Surgery, My Life Wisdom, and Love

Kandi & Rob

March 31st is the big surgery date in Cleveland to have the cancerous kidney removed. The specialists told us before with the spiraling blood disorder that surgery wouldn't be an option, or at least not a safe one. Then the cancer growth in my kidney more than doubled in size in less than 3 months and starting tearing my immune system apart, flaring up more underlying health issues. Surgery is now the only option to remove the kidney and growth. Chemo is off the table and not an option for this type of tumor, let alone my spiraling immune system. Unfortunately, not all of my preliminary testing went as planned and we’re not in the clear yet. They found some concerns with my heart. Actually, the doctor asked me if I had flat lined since my last test. Ummm.... Not that I’m aware of! 🤷‍♀️😎 

The surgery, especially with my health and where the growth is, is extremely risky. While I’m highly anticipating to get this removed in hopes of feeling better, Rob and I are both terrified at the possibilities of them finding more, or me not coming out of this. Yes, this a realistic and hefty concern with my heart, blood, and other health issues.

There will be a team of specialists assisting throughout the surgery and after to keep an eye on my immune disorders, blood clotting, heart, etc.  We’ve had trouble with me metabolizing anesthesia too quickly in the past and I have woke up during the middle of surgery. This was when I was much younger and a lot healthier.  They are still seeking an anesthesiologist that feels comfortable or confident enough with my reactions and medical responses.  

There are major risks for anyone with this surgery, including death. With my current health, the risks are heavily multiplied.  However, we are now between a rock and a hard place and surgery is the last resort.  It’s now the only remaining option to potentially prolong my life and hopefully reduce some of the underlying issues. Unfortunately, this surgery does nothing to benefit the pancreatic disease and the genetic blood disorders.  This is a battle that we will continue to fight for the rest of my life.

My birthday is April 3rd. I’ll be 41. I’m grateful. The doctors told me I’d never make it to 40, and here I am. Not necessarily as active, mobile, and healthy as I would like. But nonetheless, I’m here, making memories, spending time with those I love and continuing to build my legacy. 

If surgery goes perfectly, I will be home the day before, or of my birthday and then have about 6-8 weeks of extensive recovery. There’s a buttload of concerns from the doctors and us about the recovery, but first we just have to make it through the surgery and we will go from there. Palliative care should be coming back into play for some of the recovery. Hopefully. 

Our insurance company contacted us about home care, and if we’re lucky I might qualify.  Right now our insurance isn’t the best , especially since it recently changed.  We’re both trying not to panic at the amount of specialists, tests, procedures, and extensive bills piling up (even after insurance pays). It should not be this expensive to be sick. No one should have to go into debt like this.  It’s bad enough your battling for your life, and then you watch statement after statement roll in. We keep losing the kitchen table and counter with the stacks of medical bills that look more like a waterfall.  I try not to focus on the spiraling medical debt that adds up to more than a nice house.

As for recovery, they are telling me I won’t be up and around for a while. Nor will I be at the hot rod shop or able to work for a month or two.  I’m dreading this. Rob was able to take leave from work to assist in my recovery. I’m doing everything I can to not over stress about the finances, our insurance that has changed, the astronomical costs (even with so-so insurance), all the traveling expenses, etc. The amount of stress that’s not even part of the surgery feels astronomical. The doctor actually told me I had, “circumstantial anxiety”. Well, duh! I can’t imagine why?! LOL No clue! 

As you can image, my brain is a whirlwind right now. Much like my health. We never thought on top of the current battles we’ve been dealing with this.  All the pain I had in my lower back, turned out to be cancer of the kidney. Listen to your body. If something feels off demand testing. Demand an MRI. Don’t let anybody tell you you don’t know how you feel. 

I’m going to get emotional with many of you here for a moment. As I mentioned before, this is very high risk. I didn’t even qualify for a port in my body to make weekly infusions easier, because it was too risky for clotting. So you can imagine with the surgery, it’s scary as hell. I don’t have a fear of dying. Death itself doesn’t scare me or the possibility of what is or isn’t after. Not living, not loving, and not being able to experience everything I can fit in into the short life, is what scares me. The one thing that is guaranteed for every single one of us no matter what, is that we will die one day. That is the balance of life. I’m fully aware of this. I still feel I have so much love to give.  I’ve learned that you can have all the money in the world, and all the cool things to pass on to those you love. But years from now the money will diminish, the cool things will be sold off to people that they don’t have sentimental value to. The one thing we truly leave are our memories and foot prints in the hearts of others that we have impacted while we were here on earth. Those memories, and stories, are passed down from generation to generation. That’s how we truly live on. Our soul stays alive in the hearts of those that loved us. To be remembered and have your stories shared for generations after you’re gone from this earth is truly the highest honor.

