Maybe you’re wondering why it’s taken me so long to post an update on my journey to health.
I think it’s because I haven’t really been living the ‘drama’ of cancer so much lately. I’ve got things to do, places to go, people to see! Sometimes I have to remind myself that I was ever diagnosed with cancer. During the last two rounds I’ve found myself occasionally thinking, “Wait, what cancer?”
Since I stopped putting my life on hold, the thought of it coming back or not isn’t changing what I’m up to. I hope to be the kind of person who lives life with whatever I’m dealt to it’s fullest, until it’s over. After all, I’m just a traveler inside this Earth suit, along for the ride, wherever it takes me.
However, I don’t feel like I can take full credit for living as though I’m not still battling.
It hasn’t been so much a conscious decision to “act as though” or anything like that. It’s more like the roller coaster of round 6 and 7 was just so intense that it effectively purged the drama right out of me. Incinerated it. And what I was left with, was this: You know what? Whether I’m well or not, healing or declining, it really doesn’t matter. Again, for what there is to do next, none of it even matters.
I stopped feeling the need to “intentionalize” any particular outcome. I’ve already done the work. It’s already in play. I’ve ridden the roller coaster. I’ve faced my fears, and I’ve found peace.
Here’s how it went:
Round 8 – July 3, 2023
Day 1 – 2am thoughts:
Cancer. I can get all tough and angry and fight it, or I can roll with it.
I’m reminded of a demonstration I watched where one person was sitting in a chair with his arms out straight and his fingers interlocked into the other person’s hands standing in front of him. The standing person would push the sitting man’s arms causing the chair to tip back. As long as the sitting man’s arms were stiffly resistant, the standing person had total control over the chair and whether it was tipped or straight.
That first demonstration was meant to illustrate resistance. As long as the sitting man tried to push against the force acting upon him, the standing person maintained total control.
But when the sitting man let his arms go slack, as soon as he stopped pushing back against the standing person’s pressure, the standing person lost all control, and the sitting man’s chair remained perfectly still and unaffected. The standing person could push and twist and shake the other man’s arms all he wanted, but as long as the sitting man didn’t try to fight back or resist, it was like trying to push a noodle. Totally ineffective.
What you resist, persists
This is a powerful principle that can be applied to many aspects of our lives. The enemy loses power when we take life’s blows with grace. That’s why I’m not “fighting” cancer. It’s there (or it isn’t), but I’m just going to roll with it, so it doesn’t have power over me.
It’s such a paradox: surrendering to an external force has a way of rendering it powerless.
If you think about it, and if this is true, then the idea of “turn the other cheek” takes on a whole new meaning when cancer is the opposition. I won’t “fight” it or resist it. I will simply live my life to the fullest and expect a happy outcome, whatever that may be. I’ll strive to simply make the most of the many blessings I still enjoy.
All this is why I love my doctor’s blog name: “Complete Remission”, because the name itself is focused on the ideal outcome instead of on “fighting” or “beating” cancer. He is too busy to update it much, but for me, that he claimed the name alone says a lot.
Mother Teresa illustrated this principle when she said, “I was once asked why I don’t participate in anti–war demonstrations. I said that I will never do that, but as soon as you have a pro-peace rally, I’ll be there.” Thinking this way can really help lead us to that “peace that passeth all understanding”.
“And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.” (Philippians 4:7). This is the true basis for living without fear.
Living life to the fullest
These two rounds were awesome, mostly because I was able to enjoy so much time with family. Here was a visit we enjoyed with some of our extended family:
Round 8 week 1 Saturday – Salt River Tubing with the cousins:
Dinner at Texas Roadhouse on the way home:
Round 8 week 2 Saturday – Boating with the family (and our good neighbor who took us) on Roosevelt Lake:
So all that was a ton of fun, just spending time with family. But since this was supposed to be a health journey update…
I’ll get back on topic now.
Side Effect Notes
I’m still going strong with my new diet plan and feel so much better! Before getting my sugar in check, I was feeling internal tremors several times a day. But since cleaning up my diet, I’ve only felt them a few times per week.
For round 8 the doctor had me on low-dose 5FU with Avastin. Some of my side effects included:
- Temporary queasiness
- Tolerable stomach pain
- Slight general headache (not like a sugar headache)
- Stubborn shoulder pain (usually from one of my ribs that loves to twist out of place)
- Runny nose
In all, though, these side effects were not a big deal and I was grateful I was able to function pretty much as normal.
