Round 5 threw us a curveball!
First, a quick recap of Round 4, part 2:
Saturday 5/13/2023 – Celebrating Mother’s Day
I made plans to get a pedicure while Trevan and Nick were at a father’s-son’s campout. While I worked to get ready, I determined that I don’t rock the head wrap very well. I decided to find another way to deal with the thinning hair.
While a better wrap COLOR would certainly help, I’m still not loving the shape. I decided to just throw on a baseball cap instead.
Saturday morning pedicure with my Sister-in-laws for Mother’s Day:
Saturday evening date night with my guy to Guardians of the Galaxy 3:
The next day, I tried wearing a hat to church for the first time. Tucked in what is left of my ponytail. I hesitate to share the next picture because it’s so awful, but it IS part of the story, so here you go. Here is what’s left of my ponytail:
Below, this is me with my fancy new church hat. Passable. I definitely feel better with a visor (as opposed to how the head wrap looks on my forehead).
Then, after a peaceful Sabbath afternoon with family, we hit the sack and got up the next morning ready for Round 5:
Monday 5/15/2023 – Round 5 – The Curveball!
Before moving to the infusion room, I had an appointment with the Oncologist to discuss how the last round went. That’s where he always decides whether or how much to change my dosage.
I was super stoked to talk to him because of the clean, apparently cancer-free CT scan I had received at the Emergency room the previous weekend. Both the ER doctor and my GI surgeon had seen it and told me that they could no longer find the tumor. So naturally, I was excited to have my Oncologist take a look and give me his take on it, since he’s the one who would help me make decisions about my treatment plan going forward.
Maybe I could be done?
I knew the CT scan wasn’t conclusive so he would likely still wait until June’s PET scan to confirm, but Trevan and I were both eager to hear some happy, hopeful news about the future plan. We were sure he would be impressed and ready to make some encouraging changes.
So, imagine our surprise when instead, he cautiously advised us that because my cancer was stage 4, he would probably still want me to continue a lower dose chemo, even with a clean scan, possibly indefinitely. Stage 4 can be notorious for coming back, and he wants to do all he can to prevent that from happening.
Chemo… possibly indefinitely?? Trevan and I just looked at each other, wide-eyed. This was the LAST thing we expected to hear, and at THIS appointment, especially.
Ok, let me back up.
About it being “stage 4”.
Up to this point, my oncologist and the GI surgeon have ONLY ever called it stage 3, so this in itself was a bit of a shocker. Even the discharge report from my original hospital stay and surgery said stage 3.
So, this was the first time the oncologist had verbally suggested it might be “stage 4”. Although, I must admit I wasn’t all that surprised, because I already knew my cancer had spread from the original site, and technically, that’s what stage 4 means. I remember thinking early on, “I’m pretty sure the fact that I have another tumor outside of the colon means stage 4, but if the doctors want to keep calling it stage 3, I’m not going to argue.”
Thinking back, though, my original PET scan had said “Metastatic Malignancy”. It didn’t outright say “stage 4”, so we didn’t think too much of it. However, “metastatic malignancy”- I find out later, according to Google – does technically mean stage 4.
Anyway, I’m not going to make the doctor wrong about what sounded like a change of diagnosis. I think the confusion was because stage 3 means the cancer has spread to the lymph nodes, while stage 4 means it has spread to other parts of the body. In my case, the tumor appeared to BE a cluster of lymph nodes, not specifically attached to another organ.
So Monday when he called it stage 4 for the first time (to explain why he might want me to continue chemo indefinitely even after a clean scan), I questioned him about the staging discrepancy and, he said, “It’s really semantics. Whether it’s a high stage 3 or a low stage 4, the treatment would be the same.”
Basically, it doesn’t really matter. I feel like he’s always been careful with his words to help me with my mindset from the get-go. That he did not previously call attention to the “sort of” stage 4 diagnosis, is not a big surprise.
The good news is that mine was only a “regional” malignancy, as opposed to “distant”. There’s a huge difference in prognosis when it spreads to a nearby area instead of to another distant organ. The 5-year colon cancer survival rate when there is regional malignancy is around 72%, while the rate when distant drops to 13%. Again, mine was regional so I’m glad we caught it when we did.
But chemo, possibly indefinitely??
The original plan was to go only 12 rounds (over six months) – with a possibility of stopping at 6 rounds (3 months) if things went well. I remember how my GI surgeon during my hospital stay said, “Six months from now, you’ll look back on all of this like it was just a bad dream.” In my head, that meant this experience had an end date to it. But here my oncologist was suggesting that even if everything goes great, he might want me on an ongoing regimen to keep it from returning.
