No real inspiring lessons here... just a really long (but eventful) update.

TLDR: Click to skip to the bottom if you don't want all the deets.

In August, my oncologist scheduled me for two more rounds of chemo ahead of my September 19th surgery. These would complete the original 12 rounds prescribed back in January. However, my GI surgeon requested that I be off chemo for four full weeks before surgery—and adding two more rounds meant I’d finish too close to the operation.

So, during my July 31st appointment, I brought this up with my oncologist. He said that since I’d only be on low-dose 5FU, it would be okay to finish chemo just three weeks before surgery instead of four. I replied, “Okay… will you just let my surgeon know this is what you want to do?”

He said yes.

Geeking Out

That next week, I found myself diving deeper into medical research. For months, I’d been too overwhelmed to do more than skim the surface of my diagnosis. But now, I felt more ready—and honestly, more curious—to better understand the cellular biology behind everything I was experiencing.

So I dusted off my old appointment notes, and one by one, I started looking up every term I didn’t recognize. I wanted to get a fuller picture and also face my prognosis with a little more clarity.

The more I read, the more sobering it got. I realized how rare my case is—especially with the mass in my retroperitoneum and the unique combo of DNA mutations I carry. There isn’t a ton of research out there about how to treat this specific constellation of factors. One of the most eye-opening things I learned was that, because of at least one of my mutations, it was unlikely that chemo would even be effective.

“In N2 patients TP53 [mutation] was not predictive for an effect of 5FU most likely because there is no effect of 5FU in these advanced patients.”
Source

Somewhere—though I’ve lost the link—I also read that one of my prescribed drugs is only expected to work in about 12% of patients with my condition. Thankfully, it appears I’m one of the 12%.

Of course, researching this stuff always leads to more questions than answers. But I’ve been loving the challenge—it feels like a treasure hunt: identify a key question, search for studies or data, try to piece it all together. It’s been stretching me, my vocabulary, and my mental endurance.

I’ll start with one article, but if I don’t understand a term, I open a new tab to look it up. That often leads to another rabbit hole. And sometimes, new info directly contradicts something I already read—so I keep both tabs open, hoping to eventually reconcile the two. Often… they don’t reconcile. So then I’m left wondering: can I close that tab yet?

Usually… no. I leave it open, just in case I need to retrace my steps before I forget what I was even trying to figure out.

Here’s a peek at what my desktop looked like during one of these deep dives. Note the three layers of tabs across the top:

Here are some of the conclusions I've drawn so far...

Please feel free to skip this next part!

[Start of medical mumbo jumbo]

What follows represents only about 10% of my research. I'm including it here just for my own notes, but maybe it will also give you a sense of how dizzying this has been. Things I wondered:

• Since my TP53 is mutated, is that the only tumor suppressor gene there is? No - I learned there are a lot of different tumor suppressor genes. Tens, if not hundreds. (Another reason why research is overwhelming... there's a lot of contradictory info out there. Are there 1,000? or are there 30?) Sometimes you  have to pay attention to the dates:

The science is always evolving as new discoveries are made—and some of the most relevant articles I found for my situation were only published in the last few months.

Here are just a few of the questions I had during my deep dive:

• If my sample had the TP53 mutation, does that mean every cell in my body has it?
  No. I learned that only the cells descended from the original mutated one will carry the mutation.

• Can other genes pick up the slack if TP53 isn’t doing its job?
  Potentially. p51 is a structural and functional homologue of p53 and considered a candidate tumor suppressor.
  Source

• Can anything help activate p51?
  Micronized Zeolite activates p51, which can potentially compensate for faulty p53. Watch here at 5:38.
  (Yes, I’ve been taking zeolite. I even signed up for wholesale. I’ve been running my own personal trial—started in January based on a friend’s recommendation, paused during chemo since I wasn't sure at that point if it would counter the damage we were trying to inflict on my cells or not, and then got back on it again starting last month in prep for surgery. I've also been boosting my system with other supplements and am still doing pretty well with my diet changes.)

However...

