Our Kidney Cancer Story and Update

I don’t share this very often or talk about it much with people outside of my family or closest friends, but I wanted to share this today to give you a little glimpse into my life journey and give you an update on life with cancer.

Seven years ago (seven!), in the middle of the night, we would begin a journey that we never expected to be on. Living healthy, working out, getting the right amount of sleep, and eating all the right foods would prove to not be enough and would teach us that cancer does not care who you are or what you do.

It is unbiased and sneaky and has no problem completely taking over your entire life and every thought you have from the moment you are told that it has invaded your body.

A lot of you were here in the beginning when this blog was under a different name and we had just come out of my husband’s first life-changing surgery. He had a tumor the size of a grapefruit on his kidney. A grapefruit! And it had a name.

We were suddenly told he had Stage 4 Renal Cell Carcinoma, or Kidney Cancer, and that my husband needed to get his affairs in order. Excuse me? Yesterday he was fine! Today he is so sick that he may not make it. They had to be wrong.

They weren’t.

All of the should haves and the could haves and whys sped through my brain. What would I tell my kids? Would he ever go home with me? Would I be a widow with 4 children? What will I do?

Looking back, all of the signs of cancer had been there.  He either chose to ignore them or just didn’t understand what his body was telling him. But, based on the size of the mass he had, the doctor told us that this tumor may have been growing for possibly a decade.

So I am going to pause right here with my PSA: schedule that routine annual checkup for you and your partner! 

They removed his right kidney and completely reconstructed almost his entire vena cava as the tumor was growing up it and almost to his heart. That surgery was one where they had to take out all of his organs to do the surgery and then put them back in. Kind of like Humpty Dumpty. Then pray that they will all work correctly.  It was a really long recovery. Once he came home I had to do his home care, which took months. And if I am being completely honest with you, it was really, really hard.

When I walked into the recovery room in the ICU after the very first surgery, and I saw him completely pale and hooked up to everything, I had to walk right back out and catch my breath and try not to vomit. I have never known my husband to be weak or frail. He has always been a big, strong man and he could do anything. Through the first round of surgery he lost 50 pounds.

Radiation wasn’t an option as this type of cancer doesn’t respond to radiation. So he was put on a chemo that was extremely hard on him and we were devastated when 90 days after that incredibly difficult surgery we were told that the cancer had come back with a vengeance with tumors on his liver. It was hiding and blew up when we introduced this treatment.

This is where I get really angry at our healthcare system and I am sharing our experience.  It seems you are not offered the medication or procedure that can actually help at first. It is like you have to start with a bronze medal and work your way up to gold. And all you can do is hope that you don’t suffer too much or lose the fight as you make your way to the treatment that will work.

There are so many chemo options for each type of cancer. We had 7 and had to go through all the levels of treatment before insurance would give him approval for options that would actually work. They make you take the first level of chemo that may or may not be effective to “see” what it will do. Then when it stops working or doesn’t work at all, they will let you get to the next level of more helpful medication.

Let me tell you that unless you can just afford to get to the good stuff right away and are willing to pay without insurance coverage, you have to suffer through each level until it stops working and they “allow” you to advance to better, more effective treatment.

Here is a glimpse: Right now a month of his chemo pills is $40,000. That is roughly $1300 per pill. Just to keep the cancer “at bay”. Luckily we have insurance and have a max-out-of-pocket (which we hit the first month of the year, every year with this), but I don’t know what people do when they don’t have insurance. It is actually disgusting to me and I don’t know how our system is able to get away with it.

Since the tumors had developed on his liver he had another surgery when he hadn’t fully recovered from the last and it would be another long recovery period. They resected 1/3 of his liver and got clear margins again.

If you don’t know, the liver regrows itself, which is amazing!

After that came more toxic and invasive chemo treatments for another 10 months, another long recovery from a surgery that had clean margins, and then we were told that it was back again.  He underwent another surgery to remove his gall bladder and lymph nodes along with another portion of his liver.

After that surgery he was in the hospital for almost 10 days and I didn’t know if he would come home with me. He was in really bad shape and had blown up like a balloon.  Like his liver had stopped working and filtering and he now only had one kidney. He finally got well enough to leave and it was more months of recovery.

Through it all, he has done whatever he has had to do to live.

He even flew back to Indiana every three weeks for his infusions when we moved to Phoenix. He would fly in, stay in a hotel, get to the hospital in the morning for his treatment, Uber to the airport and fly back home. All by himself. Just for the chance to stay alive.

Through it all, he still worked when he really shouldn’t have, supported our family, exercised to the best of his ability even if it was just a walk, and stayed positive.

I have never witnessed a strength like that and it inspires me every day.

To give you insight into his mindset, one day as we were driving somewhere and we were passing a pasture with cows grazing in the freezing winter weather.  I was talking about how he just can’t catch a break and his poor body must be so tired.  As he looked out the window he responded, “at least I’m not a cow.”

That made me laugh so hard for some reason. Just a little humor and strength in the everyday suffering.

All of the chemo has weakened his heart and in 2020 he suffered a heart attack. I drove him to the hospital where they told me I could drop him off and I had to leave. Due to Covid they wouldn’t even let me in the building to speak for him or advocate for him.

It was so scary not knowing if he would return home again and all I could do was wait. And I prayed….a lot. There were no phone calls to tell me how he was. There was no communication and by midnight my fear had turned into anger. I finally found out he was going into surgery and he was going to be ok. He survived that surgery and came home to me.

In 2022, after he had exhausted all other chemos, he was finally eligible for a treatment that would actually kill the cancer. He has had to suffer through it all for 6 years before they would approve this treatment. It was an outpatient procedure where the surgeon took tiny radioactive glass beads and inserted them directly into the veins that the tumor feeds off of. Then, as the tumor feeds on those veins and tries to grow, it sucks in the beads and dies. It is fascinating!!

As of right now there is no active cancer in his body!! Praise GOD!!

He still takes chemo to keep the cancer at bay and heart medication to prevent another heart attack. The chemo gives him painful sores in his mouth and throat, blood draws with shrinking and damaged veins are proving to become difficult as the months and years have gone on, he bruises easily, it takes a long time for his body to repair itself if he gets a sore or cut (months!) and his immune system is compromised.

But, I have a fighter. And because of his fight, he has been able to see our oldest daughter get married and will meet our first grandchild in a few weeks. He has witnessed our second daughter get engaged, our son graduate highschool and thrive in college, and watched our baby girl prepare for highschool graduation this Spring and move on to the next chapter of her life. Soon we will be empty nesters!

Life with cancer has been exhausting and emotionally draining, and there really isn’t any support for the caregivers. But it has made us all look at life differently and made all of the moments we have been given count!

After seven years of being on an emotional roller coaster, my nervous system has to be nurtured back to health as it has caused me so much anxiety. Yoga has been really good for that. But, we are both on the mend and life is good! The cancer is currently at bay, but chemo will forever be a part of our lives. And I say our because it affects us both in so many ways.

We don’t know what will come or what the next scan will show. But for today, we will take what we have been given and be joyful. God’s provision has been enough through it all and it will continue to be so.

This blog is a special place for me to share life with you and continue to grow. I appreciate you being here in my little corner of the internet. Thank you for your continued prayers all of these years.