What An Honor It Would Be To See 40!

After a long day and cuddles with the grandson, I thought I would go through some photo albums on my computer and internet files. You see, my 40th birthday is coming up. Something I was told in my mid to late 20’s I’d never see.  There was a while that was true, and then we found the cause of my illness and were able to treat according.

Concerts! Left to Right: Kandi Blaze, Ivy Electric,
Chevy Cheyenne, and my beautiful daughter, Destiny. 

In my 30s I gained hope. My life was changing, my child was mostly grown, I wasn’t the same woman, but I remembered the girl I once was.  I wasn’t so sick all the time, actually I looked pretty healthy, despite the immune issues. I had nice curves, healthily cheeks, and was full of so much life. I was a hummingbird. Go, go, go! Couldn’t keep me down, because id been there. I had to live every minute. I needed to experience life. Soon I remarried and was incredibly blessed to be married to my hero that always tries to save me. I was now a grandma to the worlds cutest and orneriest boy, and for some reason he reminded me of my dad. 40 was going to happen! I was going to reach a mile marker that I once thought would never be achievable. Life was truly fantastic.

April 3rd, 2020, I am to be 40 years young. An age most dread, look at as old, or the downhill of it all.  A little less than 3 months away. I want nothing more than to be able to celebrate this day. This monumental moment in my life that I never expected to see, and I know isn’t a full guarantee. It’s never felt so incredible close and yet there are times we not sure it’s truly reachable. 40 has such grace, pause, and maturity if you’ve learned that life isn’t full of mistakes, but lessons learned and not worth repeating. 

1998: My father Ken Cooper (1942-2009), my Grandmother
Mabel Cooper (1911-2006) Kandi Cooper (that would be me),
and my daughter, Destiny. 

Tonight, as I went through those photos, originally planning to create a quick birthday video with pics and clips, I began seeing the healthier vessel I had been, seeing the people over the years I’ve connected with, loved ones, lost friendship, smiles and hugs from those no longer living in this realm with us. I couldn’t hold back the tears. I wanted to be happy for so many connections. So many beautiful faces and smiles I’ve shared with so many of you. I am humbled at many of the relations I’ve had. Sad and sometimes angry at the loss of friendships. I grieve for the dead, but there is comfort in reuniting our souls.

I also realized I’m the only one that knows where all these images are, what music is my favorite and expresses my personality and life. The tears fell incredibly hard when I watched Rob and I shove cupcakes in each other’s faces at our wedding. I laughed and reminisced at the video clip of us shop ladies being in a Dodge drift thrill ride. These were the clips and images I wanted to share with people I made memories with while I was alive! As hard as it will be, I plan on creating a beautiful memorial video of those clips,  images, and memories with so many incredible people over the years. And no one needs to scramble and sit for hours or days and decide what images I would have liked. Here’s that damned double edge sword again. This is hard, but with rare opportunities like this to express art, share memories, and leave one last footprint at my final goodbye, it just seems right for me.

Wow! To be 40. What an honor that will be to hopefully see.

Kandi
01/21/2020

Don’t stop believing in love

2020 is going to be an interesting one for us! Lots of good with the bad, but I need the good and events to weigh out the bad. I am beyond thankful to the places and people not giving up on me. You are my spark of light in the darkness and I won’t let you down, but please know not everyday is easy, just as not every day is super dark. It’s a rollercoaster some days, but when I have events to go to, people that drop in, or shoot you a message to ask how you are, that’s priceless. I feel the love and I thank you for it.

I’ve been called brave, strong, a faker, an attention seeker. I am none of these. I am simply human, living with and dealing with a chronic and terminal illness, but please don’t give up on me. I still hear hateful rumors. I can’t stop people from believing what they want. Perhaps it makes them feel better if it doesn’t exist. Perhaps they can justify their actions and words by telling themselves it’s all for attention. Oh, how I wish this was true. You have no idea how badly I wish this wasn’t happening. You have no idea how badly it hurts to ‘prove’ you’re sick to those that once called you friend or family, and even when you show them over and over, they roll their eyes and delete you out of their life.

And yet, people can be so incredibly kind and compassionate. We are capable of so much love as human beings. So much love to give. It’s truly limitless and in an abundance all around us. I’m trying my hardest to spread the love I still have, because I feel like I have a plethora of it to give. Love. It doesn’t cost a thing.