• However, In contrast with the "ubiquitous" (everywhere) expression of p53, expression of p51 mRNA was found in only a limited number of tissues (not the tissues that matter in my case).
  Source

• But, the effects of clinoptilolite [zeolite] on cancer cell lines and in tumors both in vivo and in vitro are primarily considered to be caused by the induction of apoptosis and the zeolite's activation of the p21 tumor suppressor gene.
  Supporting research,
  More here,

• So... good news (maybe)... p21 IS found in colon cancer tissue.
  Source

• But can the micronized zeolite activate p21 with a faulty p53? Apparently so: "While p21 is strongly induced by p53, resulting in p21's important impact on cell cycle arrest, high p21 levels can arise also independently of p53."
  Source

  Also, "p21 in the absence of p53 is sufficient for the downregulation of p53-repression targets."
  Source

[End of medical mumbo jumbo.]

All really promising… but yeah, dizzying.

More About My Prognosis

Since the beginning, I’ve told people “my prognosis is good,” because that’s what I believed—based on the surface-level info I had. According to the American Cancer Society, the 5-year relative survival rates for colon cancer are:

• Localized: 91%

• Regional: 72%

• Distant: 13%

I thought my case was regional, so 72% felt reassuring. And my doctors were always upbeat and positive, which I took to mean they were optimistic about my long-term outlook. In hindsight, they may have just been optimistic about how I’d respond to each next step.

Once I started processing my own mortality, I felt more open to exploring the cellular biology of my diagnosis. As you’ve probably noticed, the more I read, the more questions I had—and the more serious my case started to feel, especially once I started focusing on retroperitoneal involvement.

The info overload was intense, but I couldn’t look away. I was equally fascinated by the complexity of the human body (God’s greatest creation, in my opinion) and the seriousness of what I’m up against.

Why Not Just Trust My Doctors’ Explanations?

There’s definitely a time and place to do that. When I was first diagnosed, it was all I could handle. But now, months into treatment and back on lower-dose chemo, my brain is functioning better. And with that comes a sense of responsibility—to advocate for myself, and learn as much as I can about my own case. After all, shouldn’t I be at least as invested as anyone else?

Catching Up Since My August 3rd Update:

Colonoscopy – Friday, August 11, 2023

This was actually my first colonoscopy ever—back in January I was too inflamed to have one before my colectomy. Prep was rough. I learned an important lesson: always start sooner than the instructions say, and sip the prep drink slower to avoid nausea or panicking at midnight, wondering if it’s going to kick in or not. I think I'd rather be hungry a little longer going into a colonoscopy than to be up all night wondering if I'm going to have to reschedule and do the prep all over again another time.

Thankfully, the drink wasn't anything like this.—it was a clear, flavorless powder I could mix into anything—but 64 ounces of liquid is still a lot. I finally felt cleared out around 2 or 3 a.m., and check-in was just a few hours later at 6:45.

Everything went smoothly—no additional polyps were found, and the nap during the procedure was fantastic.

The doctor took a biopsy from the Hartmann’s pouch staple line (the area that lit up on my June PET scan), just to confirm it was only inflammation. Results would take a few weeks.

Chemo Round 11 – Monday, August 14, 2023

At our pre-infusion consult, my doctor said,

“This will be your last round before surgery, and we’ll stop the Avastin.”

I asked, “So I won’t have another one in two weeks?”

“No, they don’t want you to do that. The surgeon wants you to be off for four weeks.”

Huge relief. I was not looking forward to Round 12—and the Avastin wasn’t being kind. Round 9 had been fine, but Round 10 hit harder than expected. Chemo side effects can be cumulative, and for me, the burning hands and indigestion were noticeably worse.

With the cancellation of round 12 settled, I was eager to ask some questions about my research. First, I wanted to know if the metastasis in my retroperitoneum was considered regional or distant. I was proud of myself for learning how to pronounce "retroperitoneum", but then forgot how to say it there in the office. As I struggled to get it out, he made no attempt to help me. So I started laughing and gave up, jumping ahead to the question part: is it considered distant or regional?

He responded, "It depends. If it's very far removed from the original tumor, it's considered distant."

I said, "Well, the sigmoid colon seems to be close to the retroperitoneum..."

He said, "It is, the only issue in your case is that it is not resectable. That's what I meant before by 'semantics' - whether it is stage 3 or stage 4, the treatment is the same."

So we moved on. Some of my other questions were:

• “Do we have a date for my PET scan before surgery?”
  He said he’d order it that day.