Not Before My Time
So after my infusion on July 3, the words “it doesn’t even matter” continued to echo in my mind for days. They were there when I woke up in the morning, and they lingered there throughout the day. Of course, I still hope to heal and live a very long life, but I also feel assured that God is not going to bring me Home before my time, and when it IS my time, it will be a wonderful thing to be reunited with Him.
This perspective added to my already deep-seated belief that Earth life is just so short, no matter who you are. We’re all eternal beings with a divine destiny, and this little blip on Earth is nothing but a small moment in the eternal scheme of things. Life is merely an opportunity to see if we will make choices that lead to joy, or misery. It’s ultimate purpose is for us to learn, grow, and ultimately (hopefully) find our way to total joy. And if we live this life well, I believe we’ll be blessed to enjoy those rewards forever.
When I was a teenager, one of my teachers illustrated this concept of “eternal life” by stretching yarn across the classroom and fixing it to the walls opposite each other. She said, “See this string? I want you to imagine that it goes on forever, through the walls, out of the building, and across the sky in both directions until it disappears into the distance and beyond.”
She also marked a tiny dot on that string in the middle of the room. She said, “The string to the left of the dot represents your spiritual existence before you were born. You lived a long time before coming here! The dot in the middle represents your Earth life. Our time here is so short compared to the rest of eternity! See all of the string going to the right, forever? Out the door, disappearing into the horizon? That represents your life after you die.”
You can kind of get a sense of the idea by looking at power lines that continue beyond the horizon. Imagine a single dot on one of these lines representing your time on Earth. Sure makes today’s problems look small, doesn’t it?
Anyway, we were invited to think about the illustration, and how, the way we live on that tiny little dot was going to have a big impact on how we would feel for the rest of eternity. Though I had a hard time comprehending it all, one thing I did take away from that lesson was an eternal perspective.
Having an eternal perspective has served me well. It’s helped me at times make choices that were undesirable or uncomfortable in the short term, but which helped me have more joy in the long term and greater peace of mind about where I was going. I’m not always perfect at it, of course, but I try. I’ve learned that having an eternal perspective means being willing to do the hard things now so that you can enjoy greater happiness later.
After round 8 (armed with the perspective that whether I have cancer or not really doesn’t matter in the eternal scheme of things), I started to fearlessly consider some more of the “what ifs” that I hadn’t really let myself think too much about before. And I even started to get excited.
What’s it like pretending?
Ok, so what if I get to skip old age? Man, that could be such a gift! (Please don’t be horrified that I went there. None of us know when we’re going to die, and I think it’s important to think deeply and fearlessly about being prepared for it, no matter who you are.) As someone once asked a cancer patient, “What’s it like to know that you’re dying?” He replied, “What’s it like pretending that you’re not?”
Around this time I came upon some readings that showed me more soberingly (is that a word?) how serious my condition really is/was/has been. But I was now finally ready to digest the scary numbers. On average, people with my type of cancer only live 2-3 years. Two to three years! That’s not very long.
Of course, that’s just an average, so the statistic includes all who survive and live a long, normal life, as well as those who only last a few weeks or months. So, while my prognosis has been on the better side of things, it’s not guaranteed, and I started to think about all that:
- What if I get to go “Home” in the next 2-3 years? Imagine the welcome party! I have so many people on the other side that I look forward to meeting.
- If my time is short, what would I do with what’s remaining?
- Have you ever wondered what YOU would do if you only had a couple years left?
Live Like You’re Dying
Pondering all this made me think of my friend Shantel McBride who created a class years ago called “Live Like You’re Dying”. After thinking, “what if I only had 2-3 years”, I started to view life with a little more clarity and purpose. Not really much different than how I was already living, but giving less worry and weight to things that don’t matter as much.
Another grim statistic I found was that only about 13.1% of people with stage 4 colon cancer in the United States live to the 5 year mark. Since I was technically stage 4 (or a “high stage 3”), I fearlessly gave myself permission to let that sink in as well. However, since my stage 4 was still “localized” (spread beyond the initial spot, but not very far), the actual survival rate is supposedly more like 72%. I’m not sure if I fully felt the gravity of the 13% number, but I did let myself try.
Again, it’s all just data. I know statistics don’t have to have any direct bearing on what anyone else’s experience will be, for good or for bad, including mine. My experience will be unique, as is everybody’s.
But, what if 2-3 years is all I have left?