I’m going to post this image from my family doctors office today. This isn’t from my explosion of specialists, this isn’t my Encyclopedia of a medical file... This is just a brief and quick rundown/print off of a few things... life changing, altering things. Don’t be sad. Be proactive! Fight for the cures with me! Love those that are dying! You think it’s hard on you? It’s harder on them.

Also, those are my feet today. 😂 Biscuits exploding with edema becasue my heart is having some fits and battling with circulation. No, it’s not made up. Nope, not in my head. I’m standing up for myself. I’m not going to allow the nay sayers and haters to put me down further than I already am. No, I’m going to do what I always do and push like a mo-fo! I’m booking my calendar up for the season. Yes, I’ll be on stage and a guest at events, even if I’m dying and under 100 pounds, and you know what, that’s freaking amazing! Ahhhhmazing! Don’t stop believing in yourself.

Just because others want to see you fail, doesn’t mean you stop pushing and give up. You fight even harder, harder than you’ve ever fought in your life. You’re fighting for love. Don’t stop believing in love. ❤️

Kandi

Multiplex of Specialists

I was supposed to see yet another specialist in the afternoon that’s nearly an hour and a half from home, but they scheduled for the wrong doctor. This particular one is a special-special gastroenterologist, that my oncologist referred us to.  We’re told they are supposed to be doing or discussing some form of genetic testing to see if there’s a link between my diseased pancreas and cystic fibrosis, which runs on both sides of my family.

Specialists. I despise that word. I’ve seen more specialists in the past 6 months than most see in a lifetime. Seriously. I’ve dealt with a variety of specialists before since I have a variety of immune issues and spiraling health from it.

Let’s start with my Cardiologist, that’s my heart doctor.  I see him because I deal with Afib and tachycardia. My heart likes to go out of sync, have crazy out of rhythm patterns, take long pauses, and other silly stuff. This tends to cause a sudden change in blood pressure, and a blood pressure crash, resulting in lack of oxygen, headaches, dizziness, slurred speech, and sometimes passing out. The normal medicine, beta blockers, are a no-go for me with my already insanely low BP that 3 out of 4 cardiovascular specialists have said a big NO for me on any meds for the heart with my health history and immune system.

I visit my Pulmonologist most frequently, as of now. That’s my lung doctor. Surprise! All that trouble I was having breathing and excess phlegm was diagnosed as COPD and asthma. No, that’s not fun at all.   Years in a body shop, diesel exposures as a kid, and about 18 years of my life smoking. I’m paying for it dearly, but thanks to a routine powder inhalant, an emergency inhaler, and natural breathing remedies, it’s semi-manageable, except the hacking at night. That’s annoying.  I promise you though, breathing is not overrated.

Oncologists aren’t a lot of fun either. Those are your doctors that deal with cancer. Cancer? Yeah, I’ve had both cervical and ovarian cancers at age 19, followed by a massive surgery and total hysterectomy. I was 6 months pregnant and miscarried right before I found out. I currently see another oncologist for the pancreas. Yes, the pancreas. It’s a dick. Well, at least it looks like one. Mine is extra special, just like me! Years ago my gallbladder was removed because it was in apathy, full of stones, and covered in some form of sludge like fluids. The gallbladder leads to your pancreas. My pancreas started off having acute pancreatitis, then chronic pancreatic flair ups, and now it’s diseased, calcifying, and no longer allowing me to absorb proper nutrients, breakdown enzymes, etc.... in term, all my doses of vitamin D and potassium for my heart weren’t getting absorbed. Hmm... There’s a pattern here. Eventually, if I make it long enough, it will become cancerous and be my demise.

Gastroenterologist is most definitely on the list with all my diagnosed stomach issues... Not only did I have the cancers prior but 6 years of C-diff went undetected and undiagnosed, until it wasn’t and I was almost dead.  One of the longest cases that survived though! It’s not really bragging rights.  Turns out you shouldn’t be given test antibiotics when your daughter has chicken pox and you’ve never had them yourself.  Years of my life we’re lost to big pharmaceutical companies and 28 different prescriptions, most were prescribed double and triple doses since they had deemed me ‘terminal’.  Now we are back at an extreme specialists that focuses on the pancreas aspect of gastrointestinal disorders.

Rheumatologist for the auto immune. I get one super power and my body attacks itself for fun.   How? What kind? Well... that’s what we get to find out! Supposedly all these years I’ve been diagnosed with Rheumatoid Disease, an immune disease that affects so much more than just the joints. Last rheumatologist I saw was in Dublin, OH over a decade ago, and medicine has come a little further in this department, but unfortunately not nearly as much as those of us suffering would like to see. I have an appointment in less than a week with a new Rheumatologist.