My advice, or wisdom, may sound cheesy to some. But it’s what I can offer you. I’ve learned that this world around us is so much bigger than we’ve ever dreamed. I’ve watched so many of us keep ourselves in a bubble or a shell out of fear for things that are different, or maybe outside of the norm.  Throughout my life I’ve read and been brought up through a variety of religions and faith. Some of the lessons have been beautiful, while others have strayed me away through their judgments and self righteousness.  I have learned that labels and what you believe don’t make you into the person you think you are. The love you give others, the tolerance and acceptance of those that believe, act, and look different is what makes you a good human. I’ve learned that we need to love our neighbors (all of them), despite the differences.  I’ve learned to look out the window and not just see the cars passing by. But to reflect on the angles the sun is shining, how the shadows are moving, the way the blades of grass are blowing, the sound of the leaves rustling from the trees, the way the wind caresses the cheek and kisses my face.  I listen to the birds, watch the squirrels, and I try to sit and take it all in. Every moment, every breath, I try to take in the beauty that’s all around us in an abundance.  Be part of that beauty. Be part of a greater picture, a higher self, a kind and loving human being that can set political, religious, and racial diversions aside. How you treat others, despite their beliefs, views, orientation, etc, is a reflection of yourself. I have friends and acquaintances from all walks of life, from all around the globe, from all sorts of religions and faiths. I wish more people would embrace the diversity of the world. To learn from one another, to understand each other, our paths, our past, to accept, to love, is what is truly important as a human being. 

A light hearted human being doesn’t allow the lines of borders, religion, or politics to divide us or breed hate. We are the teachers of now and tomorrow. Perhaps my time here will leave a few imprints in some of your lives.  

We have so much love to give, 

Kandi

March 21st, 2021

I Wanted To Die Today

How do you not give up on yourself when it feels as though everyone has given up on you?

Today was ugly. The ugliest, and I made it that way. The past few months we’ve had hydration and infusion treatments that worked until my veins collapsed, been diagnosed with kidney cancer on top of the thrombosis blood disorder that’s spiraling, on top of pancreatic disease, on top of autoimmune, on top of, on top of.... yeah. The specialists keep growing, just like the bills.

Today was so ugly. I made it ugly. I’m tired, at my wits end, and honestly, I don’t want to do this any longer. I can’t tell you how badly I want to give up. Everything hurts. It sounds generic, but it’s the truest way to describe it. Everything... fucking... hurts. 

Today, I almost through myself into moving traffic. I wanted someone to hit me. I wanted to die today. I’ve been dealt a lot in my life, good, bad, indifferent. Today, the love I have for my family and my friends couldn’t pull me back. I wanted to die. I made my husband look directly into my broken eyes as I repeated to him how I no longer wished to live. I kept repeating it to myself. Why? Because I can no longer handle this burden. 

It sounds selfish to many that someone would want their life to end, and perhaps it is. Perhaps it’s just as selfish of those that want to keep you here, despite your own suffering.  Some claim morals, religion, damnation. Me, I’m just tired. 

I’ve given up on me. Most everyone around me has given up on me.  How could I not finally break down  and apart? I have two choices, medicate with pharmaceuticals and be fully bed ridden, an opiate addict, and spend my final months or years a vegetable with no feelings, numb, no life, etc.... or... Push myself everyday as I’ve been. Pained beyond measure, gaining resentment, growing more and more exhausted by the day, mad at the world and a broken system, and constantly living in fear that I’m a burden to my husband. That one day he’ll also melt down and finally just say fuck it that he’s had enough. Because I’ve certainly had enough of me. Currently, and maybe for the first time ever in my life, I despise myself. I hate me today, and the behavior that has spewed out of me like a fire consuming everything in it’s path.  I hate everything about me today. 