• "After surgery, regarding low dose maintenance chemo vs observation, the studies show that for my case, the chemo delayed PFS (time to disease progression), but had no effect on OS (5-year survival). My concern is about developing a resistance if I stay on the drug. If we do intermittent (observation) instead, and it returns, wouldn't it be more likely to respond if we bring back what we knew worked the first time?" He said we'd likely go to something stronger either way, but added, "That's a good question, I would prefer to do some sort of maintenance plan, but if your next scan and the operative findings are very encouraging, we could consider stopping and watching you."

That would be ideal. I would love to take time after surgery to just work on rebuilding my health. But to feel comfortable with that, I have more research to do. While in January I felt like I was supposed to just go with whatever the doctor recommended, I have more recently started to feel that it is time (and that I finally have the capacity now) to take on the responsibility of knowing, not just what's going on, but what I should be doing next.

After that visit with my doctor, we were off to the infusion room for my last foreseeable round, and we were on our way home.

Round 11 infusion complete, and going home with my pump.

____________

The first day of chemo is usually pretty uneventful—but it always throws off my sleep. I'm typically wired well into the night. And that night, one thing kept cycling through my mind:

The Power of Prayer and Access to Heaven’s Blessings

Just 11 days earlier, my sweet niece had been hit by a car after losing control of her bike in some loose dirt along the highway. The driver swerved to avoid her, but the side mirror struck her head.

The outlook at first was grim. But the outpouring of love and prayers—from friends, family, and the community—was incredible. And her recovery? So much faster than expected.

While we’re still waiting for her broken arm to heal and praying for full sight to return in her right eye, overall, she’s been bouncing back in the most miraculous way.

So I was thinking about all the prayers that have been offered—both on my behalf and for my niece—and how much of a difference they seem to have made for both of us. And it left me wondering:

What about the people who don’t have an army of friends and family praying for them? What if someone really needs support but has no one putting their name on temple prayer rolls? How is that fair? What about the people who are alone or silently suffering? Don’t they deserve the same kind of heavenly support—even if they’re not being prayed for en masse?

At 2 a.m., a thought flowed into my mind, bringing a deep sense of peace. I grabbed my phone and typed it out:

“They have their army on the other side of the veil. Nobody is without it. The prayers and faith we exercise on this side are for US—for OUR learning and growth, to learn how to connect with Heaven and participate in miracles.”

That thought felt true and comforting. It reminded me of this:

“Fear not: for they that be with us are more than they that be with them. And Elisha prayed, and said, Lord, I pray thee, open his eyes, that he may see. And the Lord opened the eyes of the young man; and he saw: and, behold, the mountain was full of horses and chariots of fire round about Elisha" (2 Kings 6:16-17).

And this:

"In the gospel of Jesus Christ you have help from both sides of the veil, and you must never forget that. When disappointment and discouragement strike--and they will--you remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed to come to our protection. They will always be there, these armies of heaven, in defense of Abraham's seed.” ― Jeffrey R. Holland, Created for Greater Things

Setting My Intention – August 17, 2023

By day four of this chemo round, I felt it was time to set another official intention—to get clear on what I needed and wanted in order to feel confident about my post-surgery treatment path.
(BTW—there’s a backstory about why I do this intention journal thing, and how it works, in this podcast episode.)

So I opened a new note and wrote:

What I Needed / Wanted – 8/17/2023

I would love to feel educated, knowledgeable, and confident in the path we've chosen for my health post-surgery. I'm grateful that the Lord guided me to have the right questions and find the right answers for my best, highest good.

I do believe that the Lord wants me to be restored to health. I believe there is a way to receive that blessing, despite the odds, as I discover what He would have me do. I pray that the way will be clear, and that I may have the capacity and motivation to follow it.

I'm grateful that I was given the clarity of mind to compile and present a sound and educated case for the path we've chosen, and that the doctor feels at peace with it as well. His continued support is so appreciated.

I choose to believe that God is going to tell a beautiful, edifying and inspiring story through my experience, and that it will help many of his children have greater success in their health goals, and that they will come closer to him through their own experiences.

Most of all, it is my request that I will feel confident and at peace with the decision we'll make, and ready to present it to the doctor at my next follow-up visit after surgery.

