling you right now that is extremely true. When you feel your mortality, the only regrets you really have or things that you didn’t do because you thought you would have more time. The things that you would assume that you would regret, are more like life lessons and mistakes. The regrets are the moments that you didn’t take that you should have.

Stay humble, love hard.

Kandi