I explored the question with fearless curiosity and I surprisingly began to feel pretty lucky. So many people fear death because they don’t know how they’re going to die, and that fear of the unknown makes it all the more terrifying. But what if I get to die from cancer? Taking the mystery out of that piece could actually be something of an advantage. Imagine if your life could be like a movie without any of the jump scenes, where you could just roll with the punches and make peace with the expected, rather than living life braced for any number of other horrifying ‘unexpecteds’.
Now, imagine the scratching sound of a needle coming off of a vinyl record. Wrrrreeek— Because this is where that train of thought ends.
I can now say that I have explored without reservations the “sad” what ifs, and a few more really ugly ones that I didn’t describe here, and was able to find myself feeling strangely joyful and excited about them. I guess this is another reason why I haven’t shared an update before now, because it’s not really good or culturally acceptable to be excited about dying.
There have been other times in my life where things have been really hard, and my homesickness for heaven has been especially acute. So this wouldn’t be the first time that I’ve found myself looking forward to it.
But, I get that that’s super selfish of me.
And I don’t want to be selfish. Dying tends to be much harder on those who are left behind, so while it felt necessary to follow that thought-train for my own peace of mind, it was temporary and I believe it fulfilled its purpose. Now I can get back to creating a long future with my loved ones without the niggling fear in the back of my mind always looking for an answer to those scary ‘what if’ questions.
Since I have my answers, I can put it all to rest. I can just go forward feeling curious about what story God will tell through my life, because I give it to Him. It can go any which way now, and I just get to watch it unfold.
A new vision for the future – the grandparents home
Looking forward to a long life, Trevan and I started building a vision for the kind of home we would love to have for when we are grandparents one day. Where it will be, how close it will be to cycling trails, what kind of land it will be on, what kind of space it will have for family gatherings… it’s important to always have something to look forward to, even when you have no idea how it’s going to happen. There is so much power in dreaming.
Not without discomfort
I’m not saying that my days are now filled with nothing but unicorns and rainbows. Fundamentally, nothing has changed. My health just hasn’t been impacting me the same as it was before.
One time a headache started to come on (sugar headaches seem to be gone, but I’m not exempt from those caused by a hot day on the river or those occasionally caused by chemo), and I didn’t get worried, mad, or fight it. I just pictured myself resting on my side, laying there in my Earth suit like it was a shell around me, while I was just having an experience. I thought, Isn’t it interesting how the headache feels?
Along those lines, this is a really powerful clip. I think I shared it before, but here it is again in case you didn’t get to see it. (It will open in a new window).
Here’s a direct link to the reel. Wish I could embed it but it’s not letting me.
Anyway, thinking about the pain like it was a no-big-deal Earth-suit experience caused it to begin melting away, and (how I pictured it) sort of flow up and out of the suit shell through an open hinged lid on my side. Weird imagery that I didn’t make up – it’s just how I saw it in my head. Shortly after, the pain diminished to pretty much nothing.
I got my Miracle
Anyway, while things aren’t going exactly as I imagined them (I’ve still had a few mild headaches for the reasons mentioned above, and my June scan didn’t appear to be perfectly clean), I still feel like I’m not without a miracle. The miracle to me right now is that I have become convinced to my core that whatever comes of this really doesn’t matter. And because of that, I feel so free. At least for now, I am totally free of worry.
Do you have any idea how good it feels to not worry?? As my girls say: 10 out of 10, highly recommended.
And about life with my loved ones, things may not look any different to them, but I truly am cherishing each moment more fully than I ever knew how to before. I love what the cancer has done for my relationships, and for my confidence. What a gift to discover:
- what I’m capable of
- what the Lord has helped me endure
- what doesn’t scare me any more, and
- what really matters.
What matters is I know that God is real, I know who I am, I know what life is for, and I know that my relationships are eternal.
Deeper Dive Study
During round 8 I read a lot more articles from medical journals, which helped me better understand what the doctor has been doing for me and why. It also helped me understand and maybe even want to continue treatment beyond a clean scan.
Also, researching the real efficacy and difference between maximum dose and low dose chemo helped me feel like the lower, more tolerable doses I was getting now weren’t for nothing. (I had been feeling concerned that if the chemo stopped being awful, was it still killing the cancer? A Meta-Analysis of 6 Randomized Controlled Trials with over 1600 patients showed that low dose chemo was statistically just as effective as maximum dose chemo, without the same toxicity damage.)