I had to really check myself at this juncture. Is my doctor motivated by the money he’d get if I am a life-long patient?
It didn’t take me long to decide, that’s a hard no. Not this doctor. I’ve been working with him for four months now and he’s proven time and again that his intentions are genuine. I don’t believe he needs the money, nor is he motivated to make decisions based on that factor.
By the way, at this appointment he accepted my book Portal to Genius and genuinely expressed an eager commitment to reading it.
(What doctor has time to read a book? I’m not holding my breath, but I have found it interesting that right from the start he has made comments or had questions about my writing at every appointment.)
Back to my point, I’m convinced he’s motivated by a clear vision of his own, that of “complete remission” for his patients. “Complete remission” are his words, his goal, and even the name of his blog. I love that he chose the words “complete remission” instead of “fighting cancer” or “battling disease”. Clearly, his focus is on the end that HE intends, and it shows in his work and the way he cares for his patients.
At the same time, I understand why he feels a responsibility to base his recommendation on sound, scientific research and studies. I also know he’s open to new discoveries and advancements – having already talked with me about trials and tests outside of his practice that could potentially point me down a different path.
But his words – chemo, possibly indefinitely – kept ringing in my ears.
When he stepped out of the room, my husband and I just looked at each other and started laughing. “What. Just. Happened??” I lost track of how many times over the next hour we paused, shook our heads, and said those same words again.
So now what?
I’m still committed to not fearing. I’m still submitted to following the doctor’s recommendations until I feel God nudging me in a different direction. But seriously, what we experienced at this appointment was completely opposite of what we expected.
I had to pause and ask myself – WHY have I desired a clean scan? What was that supposed to represent for me? What is it that I really want?
The point of wanting a clean scan was because I thought it would represent the point where I can get on with my life and be fully functional again. If living life functionally is the actual desired result, then does it really matter if I am on long-term chemo, so long as it doesn’t come with all the side effects of the more aggressive, curative chemo?
Then we remembered, “It’s just data.”
In other words, it’s not good, it’s not bad. It’s just data. Dots on a paper. Words in the air. Stage 4 – no meaning. Chemo, possibly indefinitely – no meaning.
But, if this new info truly had no meaning, then why did we find it so funny?
I think the answer is IRONY. After getting such GOOD news at the hospital the week before, it just seemed ironic that we would get hit with something so opposite. But honestly, something about the shock of it helped us see it from a sort of detached, outside perspective.
Could this be some kind of divine test? Are we going to let the new data change the way we think or feel? Are we going to let it cause us fear?
Honestly, anything more subtle might have taken us out, but his response was so unexpectedly over the top, it wasn’t hard to put it in its proper place.
So, in short, we left that appointment with a plan to do at least two more rounds and get my PET scan in June. (He wanted the new scan to show whatever progress or changes there might be a month apart from each other.) He also said he wants to put me in touch with one of his colleagues in Scottsdale for a second opinion.
After that, we were off to the infusion room for Round #5. Four hours later, with my pump all hooked up and ready to go home with me, we were on our way.
An Unexpected Phone Call
At about 6pm that night, my doctor called and basically said, “Leslie, I’ve been thinking. I got the sense that you were alarmed about the stage 4. I have an idea…”
Here’s a message I sent about it to my friend:
Interesting update. My doctor just called me at home and back pedaled on nearly everything he said earlier today. He called my GI surgeon who has seen the scan and they decided to both go present my case to the “tumor board” (???) and get them to give their input on my case. He said we’ll continue with two treatments, get the PET scan in June, and revisit the plan again at that time. 🤷♀️😏 He didn’t exactly retract anything, he just didn’t want me dwelling on it. I have a cool doctor.
To his comment about stage 4 I responded, “Actually, the stage 4 thing wasn’t a big surprise. I was more alarmed by the idea that you might want me on chemo indefinitely, even with a clean scan. All we had ever heard before was that it would be 12 rounds, or maybe 6 if things go well.”
He said, “Let’s just shelf everything for now… the staging, the plan…” He suggested we wait to make any changes or decisions until after he speaks with the tumor board and I get my PET scan next month.
I asked him what he would need to see, to feel like we’ve truly experienced a miracle. What would he need to see, to be able to say I am in complete remission. He explained that it would take time (maybe even years) to show that it is totally gone and hasn’t come back.