With that intention set, I started getting ready for our upcoming trip to Utah and Idaho, where I planned to continue my research.
I thought I’d have plenty of time to study and gain clarity on my next treatment plan.

Side Effects for Round 11

• Swollen uvula

• Burning fingertips (surprised me, since no Avastin this time)

• Peeling feet and numb fingers

• Some acid reflux and belching

• Headache and queasiness on day five

Taking Nicholas to College – Saturday, August 19, 2023

At the end of the week, we packed up a rented travel trailer to take our son Nicholas to BYU in Provo, Utah.
We turned it into a “visit family” road trip—with stops planned in Boise (to see my folks), Twin Falls (so Nicholas could visit a mission area), Rexburg (to see our oldest sons),
Pocatello (another mission area), Salt Lake City (to see our daughter and extended family), and Lehi (to visit my sister and another son).

Originally, we thought we’d drive straight up through Nevada to get to Boise—a route we’d never taken before—just to make things more interesting.
But at the very last minute, Hurricane Hilary was headed straight up that path, timed exactly when we’d be driving through it.
It sounded adventurous to take it anyway in our Jeep...
But the fact that we were pulling a rented trailer helped us come to our senses.

So we pivoted, headed up through Kanab, and connected with the I-15 instead.

By the time we were an hour outside of Utah valley, our son Nathan called to ask what we were doing. Turns out he and Jacob were just rolling into Utah valley from Idaho themselves. We met them in a Provo Walmart parking lot and enjoyed dinner together in the trailer.

Thanks to the Hurricane Hilary detour, that time with our boys turned out to be really good for the soul, even though we'd see them again in Idaho a few days later.

Here we are in Rexburg, Idaho chillin' at the park:

Pizza/Salad buffet at Pizza Pie Cafe, Rexburg:

Meeting one of Nicholas' former mission presidents and his wife in Pocatello. Nicholas served in Idaho while he waited for the Covid restrictions to be lifted so he could finish in Barbados.

My cute niece in SLC, Utah:

Trevan's brother and wife (these Householder men and redheads...)

At Chick-fil-a, Saratoga Springs, Utah:

Movie night with our daughter, my sister, and brother-in-law:

Parking the little rented rig at my sister's in Lehi:

Stopping for a Sacrament service before heading south:

Stopping at the sand caves near Kanab, Utah. It took too long for us to find the path up to the caves, and actually turned out to be too hot and too difficult for me to make the climb, so we found some shade for a quick picture and turned around:

Between Page and Flagstaff at the crest of the mesa:

Stopped for a night in Flagstaff:

This was the first day I really dug into my research because until this point, I'd just been having too much fun being with some of my favorite people.

It's all so confusing!

We decided to take a gondola trip at the nearby ski resort before heading home:

A very important landmark:

Heading out for the last leg of our journey, on Route 66:

Questions – August 29, 2023

A couple of days after we got home, I sent a message to my doctor:

• Is it okay for me to visit my dentist for a cleaning or treatment? I'm overdue and think I may have a cavity.

• I’d also like to strengthen my body before surgery on September 19th—and potentially beyond, especially if we choose a period of observation afterward. Is there an integrative oncologist or nutritionist you'd recommend I add to my team? I’m just researching options now so I can make a fully informed, educated decision post-surgery.

His reply came quickly:
"You should be okay to get dental cleaning. Let me know if you need an extraction—we may need to check your blood counts before the procedure. I'm putting in a referral for our Integrative Medicine department, and they can see you."

I was thrilled. Having his support in adding someone new to my care team felt like a big win. I knew getting a second opinion—especially from someone trained in integrative oncology—would help me gain the education I needed to make the best treatment decision after surgery.

Observation: A Valid Option

Through my research, I’d come across studies showing that, in certain cases like mine, a period of observation (no chemo) could be a scientifically valid option—as long as the next scan and the surgical findings looked good.