Do I check into a mental hospital so I can be numbed on pharmaceuticals? The counselor seems to think all of this is completely normal for a terminally ill patient. Normal? Let me tell you, wishing death upon yourself doesn’t feel normal. Wanting to jump in traffic to end your pain, doesn’t feel normal. Feeling alone in a room full of people, doesn’t feel normal. Writing and scraping notes that apologize for not being able to go on, isn’t fucking normal. Knowing the love others have for you can’t save you, no, that’s not normal. 

I don’t want the anti-depressants when the only reason I’m depressed is because I’m in constant pain and dying. I don’t want the anti anxiety meds when all they do is make me sleep the entire day away. I don’t want to miss life, I want to live it! And yet I wanted to today was die and hopefully be free. 

Fuck cancer. Fuck auto immune diseases, fuck pancreatic disorders, and fuck those that profit off of the pain and suffering of others. I’m tired, boss. I’m tired of all the ugly.  I’m even tired of myself.

I. Just. Want. Peace. 

Feeding A Hungry Soul

The past few days my soul has been screaming. It’s hungry. Starving! Famished for creativity.  I love to create. It doesn’t matter weather it’s a homemade dish from scratch in the kitchen, old world artisan breads, crosshatch ink drawings, pinstriping and painting, or even the visualization and mind set to create videos for the hot rod shop, or thinking of different and complex paint schemes and car builds. I crave the need to create. My soul wasn’t going to allow me peace, until I listened and allowed the art to flow and release.

Tonight I listened. I grabbed a few snacks, cranked the music up, and grabbed my pens and some paper. I knew what was coming, so I grabbed some Kleenex too.

Often when I crosshatch my little Skullie drawings or create some macabre art with my pens, I include an original poem with them. It’s part of the process. When I’m drawing and releasing, my mind is finally focused on just this and the words that want to flow with it.

Normally my mind is in a constant state of multiple thoughts. A monologue of creativities with commentary voices of every scenario, everything I’m doing, and random babbling. At any given time my brain is in a thousand different locations, hosting hundreds of subconscious conversations and decisions or ideas that are fluttering about. Sometimes they even have fun little accents.

At times, I am able to shut it all completely out and focus on what’s right in front of me. That only happens for me when I’m making tantric love to my husband, and the entire world ceases to exist outside our bedroom walls.  Rarely, and usually when my mental health is hitting bottom, I’m able to lose myself entirely into a piece of part. I forget how badly my mind needs that release of the chaos. Just for a bit i get to see what’s right in front of me.

I feel the urge to create all the time, but I find myself feeling guilty if I choose to give it my attention.  I understand how an artist or writer can get lost or wrapped up in their work for days, weeks, or months. It’s easy to see how they forget to exist outside their creative bubble. You can dive deep into your art and creations to forget the ugliness of the world. Why would you want to come back from that? Perhaps that’s why I choose to stop and step away from the world when it’s my last mental resort. I can’t focus on anything else and the world I see around me is crumbling, so I must loose myself, create, and release.

Once I’ve managed to put a piece of my soul on paper or a canvas of sorts, I feel like I can breathe a little bit better. The world around me is still noisy and chaotic, but I can manage instead of drowning in it.

I think I need to dedicate a little more ‘me’ time. Time to myself that I can create, and where I don’t feel guilty stepping away from house or work duties. Rob and I had spoke about making the basement my zen area. An area where I could escape, do yoga, listen to music, paint, draw, and just escape the world if I needed to. I think I’m ready for that.

His Love

Not a single soul had ever understood her the way he did.

His gaze would dance across her face even in her darkest moments.

His caress the only comfort when her world was ending.

His arms the saving grace she needed to lose herself in.

He loved her, despite her many flaws.

He loved her, despite her being broken.

He loved her for who she was and always had been.

He only wished she would see herself as he saw her.