Ugggghhh! That a lot of Igst’s.

Weighted in at 94 pounds the other day at the regular doctors office. Don’t forget about the family practician! We frequent that, emergency room visits, and tons of blood work.  There is talk of some form of home health care and assistance so I can at least stay hydrated. They have talked about a possible pic line so hydration would be easier and maybe we could try some form of vitamins through the line.

To be honest, more than anything right now I just want some comfort. I want to sleep without feeling like the bed is a thousand fists with knuckles pushing and puncturing my boney body. Every night I lie down it feels like the start of a horror movie with the pain, sweats, and lots of heavy and vivid dreaming when I do fall asleep. Even on a cloud my knees protrude out enough that against myself causes pain and strain, and my arms across my ribs feel like anvils ready to crash through.

I just want to feel human again and subside the multiplex of specialists. I’m surviving, because it’s the only choice I have. ❤️

Kandi
1/12/2020

Sparks of Light in the Darkness

Sparks of light in the darkness are what keep you pushing. Those little glimmers of hope, or something to grab on to when you can’t see or don’t know if you’re going to make it. Events, races, possibilities of what could still be achieved, building my empire, helping and inspiring others; those are my sparks of light in the darkness.

Life is a continuous rollercoaster of events. It’s an ever flowing river of emotions with curves, bends, narrowing streams, and large falls. What keeps us pushing through the falls, the dark tunnels, and the bends we can’t see beyond? Those little sparks of light, and a hell of a lot of hope. That’s what pushes us forward. It’s fear that leaves us behind, makes us repeat the insanity, or perhaps we find a comfortable spot along the journey, and we stay a little too long while the flow keeps pushing. Life doesn’t stop around you. You’re here for the ride, so you might as well jump on and enjoy it the best you can.

Let’s get back to those sparks of light. The little things each day that make you smile, that bring you a speck of happiness, a spark of light in the darkest hour. It’s the things we all thing of most, our spouse, kids, grandkids, etc. Your sparks are personal and individual to each of us.  For me, my surroundings of hot rods, and those that understand and accept my obsessive car life. It’s my upcoming events, future adventures, and the outings with people that I get to share my story with and help inspire.

A spark can even be an event that I’m on the calendar to host or emcee, but perhaps they cancelled because of my health. Bummer! Double edge sword for both of us. These events push me, because I love the audience, the microphone, talking to lovely people, and when you lose that, the spark dims and disappears. That event you kept pushing for because you love it, the people, the place, the everything, it no longer needs or wants you, and the world goes on. Your light is literally dimming, and you lose that spark that was shining in the darkness. I really think this is one of my biggest fears, losing my identity, my sparks of light. I’m not ready for this part.

I need those little sparks of light.... I’ve been so sick. So sick that sometimes we don’t know of it’s going to be more than a few days or a few weeks. Then we have a few days where I pop back a little, i manage, function for a week with videos, work, events, and then one of the flair ups begin again. We know I don’t have more than a few years, if that.  We get that. But if we can get those reserves up enough here and there in the mean time, and not get super sick with the flu or a bad bug, I will indeed have a couple more years. However, the flair ups can last until I’m gone...this one hasn’t stopped, they dont know if it will, and if it doesn’t or I don’t get enough reserves when the next one hits, that will be my demise. Now you see why I need those little sparks of light.

Racing! Yes, drag racing is one of my sparks. Not just to be at the track, to race down the quarter or eight mile, like my father and his father did. Banging through the manual gears in our big block Chevy, feeling the torque pull me back in the seat, watching the metal flake glisten under the track lights. Yes, drag racing is one of my sparks. That’s my drive, my spark! I’m racing the Nova! The Atomic Fireball will have me behind the wheel at Dragway 42. That is where I got my spark of life and that I where I will finally throw some horsepower and lay some rubber!

Sparks of light make me feel alive. They give me hope, purpose, meaning. Sparks can even be people. What a beautiful soul someone must have if they are a spark to another.  ❤️❤️

Kandi

01/03/2020

And So I Write....

When you read, it’s the job of the writer to give you heavy descriptive words so you can paint the image in your head, or understand the perspective that’s being portrayed to you. As a writer and artist, you have the ability to over or under exaggerate your story. You also have the ability to leave certain parts out that you don’t want to share.