That wasn’t really what I hoped to hear, but I understood. I told him how amazed and grateful I am for his thoughtful consideration and taking the time after hours to update me. I said, “I have never had a doctor that was as personal and responsive as you have been.”
So… What caused the course correction?
Did my doctor feel compelled to call me after hours and back pedal a bit because we had (without his knowledge) passed the “shocking news” test? Did our path just shift a little because we did not freak out at the new data input? Maybe, maybe not. But I choose to believe that our response to the news DID have something to do with his decision to call me unexpectedly with a course correction that feels much more aligned with our vision.
That night we enjoyed our weekly Monday movie night with some friends (this time it was Facing the Giants – giving me exactly all the reminders I needed right now. Even though I’d seen it many times before, it landed differently for me this time. If you could use a big dose of hope, inspiration, and faith, go watch it right now!!)
As for side effects, I was feeling a little unsteady, buzzy. My eyeballs burned during the movie if/when I let myself cry. Despite a headache and some tiredness, I felt optimistic. Inspired by the movie, I re-committed to this:
In we win, we praise Him. If we lose, we praise Him. I will give it my best and let God do the rest. I will prepare for a miracle and put it in his hands. I expect to be amazed. God will want people to know it was His victory, not mine.
I find myself observing how this all is playing out with tremendous curiosity. Again, I expect a happy outcome. I expect to be amazed and in awe at what the Lord did with us and through us. I expect to praise Him for all the miracles he performs in our lives, whatever He sees fit to bestow.
But either way, we will love Him. We will also do all we can to avoid being the limiting factor in what He can do for us. We do not want to be the reason He cannot grant our request for “complete remission sooner than is medically expected”. (“…if there be no faith among the children of men God can do no miracle among them.” – Ether 12)
Tuesday 5/16/2023 – Letter to the Doctor
I felt compelled to send a message to my doctor, sharing with him some more specifics about my health goals. I felt it is important to get everyone on the same page so we can all be inspired and guided by a shared vision. I’ll share an excerpt.
If possible, read this before you meet with the tumor board about my case. You said you were here to support me in my goals, so I thought it might be good for you to know what they are! …
I’ve been studying the phenomenon of miracles for over 20 years, how people achieve things beyond their natural control, and how we can invite unseen help to help us beat the odds. We currently run an online school centered on mindset, which provides training to thousands, and where hundreds of students have documented amazing results.
This has been my passion and life’s work since 2000. I also created the Mindset Quotient Test, which makes mindset measurable, and which has been pretty accurately predicting the condition of a person’s life based on their score, with free information that helps people improve their score.
I’m receiving an honorary doctorate next month from a … University back east for my life’s work, including the development of that test. Most of my audience is Christian, but I’ve worked with students from nearly every major faith tradition in the world. After all, the principles are universal.
… I’ve used the principles to achieve many different things, but this is the first time I’ve needed to seriously apply them to a personal, potentially life threatening health challenge. It took me a while to get my bearings and attempt to be more intentional in this new situation. …
[I then shared my daughter’s story about her broken neck, and explained why…] we have come to expect miracles in our family – positive results that defy natural explanation … We don’t get too attached to what those outcomes must be, we just expect that whatever happens, we will be in awe, amazed, and full of gratitude to God when all is said and done. Sometimes God has even bigger, more amazing plans for us than we can even imagine, so we just do our part and watch for evidence that He is demonstrating His awesome power in our lives.
In my studies (amounting to more than 30,000 hours of work, research, and experimentation) I’ve identified a number of key elements or principles, which, when followed, ensure that we, at least, are not the limiting factor in what God … can/will do on our behalf.
… I believe God will always do whatever is best for our highest good in the eternal scheme of things. So, not all prayers are answered, and we acknowledge that that’s not a bad thing. It’s simply our job to do our best and leave the rest up to Him. If he grants our desires, wonderful. If He does not, that’s okay, too. I just strive to do what I can to ensure that MY mindset is not the reason He withholds his power.
There’s a verse in a book called the Doctrine and Covenants that says, “Ye endeavored to believe that ye should receive the blessing which was offered unto you; but behold, verily I say unto you there were fears in your hearts, and verily this is the reason that ye did not receive.”
So that is my main focus – to fear not. I know that the principles can be simple to understand but not always easy to apply. Fortunately I’ve had a LOT of reasons (ahem, problems) on which to practice them throughout my life, and have learned to trust they always result in the best possible outcomes.