"When compared with observation, maintenance therapy conferred a PFS benefit (HR = 0.58; 95% CI, 0.43-0.77) but no OS benefit (HR = 0.91; 95% CI, 0.83-1.01)."
Healio, 2019

"Although a maintenance strategy with a fluoropyrimidine with or without bevacizumab is preferred over continuous induction therapy for metastatic colorectal cancer, shared decision-making should include observation as an acceptable option, given the lack of significant overall survival benefits."
NIH PMC6990730

"It is generally accepted … that patients with complete clinical responses may discontinue chemotherapy until radiographic evidence of disease recurrence emerges. Although the overwhelming evidence supports the use of chemotherapy in metastatic CRC, a subpopulation with indolent disease probably exists, where observation may not be unreasonable."
Anticancer Research, 2009

After all, low-dose 5FU by itself (maintenance therapy), would be a gamble due to my tp53 mutation:

"Several in vitro, animal and clinical studies have shown that normal p53 is required for the response of colorectal cancers to 5-fluorouracil-based chemotherapy."
PubMed, 2003

Of course, if the upcoming scan showed any signs of growth or spread, then continuing treatment would clearly be the right call. But I was still feeling hopeful—my gut was saying the spot was gone—and I was eager to see the scan results to confirm whether it was really the case.

PET Scan Denied

Right around this time, I was notified that insurance had denied approval for my PET scan, since I’d already had one in June. The request was appealed but denied again. Thankfully, my doctor went to bat for me, and after a few more weeks, the decision was finally reversed.

Pain in the Neck – September 6, 2023

Before we left for Utah, I noticed my neck was kinked. I assumed it was just a minor thing that would work itself out, so I ignored it.

But weeks later, it was still there—worse, in fact—and now causing brutal headaches. Normally I avoid chiropractors and myopractors until I absolutely can’t take it anymore... and I was getting close. But then a thought hit me: maybe I should check with my oncologist first—just to be safe.

When I asked him, he said he didn’t want me getting an adjustment without a CT scan first. So I canceled my appointment and got scanned.

Thankfully, nothing concerning showed up.

Too Much of a Good Thing Isn’t Good — #overthinking

Back to the research...
As much as I’d love to believe there’s an endpoint—some magical place where I finally know enough—I keep falling down endless rabbit holes of data. And while I’ve gained so much, I’ve also discovered just how rare it is to find science that offers a clean, solid, definitive answer about what I should be doing next.

Every time I think I’m close to a breakthrough—like I’ve almost found the insight that ties everything together in one neat little bow—I stumble across something new that contradicts what I thought I understood.

Take the p51 gene, for example. For weeks, I’ve been thinking it might compensate for my faulty TP53. But just today, I found a report that said p51 isn’t “everywhere” like p53. It’s expressed in several tissues—just not the ones that matter in my case. So close, and yet, nope.

Information Overload and the SQUEEZE

The truth is, the data has become too much.
Despite hundreds of hours of effort, I still can’t seem to get it all organized. I’ve been too deep in the weeds—with 40 to 90 tabs open at once, a massive encyclopedia of integrative oncology at my elbow, and a raw DNA report that literally crashes my system every time I try to copy/paste it into a spreadsheet.

As we say in Genius Bootcamp, I’ve been in the squeeze for too long.

My goal from the beginning was to feel educated—and I do. I really do. But now it’s time to pivot from data-gathering to decision-making. I need to be able to move forward in full confidence and peace.

And ironically, sometimes that peace doesn’t come until I’ve gone through the squeeze and finally... let go.

As it is with sponges, sometimes the thing we want can only be drawn in after we've relaxed our grip.

I had a conversation with a member of the science board for Avini Health, the producer of the micronized zeolite, and I was reminded that the body does millions of things we don't understand. Sometimes we have to exercise faith and trust in our divine design, and the inherent capabilities of our bodies. They were designed to heal, and I don't have to understand every gene function or backup mechanism to determine my next right step.

I get that, but when I learned that I was lacking a gene that our immune system relies on to kill cancer cells naturally, I realized that it could have been a fatal decision to rely only on natural remedies to beat this thing. I'm reminded of the moment I heard my diagnosis and felt a calm but assuring sense that I needed to submit to whatever the doctors wanted to do for me. Fast forward 9 months, and I feel a similarly calm but assuring sense that it's time for me now to prepare to make my own recommendations for treatment post-surgery.

It makes me think of The Jackrabbit Factor which tells a story about a man on a road trip with his family, where something inside told him to make sure everyone was belted up. As they rounded a corner, they had a head on collision. When he related the story later to his friend he said, "Those seatbelts saved our lives!" His friend replied, "No, the seatbelts didn't save your life; whatever told you to put them on saved your life."