©️ Kandi Blaze 2020

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

An Elaborate Dance with Death

“Today my Soul Remembered You”
Drawing by Kandi McCrea - color by Barbara Barnes

There’s the good days, and no matter how good they are, how happy you feel, how decent your body maneuvers that particular day, how many smiles overflow your face, the bad will come. You try desperately to prepare yourself for it. You know the excessive shaking, attacks of a-fib, the not being able to leave the bathroom or bedroom for hours on end with your stomach and pancreas, the continuous surges of inhuman pain the consume your very state of existence are coming. You can only hope you got your reserves up, because if not, this could be it.  It, the pain, the emotions, the everything, and it’s no longer just confined to a particular area.  Your terminal state of degrading health hits you like a head on collision agains a cement wall. You’re pretty sure a crash test dummy has experienced less pain.  Despite that, your brain tricks you into thinking they, the next round, can’t truly be as bad as the last time, let alone worse. You can’t possibly spiral out of control worse than the last time. Then it comes. Bam! Crash! Surprise! Here I am! The crippling moments and days of autoimmune pain, combined with your pancreatic disease, your heart crap, and now your in-home  breathing treatments from your COPD, just to list a few.

But wait!  Like any good salesman, there’s more! So much more. I want to go into details about all of it.  Every fucking millimeter of my body and what it’s doing. My brain wants to analyze it, even if we know the answers. I feel like I have to continuously vocalize every moment of what I’m going through and be descriptive about it, and I don’t know why. I don’t know if it’s a coping mechanism, or because I’ve been in relationships in past that undermined my health and pain. What I feel like it’s doing though is dragging everyone down with me. Who wants to hear you constantly complain about every movement, every breath, and why it hurts, and why you’re sad, depressed, and overwhelmed about it? They can already look at you, see you’re unhealthy, and know you’re dying. Every new, little, or preexisting ailment that comes I feel I must speak and be vocal with. I look at my spouse and though he’s full of compassion, I know he’s mad. He’s mad at the situation, mad that he can’t fix me. Mad at the accumulation of ongoing expenses that will still roll in long after I’m gone.  The dying wife he’s watching wither away into nothing has to be incredibly hard on him. I’m sure he misses the smiles, because I know I do.  Sometimes when I find myself going on and on complaining, I just look at him and wonder if thinking or hoping I’d just shut the fuck up already. It’s what I think to myself sometimes. I get tired of it, because I’m living with this every second of every day. I don’t get a break from not dying. I don’t get to take a day or moment off of knowing if this is my last day. But the pain.... that’s what I’m never truly free from. The emotional and physical pain are beyond anything I’ve ever experienced, and those that know me, know I have battled greatly and lost deeply. I assure you, I have experienced pain.  We’ve tried all outlets with pain, and some days, no matter how strong the pharmaceuticals and natural pain meds, it’s not enough to take away the physical, and then those damn demons start dancing around in your head.

Today I don’t know how to push through besides this. This right here. Expressing myself. Today, the writing is literally saving me because the demons have grown dark enough that I can’t see past the current physical and emotional barriers.  My brain can sometimes be my best friend with the creativity, continuous thoughts on creating, visualizing, dreaming, and all the things that come with being an artistic soul. Then, there are these days. Days that I hate me. I hate this disease, what it’s done to my life, my physical body, my health. There are days when I’m so sick I can’t physically function and then it happens. My brain is no longer my friend, it becomes my worst enemy on a self destructive path. I’m already an over analyzer and micromanager, so when the darkness consumes, my brain continues the patterns of extreme details, but unto everything that’s detrimental and unhealthy.  The feeling of being a burden sets in. The harsh realities of your future, or lack of, come crashing down. 

I usually and finally cave to the physical and mental exhaustion and the spiraling of emotions set in.  At this point in time I’m usually too weak to do much of anything besides be in the bed, alone, with my thoughts.The 92 pounds that I currently am struggles to get into a comfortable position in an old bed. I doubt there will be a new bed before I’m gone. It’s something I’d give almost anything for, but I’m watching the medical bills and current state. I really don’t want to die in the bed that my husband and his ex wife used to sleep in, but that’s where I spend much of my time. Yeah... things no one else thinks about, but when I’m in this state, that’s the level of details that my mind spirals around. 

I have so much planned for this year. I couldn’t give in and plan 2020 by staying in bed, dying, with no hope. Fuck me! I’m not going out like that! That’s why I push so hard, despite everyone’s orders. I don’t want to go out this way! As much as I want to push myself to the limits, and I do, I also find this completely opposite feeling when I’ve reached the level of today. In bed, afib and tachycardia going crazy with their spiraling effects, in-home medical breathing treatments and I still can’t breathe, the rheumatoid and osteoarthritis making it extremely difficult to move. I feel the skipped beats thumping in my throat and chest, the blood pressure crashing, head throbbing, and I’m tired. So incredibly tired of fighting and pushing today. 

