Surviving and Yet Another Medical Specialist

Surviving. That is usually my response when someone sees me out and about and asks how I’m doing. It’s the best answer I can give. I’m surviving the moment.

Yesterday I had a few good hours and was able to take my classic truck around a few blocks while I enjoyed the streaming beams of warm sunlight.

The day originally stated off with a scheduled MRI of my brain. I’d been rather nervous about this as I’ve been experiencing some questionable and concerning issues. My speech has been slurred a bit, I often stumble over what’s in my brain and trying to come out my mouth... I can picture it but can’t recall the words or how to form them.  My memory, including some cognitive skills were struggling way beyond that of a normal brain fog. To top it off, I recently began getting headaches on my left side, and seeing changes in light and my vision. I kept telling myself that it was just malnutrition.  There was enough concern the doctor felt an MRI scan of my brain with and without contrast should be ordered. We were told in 48 hours we could expect the results back.

Less than four hours later the results were in. Abnormal. What?! Can I please just have one thing come back and say that it’s ok? Nothing was found! She’s in the clear! Of course not. Abnormal. Ha! Story of my life.

“There are multiple small foci of hyperintensity on T2 axial imaging. Image 14 of series 5, in the left subcortical white matter, which are nonspecific and could represent a small focus of demyelinating or post inflammatory reaction.” 

 The good news? I don’t have any massive tumors and I don’t have an aneurysm! The bad news? The scan didn’t come back in the clear. You always want a brain scan to come back clear of any abnormalities.  There are signs and concerns and they just happen to be on the left side. So what does this mean? It means I now have another specialist to add to our growling lists of doctors, specialists, and specialists for the specialists. We are in the process of getting the appointment set up with a neurologist in Mansfield. Finally! Something closer to home. That unto its self feels like a small victory.

Thankfully yesterday was a little fuller of life, as today I’m confined to the house, but mostly the bedroom. I made it to the bathroom once and ended up doubled over on the floor due to the excruciating pain the pancreas has me in today. I can’t even put it into words. Today i can’t even muster the energy to cry because my body is too physically exhausted from the continued state of it fighting itself.  Odd moans that I can’t control mumble, muster, and sometimes bellow out.

Days like today, pharmaceuticals are not the answer. You’re too miserable to deal with the spiraling side effects that overall worsen the experience. As terrible as the pain is, and it is inhuman, it reminds me I am still alive. I’m still here, clenching on to hope that with my rare case, some how, some way, a panel of specialists will figure a way at a better the quality of my life. My case is incredibly hard with my past and current medical battles. When you have specialists from all around that have gathered to discuss your particular case and medical history, and they are still baffled as to how you’re still alive, that speaks in volumes.

They are trying. We are trying, but pancreatic disease in all forms is still such an unknown, let alone with my oddities of medical battles and extensive history with the heart, lungs, autoimmune, past cancers, surgeries, and everything in between. I honesty don’t know why the hell I am still here. I hope there is a grander plan than this, for me, and those around me watching me die.

I’m incredibly tired of just surviving.  I miss the hummingbird I used to be. So full of energy, life, and never letting anything stand in my way. A constant go, go, go. I had battled before, and I have lost greatly. It taught me to embrace every moment life offered and to celebrate it with passion, enthusiasm, and love.

I would give almost anything to have that chance at living life again.

Kandi Blaze McCrea
02/04/2020

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

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

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