Feeling more educated on my condition than ever, I was ready for round 9.
At my appointment for this round, I shared with my doctor how at peace I had been feeling and why. I told him about the articles I had found. In the past, we went to the appointments where sometimes he had to give us difficult news that we weren’t prepared to hear. So this time we said, “We’re ready – we’re at peace. Tell us the worst things we may have to hear so we can avoid any other difficult surprises in the future.”
Of course, Trevan is not as on board as I am about me going Home early, but he has been feeling more at peace, too, so he braved asking the doctor about my life expectancy, outright. The doctor explained that it could be normal if the cancer goes away and doesn’t come back, but if it shows up again, the return would significantly impact my life expectancy. It’s not like having one-time cancer twice where you just beat it again the same way you did the first time. Having cancer return a second time points to resistance, which means it’s usually harder to beat.
So, he gave us the news that even if it looks like it’s gone on my next scan in September, he may recommend that (aside from continuing chemo) we may also want to go in and zap the spot with radiation to help it not come back. I had previously felt pretty fortunate that radiation wasn’t part of my plan, but when he suggested that, I was not bothered. Feeling more energized about doing what I can to stick around for my family and live in that grandparents’ dream home, I said, “I’d be okay with that.”
Of course our actual decisions will be made after we get the scan and prayerfully consider our options. I could always just totally unplug and go holistic. I know many (but not all) have lived long lives trusting in natural remedies and nutrition. So, we’ll just see how we feel at that time. So far, we’ve both felt most at peace with going the medical route while it’s working.
It actually surprised me that I was so readily agreeable to radiation. Where is all this amazing peace coming from?? Of course I give credit to God for that; I’m just grateful.
My doctor seemed almost speechless at how my mindset has changed over the last several months. I explained how I was feeling, how it really doesn’t matter anymore what happens, because it’s not going to change what I do with my time. He just said, “That’s profound.”
It was a sweet visit, I think it may have even been the first where masks were no longer required and we got to see each others full faces as we visited. It sure makes a difference in the connection you can feel between people. At the end he walked us out and we started to say goodbye for now. I went to shake his hand but he reached out and gave me a hug instead.
I got my infusion and pump and we headed home.
This round turned out to be super fun because two of my boys had flown into town for a visit right before our boating trip, and stayed for a few days into my round.
It helped keep my mind off of chemo so I felt mostly normal, just a little tired. Day 3 was probably the hardest because my feet started burning, but the doctor had me take Gabapentin and that solved it pretty quickly.
Surgery has been scheduled!
During round 9 I was finally given a surgery date of September 19. Not as soon as we hoped, but it was the soonest my two surgeons could coordinate, and that’s okay, because it gives me extra time to get strong so the recovery will be easier.
BTW, we’re still waiting for the results of a special test that looks for cancer cell dna in my blood for early detection of potential spreading. It can take 4 weeks to get that back, and it’s been almost that long. We hope to hear about those results at my next appointment in a week.
Pulling the cancer card
A funny moment during round 9 was when my daughter was begging me again for a dog. She’s in college. She lives away from home most of the year. But she wants ME to have a dog so she can play with it when she’s home. I keep explaining that dogs are great, but they’re not just fun, they’re a big responsibility, and I’m not in a place to take that on right now. Besides, I’m only a couple years away from being an empty-nester, and I’m not looking to adopt an animal that will need attention like a child for the next 10-15 years.
Yet, she persists. She begs, sends me pictures, and tries to get her aunt to convince me. She even created a Power Point presentation last year to tell me all the reasons why I should do it, with the promise that she will help out… Except that she doesn’t even LIVE here, so that’s hilarious.
Finally, I had enough and basically said, “You want me to have an extra responsibility, so you can have some fun for a couple hours during school breaks. You can go play with shelter animals whenever you want to get your fix. Plus, I have cancer, so you should be nice to me.” Of course I was joking, but she got a huge reaction from her friends who were shocked to hear about it. They were like, “She pulled the cancer card??!!!”
Yes I did.
I tell my daughter all the time that she can get herself a dog when she has her own place. Her response? “I HAVE TO PURSUE AN EDUCATION!”
Yeah, well… it’s not like *I* have anything going on. 😂
Man, I love my kids, they make me laugh. And that’s good, because laughter is good medicine. So, while the drama may have been incinerated from the cancer part of my story for now, I guess it must live on in other ways.
Thank you everyone for your continued love and support.