The darkness is here and the full of life pin up rolls over in bed, knowing she can’t give up, not for herself, but for others that aren’t ready. Days like today, I am ready. I am beyond ready to be free of this.  Days like today I don’t feel strong, I don’t feel brave. I feel like a coward because when I roll over I pray to my ancestors for this to be my last breaths of life.  I pray they will end the suffering because I am not strong enough to keep pushing like everyone thinks I am. The sicker I get the more I understand why there are countries and medical professionals that believe in assisted suicides for terminal patients. Some say that would be weak. No. No, sir, that’s the bravest battle they overcame and they left this world with dignity. 

When you reach the level I have, your perspective often changes. Much of what I have felt throughout my life is coming full circle. Every day I am faced with new challenges. The biggest challenge is pushing yourself. Not giving up on yourself sounds so much easier than it really is. Sometimes I have multiple episodes in the same day of the ups and downs. I’ve got this! Even though I’m dying, I’ve got this and I’m going to die with grace and beauty. Today, I don’t have this. I don’t even have a spec of it. Yet some how, some way, I will manage to pull myself together enough to make it through until that is no longer an option. I can’t give up. I can’t give in, and I have to keep planning as though my life will be long and full. That’s not easy, but I have to do it for me. If I cancel the events, cancel the racing, cancel the emcee work, then I’ve already given up on myself.  That’s why I push, even when I can’t see past the next five minutes.

Today I write to make it through. I don’t write this for you, I don’t write for likes and reviews. I write for me, so I may pass the time in hopes that this release will eat some of the darkness away. 

If you are following my blog and health, thank you. I know it’s not easy to read, it’s very raw. I can not sugarcoat death. Death is not prejudice. Within the same moment I have watched my newborn son take his vey first breath of life and within minutes or less, he took his last. There is no such thing as being spared because you’re young or lead a life of purity. When it’s you’re time, Death comes for you. Some how, I have walked the line with Death before and now we dance. It’s becoming quite the ballroom for our elaborate dance. 

Xoxo,

Kandi 

My Cage (poetry)

Kandi Blaze - Image by Frazees Photo Stash 

“My Cage”

I often wonder what it is I am hiding from? Why I allow copious amounts of fear to consume me. With death I have become far too logical and comfortable for most to bare listening. I find conversations about our mortality to be rather delightful. The more I think about my demise, the fuller I feel to life and living it.

What am I running from? The tingles in the base of my skull turn to my pores excreting sweat, as my heart skips beats and pounds rapidly. I can feel each beat thumping in the pit of my stomach and in the sockets of my eyes. It’s eating me alive.

Everyday the feeling haunts me, it rears it’s rage. A feeling of failure keeps me locked up in my own cage.

©️ Kandi Blaze

Image and design by Frazees photo stash - Jason Frazee. I absolutely love working with Jason, and this set was exceptionally interesting and artistic. The set is an artfully done nude series of images to reflect the soul, the rawness, and maturity of life.  We did a few different styles that day and several of the images I felt compelled to write a short and expressive story or poem with.
Thank you for being a fan of my page and following my adventures in life. I hope you enjoy these images and some of my writings.
Xoxo,
Kandi

It’s Just Me... (poetry)

Kandi Blaze - image by Frazees Photo Stash

“It’s ok,” she whispered, as she invited me in, “you’ve been here before.”

I don’t recall this place, but her presence was hauntingly familiar. Confused and weary whether her intentions were benevolent or malevolent. Why do I feel so strongly to follow her? Why is the pain in my very soul of existence pulling me towards her?

I’m climbing. I can do this. Keep going. I just have to.... I just have to reach my hand out and touch her.

I’m screaming, “Why?! What is happening?”

I can’t catch my breath... It’s getting darker. My voice races, “Where are we going?! Please?? Why are you doing this?”

“To whom,” her eerily voice whispered in the darkness.

My eyes finally adjusting to a light coming from the corner and I look around. There is no one here but me. It’s just me.

©️ Kandi Blaze

This is part of an artfully done nude set I did with Frazees photo stash - Jason Frazee. I absolutely love collaborating with him and his wife, as they push and break the boundaries with their art and photography.