It's not what we DO that matters as much as the WHY we do it.

That's a principle I've been trying to live on my journey to health. To pay attention to the nudges that help me know my next right step, and not just what to do, but WHEN to do it. Clearly, I needed chemo in the beginning. I'm not so sure I still need it now.

That's why I've been doing all I can to gain the education I need to make a sound decision, but there truly comes a point when it's time to just make the best decision you can, even if you haven't been able to come to a definitive, fail-proof conclusion. Maybe in this case there isn't one, and I'll just have to take that leap of faith.

Running out of Steam 

Anyway, time was running out and I was running out of steam. As if researching cancer treatments weren't overwhelming enough, I was also needing to decide how much of my UroGyn's proposed procedures I would have her do during my surgery Tuesday. There is SO much to figure out. But this quote helped a lot:

Sunday School - September 3, 2023

"What may appear initially to be a daunting task will be much easier to manage over time as you consistently strive to recognize and follow feelings prompted by the Spirit. Your confidence in the direction you receive from the Holy Ghost will also become stronger.

"I witness that as you gain experience and success in being guided by the Spirit, your confidence in the impressions you feel can become more certain than your dependence on what you see or hear.

"Spirituality yields two fruits. The first is inspiration to know what to do. The second is power, or the capacity to do it. These two capacities come together. That’s why Nephi could say, 'I will go and do the things which the Lord hath commanded.' He knew the spiritual laws upon which inspiration and power are based. Yes, God answers prayer and gives us spiritual direction when we live obediently and exercise the required faith in Him." - Richard G. Scott

That's what I need. I need to feel more certain about the guidance from the Spirit of God than I feel about what I'm reading. Actually, when put that way, it doesn't seem so hard. The Spirit guides us subtly, calmly. The scientific study I've engaged in has felt so much more frenzied. Necessary, I think, to come to the best conclusion I can, but how sweet it will be to take the decision to the Lord and see if I can feel whether he ratifies it.

Biopsy Report - Wednesday, September 6, 2023

The tissue sample from my colonoscopy was benign - yay!

This was also the day a phlebotomist came to take my blood for my second Natera ctDNA test, which looks for whether any cancer cells have sloughed off into the blood stream - an early indicator of the likelihood of the cancer spreading to distant organs. The results of my first test three months ago showed zero cancer cells in my blood. We're hoping this one will be the same, but I don't have those results back yet.

I also went to see someone about my neck pain. Nothing I tried was helping. Not the recommended pain medication, nor adjustments (which usually do the trick). So I started using ice packs and ordered a neck brace to give me some traction. The neck brace arrived today but isn't doing what I hoped, so it's getting returned and I've ordered a different stretching device that should be here tomorrow.

Friday, September 8, 2023 - pre-op with UroGyn

We discussed everything she will be doing on September 19th, and if I wasn't already overwhelmed before this appointment, I certainly was afterward. Only because I have between now and then to decide whether to have her to everything, or only some of it. It's a lot, and recovery will be challenge. How much do I really want to be recovering from? Will the benefits outweigh the risks? Yet another thing to research, with conflicting reports to sort through.

Monday, September 11, 2023 - pre-op with GI Surgeon

Since the doctors will be putting me under and taking turns doing their part, I had to meet with both of them to discuss the procedures. This appointment with my GI doctor changed everything.

I think the quickest way to explain what happened here is to share part of the convo I had with my family about it:

Tuesday, September 12th

Hey family, I had my PET scan this morning. It usually takes 2 days to get the results back, but I got a message less than 2 hours later that my results had been posted.

It had a lot to say, lots of jargon. It said the spot we've been working on has not shrunk, so that's a bummer, but it also said it is no longer considered malignant. Nothing lit up as cancerous. So that's really good news! I won't feel like it's entirely over until I can keep my scans clean for the next 4.5 years, but this is a good start.

I also met with my surgeon yesterday to ask some questions about my upcoming surgery next Tuesday. One thing I should probably update you about, is I asked her, "with me being stage 4, were you surprised to see no other polyps on the colonoscopy?" and she came back quick with, essentially, "Let me correct you - you are NOT stage 4. You are stage 3."