Here are some of the principles I use to help me not be the limiting factor:
- Fully understand that the desired outcome may be difficult or unlikely
- Visualize the desired outcome – see the end that I intend
- Imagine how it would feel if it were true
- Choose to believe that it is possible
- Expect a happy outcome – “all that I imagined, or something better”
- Make peace with the present conditions, and even the worst possible outcome
- Fear not – Keep calm and watch what happens
- Identify and take each next right step, no matter how unpleasant or difficult
I also keep these laws in mind to keep my head in the game:
- Law of Perpetual Transmutation – Circumstances and things are perpetually coming or going according to my thoughts. As I believe, the desired outcome is taking shape. When I doubt, it begins to dissipate. Knowing this helps me have patience and hold my vision more tenaciously.
- Law of Relativity – My situation is not fundamentally good or bad until I compare it to something else. I maintain gratitude knowing things could always be worse.
- Law of Vibration – My thoughts control my personal vibratory state. As I change my thoughts and emotions, I tune in to more inspired ideas / solutions and as I follow them, my circumstances naturally begin to change, too.
- Law of Polarity – Everything has an opposite. A bad situation is equally good. There is an equal or greater benefit contained in every adversity, so instead of focusing on the problem, I get busy looking for the promised benefit.
- Law of Rhythm – When I feel down, I choose gratitude, knowing that, by law, there is an upswing coming. I always expect a happy outcome.
- Law of Cause and Effect – Action and reaction are equal, in opposite directions. A positive cause or intention, by law, initiates a positive effect.
- Law of Gestation – I will plant idea seeds, and be patient. I won’t uproot my idea seed with impatience or doubt. When I have a choice, I choose to believe.
… I have a goal to be in complete remission faster than what is generally considered medically explainable. I thought that might be possible by June when I thought the PET scan is all I’d need to prove it. But I’m still learning how this all works. I trust we can still have an amazing outcome of some kind, even if it takes longer than I thought.
I appreciate the excellent treatment and care I’ve been receiving … it’s been amazing. You’ve been inspired at every visit to say exactly what I needed to hear. To me, even our last conversation had divine timing. I don’t know if you were being consciously intentional about it, but IF I needed to hear that chemo might be ongoing for much longer than originally expected, round 4 was the exact right time to tell me so. It was much more tolerable than the others, so I even commented to my husband, “If this is how chemo was meant to be for me, I could do this as long as the Dr. needs me to do it.”
At the end of it all, I intend to look back on this experience with awe and amazement at what God did through us. What He taught us, how He helped us, and what encouragement our story was able to bring to others. I want my story to inspire others to practice the mindset principles, so that their best possible outcomes can be realized as well. I want to help people not be afraid of the medical treatments they need, and to also help them bring their best selves to their battles.
On 4/19/2023 I made the decision to see the tumor gone. To consciously and intentionally apply all the principles to ensure that, if God was willing to help it disappear more quickly than medically expected, I would do my part. Since then, I have deep down felt like it IS already gone, and was looking forward to my next scan. Last weekend’s CT for my constipation was unexpected, but did bring me some encouragement, that the doctors could no longer see the tumor. I look forward to my PET scan next month.
Also, last month I wrote the blog post I will send when I am in complete remission. I wrote it as if it’s already happened, and will just hold onto it and post it publicly when it’s true. Again, I thought maybe I could send it in July, but whether it is in July or 5 years from now, it will be ready.
And if all I’m doing turns out to have no real effect at all, at least I will know I did my best.
(Something else that helps me look forward to a happy outcome is to remember Michael J. Fox’s words: “If you focus on the worst case scenario and it happens, you’ve lived it twice.” If I have to live it at all, I’ll live it only once, thank you very much.)
I then shared some of what I wrote in my last update. I’ll paste it again here:
To Think is to Create
My mentor Bob Proctor told me once that my mind was busy, but that I wasn’t thinking. It took me over a year to understand what he meant by that. To think is to create, and you’re not creating if you are spending your time thinking about things the way they already are, or obsessing over worst case scenarios. That’s the easy path. That’s just mind busy-ness.
To really create, you have to do the hard work, take time instead to imagine things the way you want them to be. It’s about imagining a different outcome than the default future, or worst case scenario. It’s to entertain a new, creative idea, and to imagine how it would feel if it were to actually transpire.
Henry Ford said: “Thinking is the hardest work there is, which is probably the reason so few engage in it.”
Bertrand Russel also understood what it means to “think”. He said: “Most people would sooner die than think, and many of them do.”
