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.