(Now, my oncologist has been treating my tumor like it's a distant metastases, which I translated to mean stage 4. So, because of the way I understood it, pretty much all my research has been based on that understanding. Here my GI surgeon is setting the record straight.)

I responded to my son:

So basically much of the 24 pages of notes and links I've been gathering may not even be relevant. I mean, I've enjoyed the study; never have I ever geeked out so much about biology, but I feel like I need to start over. Not really. I just need to sift through it all again and see what it all means to me with this new paradigm.

Anyway, I've been apprehensive about my surgery Tuesday. They are doing a lot of things that will be uncomfortable through recovery. Lots of reconstructing things, pelvic floor repair, hysterectomy, ostomy reversal... about 6 different procedures all at the same time and it just feels like a lot. Recovery time is expected to be about 6 weeks to 2 months.

There are two procedures that I have until Tuesday to decide whether to have them or not. I could use your prayers from now until I recover, to help me make the right decisions in what all I should have them do, that the surgery will be completed without complications, that I will be strengthened in my recovery and that I will bounce back swiftly. Will you guys support me in this?

My son:

Of course we will! Thanks for the update mom. How are you feeling about things in the moment?

Me:

I should be feeling really happy but I'm in this weird place with the surgeon's comments because it's making me question what's real, and how much of my experience the last couple months was what it was because I was operating from a misunderstanding. I feel a little - shell shocked isn't the right word - stunned? No - taken for a ride? Not sure - hard to describe. Reeling? Mostly because I've spent probably a hundred hours poring over medical journals, learning really hard stuff, new vocabulary ... cross referencing everything.... about the wrong thing.

My son:

Ah yeah that totally makes sense. I’m sorry! Is the ‘experience’ that different between the stages? I understand that what they mean is different, but what about the experience of it?

Me:

I'm not mad... just ... ugh can't find the right word.

My son:

Disoriented or bewildered?

Me:

YES! Bewildered is perfect.

Well, stage 4 historically has been a terminal diagnosis, incurable. In recent years it hasn't been as much of a death sentence, but life feels different when you think odds are not in your favor.

...Stage 4 means it's spread distantly to other organs and the rest of your life can be expected to be a game of whack a mole, hoping to kick each new spot before it kills you. Stage 3 is where it's only spread to some regional (nearby) lymph nodes. Prognosis is much better. Still serious, but odds are definitely higher for a complete recovery.

The confusion in my case happened because mine did spread, but only to some nearby lymph nodes, one of which was inoperable. That's the one we've been working on shrinking. It basically sits on a major vein, so the surgeon didn't dare cut it out.

My oncologist has been calling it a metastasis, which generally means it's spread to a distant site. But according to my GI surgeon, it's not a metastasis. Technically it would have to show up on something like the liver or lung to be called that.

As far as the "experience" - the chemo treatment would have been the same. It's what goes on in your head that is different. That is, until the Stage 4 cancer starts affecting other organs, then I'm sure it would physically feel different, too.

My son:

Oh dang yeah that makes sense. Btw ChatGPT gave me “bewildered” 😂. I’m sorry you had to go through all of that mentally 😢. Although you aren’t sure how to feel right now, do you see a hope for the mentality shift in the future?

Me:

Yeah, I just need to let the news settle. Meanwhile feeling anxious about the surgery. I can see the light at the end of the tunnel maybe around mid October.

My daughter:

Could it turn into stage 4 or do the stages stay kinda the same?

Me:

It could turn into stage 4, which is why they will be monitoring me for a total of 5 years. After that, if there haven't been any recurrences, I'd be considered in the clear.

My daughter:

Wow that is so much

My son:

You said that the spot they’ve been focusing on hasn’t really shrunk, but I thought that each scan looked like it was shrinking? To the point we couldn’t really notice it?

Me:

I've had 3 scans. First scan it was 3cm with a SUV max score of 5 point something. (For my type of cancer, 2.5 or above is considered cancerous... it's how much of the radioactive stuff is detected in the spot. Or something like that.) My second scan it was about 1 cm with a SUV max score of I think 2.6. Then this last scan it was still 1 cm but the SUV max score was 1.9. I'd have to log back in to confirm those numbers but that's what I recall.