Thinking to create something other than the default future IS hard work because of the divine, creative energy it activates. Using mindset to help shape our results is to exercise our God-given creative faculties and operate in the language of faith, the same way God does. He speaks the truth in advance:
“And it came to pass the same night, that the LORD said unto him, Arise, get thee down unto the host; for I have delivered it into thine hand.” Judges 7:9, emphasis added. This was before Gideon’s battle with the Midianites had even begun.
God doesn’t complicate things. It’s usually simpler than we make it.
“Jesus saith unto him, Rise, take up thy bed, and walk. And immediately the man was made whole, and took up his bed, and walked” (John 5:8-9)
He didn’t say, “Here, I HEAL YOU! I fixed everything, do you feel it?” He basically just said, “Be well. Do it. BE it.” In other words, “Accept the healing, it’s already yours.” The responsibility was put squarely on the lame man to act as though it was already done. …
Bottom line, I’m currently at peace with the worst-case scenario, but I am also expecting to be amazed and grateful at whatever God chooses to do with this. God loves to show His power where he finds people willing to let Him work through them. That’s who I am trying to be.
What if the cancer is already gone? HAVE I already learned all that the experience has for me? I’m sure there is still much more for me to learn and experience, but I also don’t believe we need to suffer for suffering’s sake, beyond the point that it has done its job.
Don’t worry – I’m still aligned with doing whatever you think is necessary to prevent it from returning. I just wanted to invite you to join us in expecting to be amazed, however that plays out. 🙂
I’m a writer. I can be wordy, I know.
And I’m fully aware that a busy doctor may not take the time (or even HAVE the time) to read all that.
But it was something I felt compelled to do. By putting it out there, I believe there’s a chance it may do some good in helping him be inspired in my care. If nothing else, writing it out helped ME increase my clarity and confidence. I do hope and believe that the Lord might do something good with it.
Again, I do my best and leave the rest up to Him.
Wednesday 5/17/2023 – Hydration!!
Side effects to this point have been minimal, and tolerable. I worked extra hard to stay hydrated all week, and even though it was looking like I might get constipated again, I received IV hydration when I went back to return the pump. It also helped that I was successfully putting down at least 64 oz of water daily. Not easy to do!
(If you missed my last post, I had landed in the ER Friday after my last treatment and was admitted for two days for severe constipation, so I was paying extra attention to my progress heading toward Friday on this round.)
Thursday 5/18/2023 – In-Home Haircut
A sweet friend paid to have a stylist come to my house for a haircut. My questions for the doctor Monday had partly been to help me decide whether I should be shaving it all off, or going with some kind of a short style. If the doctor had told me that my hair will keep thinning and that there would be a lot more rounds ahead of me, I would have shaved it.
But instead he said that I probably wouldn’t lose too much more, and even if we go on a longer term plan with chemo, the dosage and cocktail would be different enough that my hair would probably start growing back, even while still on it.
So I went with the shorter cut instead of a shave. I also got some new hats from Amazon. Super happy with the style; I’m especially loving how it looks in a hat!
And, for when I’m without the hat, I ordered some scalp color to help camouflage the thinning in front until it starts growing back. This is how it was looking without the coloring spray:
The weather outside was beautiful Thursday afternoon. I had been spending so much time indoors, it just felt good to go sit on my porch while it was cool and windy.
Saturday 5/20/2023 – Getting Back to Normal
Bowels finally back on the move. Whew! No need to go to ER this time!
Pest control was scheduled to come ahead of the annual earwig and scorpion problem, so we spent some time putting our bedroom back in order to not be embarrassing. It’s looked like a hospital room since January with all the supplies and equipment everywhere, and the extra table next to my bed full of medications. It’s also been littered with piles of clothes, papers, and boxes. So it was time.
We cleaned it all up, put all the things away that I no longer need, and it’s really feeling like a regular bedroom again! Improving my environment is really helping me feel like things are on their way back to being normal.
Sunday 5/21/2023 – Eternal Perspective
I had enough strength to teach Gospel Doctrine again – first time since February, I think. My voice was shaky and my hair was thin (and a tad sticky from the colored scalp spray), but none of that matters when you get to participate in a discussion about the Savior’s last week before his crucifixion.
There’s nothing like a study of Jesus Christ’s life, teachings, and ministry to put things back into perspective yet again.
Round #6 is scheduled for next week, May 29th. Correction – skipping another week for Memorial Day I guess. Next round will be June 5!
Until the next update, have a great week!
PS. Thank you everyone for your love, support, and recommendations! I have received many. If you feel compelled to send me a cancer-beating resource, read this first: Why chemo.