Humble. I want to handle this every day in the most humble of ways. That’s so much easier said than being done.  It’s easy for me to sit here with my fingers clicking keys, and tell you how humbling I’m handling this. I could flat out lie to you and make it out like I’m the classiest person in the world with dying, but I’m not. I’m far from it, but I’m trying.

I lost my shit the other day. I spiraled completely out of control, and I don’t even recall all of it. I simply remember being incredibly frustrated that I’m constantly trying to remember where I put something or what I’m doing. This goes above your normal forgetfulness. At times I forget how to place the ponytail holder in my hair after I’ve brushed it. It’s a common dexterity that should be familiar to me, yet I stand there with my hair in one hand,  band in another, tears swelling up in my eyes because I can’t recall how to twist, bend, and attach this stupid thing to my hair to hold it back. I despise being aware of it. The next time it’s all familiar and there isn’t a struggle,  it you never know time to time when it’s going to change.

I’m pretty sure I lost it the other day over keys. Yes, keys that I had been looking for and had in a specific place. I couldn’t find them and had just been looking for all my other ‘misplaced’ items that were right in front of me a bit ago. After ten minutes or more of searching I found out my husband had taken them to start and warm up the truck. I should have been so happy that he is incredibly kind and thoughtful. But no, I lost my shit. I just spiraled because I had spent so much time in sheer frustration looking for these keys, feeling like I’m loosing my mind, that I just lost it physically and emotionally and the meltdown began. I kicked boxes, I screamed, I ended up on the floor, covered in sweat while screaming, sobbing, and bawling.  I was likely snotting and salivating all over myself. All the while shaking, and I just kept repeating like a crazy person, “I can’t do this anymore! I don’t want to to this anymore!” Because I don’t. I fucking hate not feeling human, being in so much physical and emotional pain that the only resort is to finally cave to the pharmaceutical opiates. Then I’m a zombie. A medicated, disconnected zombie.

Frustrating is accurate. The mind games my body plays on me. It’s like being drunk and hungover but without any of the fun parts. I only get the memory loss, disorientation, and hellacious hangovers, but none of the great memories or fun regrets in the process.

I feel alone more than I should. I have the most compassionate husband the world could offer, and he’s a full-time career firefighter. I spend a lot of time alone. I love and adore what he does, and I wouldn’t change it for the world. It does however make it complicated at times when I’m so incredibly sick and he can’t leave a 24 hour shift. It’s something I will never blame him for, and at times, I love the quite house.

Through the past year, many of my friends have abandoned us. We walked away from car clubs and several events, for many reasons, but one of the main ones was hearing ‘friends’ or in most cases, catty women, accuse you of faking your health or doing it for attention. Yeah, I’m just seeking attention (inserts eye roll).  That actually happened, and I truly hope the people that chose to not only think that, but take it upon themselves to try to tell and convince others, I truly hope they don’t show up at my memorial to mourn my parting. Maybe that’s not humble of me, but it’s real, it’s hurtful, and I’ve experienced it first hand.

I’ve closed a lot of doors in my life and I use to reopen them. The last year or so, Ive found it incredibly hard, and often too scary to open new doors to allow new relationships. I've grown older, seen the actions of grown men and women that put partying in front of being real with the people that need them in their worst hour. I’m doing my best not to be a bitter person from it. I’m doing what I can to remain humble, despite the actions, words, and messages from others that I have received, asking me not to be part of local events or car shows, because of my non-traditional beliefs, or because i have gay and transgender friends. Yes, I have literally been asked not to attend a local and particular car show that claims to be traditional with their rods and customs. I was literally told I was not welcome to support their show with funds, exposure, or attending. I’m being judged for who I am and because I am compassionate with all walks of life. So in some ways, I suppose I am bitter because the friends and family that said they would be there for you through it all, abandoned us when we needed them most. At the first sign of truly being sick, we were told we were broadcasting it too much as seeking attention.   I’m not sorry we choose to step back from those that think it’s funny or acceptable to make fun of others health and life. We lost the zero fucks attitude, because when you have that attitude towards life and others, you lose your compassion and humanity and the rest of the world sees it.

I know I’m going to do this mostly alone. When Rob is at work, I no longer have anyone to call that can rush right over, or that can come to the store or parking lot when my heart has decided to go into afib. It’s just him. My small and scattered family doesn’t live close, and in the end friends visit less because it becomes hard for them to see you dying. It’s a burden they can no longer bare, so you do it alone. I have my Dalmatian, my loyal, loving, and always by my side, spotted girl.

And so I write...

Kandi
01/02/2020

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