The last 3 weeks have been a ride.
I would love for all my posts to be nothing but uplifting, inspiring, and full of good news. But I’m not even sure yet what I’m going to say for this one because, while it was easier physically, it was much more difficult emotionally.
Before starting Round 6 on Monday, June 5th, we met with the doctor to report on how the previous round went.
In short, I told him it wasn’t bad, but some of my quirky side effects hadn’t resolved by the end as we always hope they will. Nothing awful or debilitating, just things like: feeling shaky or weak, feeling like a train is rumbling nearby but I’m the only one feeling it, or my tongue getting tripped up in the middle of a sentence. Not your typical neuropathy, but suspected to be a version of it, anyway. He asked if it was causing me to drop things and I said, “No, but my fine motor skills are definitely not what they used to be.” Precision and strength is down.
He seemed concerned about that, so he decided to give me my next round sans the strongest drug (which he’s been reducing each round previously). This time he stopped it altogether to give me an even bigger break.
It’s interesting, with lower doses, I’m able to function, but still not at 100%. When I couldn’t function at all, I didn’t really even try to. I’m not sure which is easier — feeling awful and not trying to do anything, or trying to do everything but having to go slower than I want. It was frustrating.
Anyway, here we are during the infusion, helping people with their school login issues. It’s been like playing whack-a-mole trying to solve all the login issues over the last few weeks.
(Our site had been running too slow, so we hired a developer to fix it, which he did. But those changes also created an issue where a large number of our students couldn’t see their lessons unless they cleared their cache, and logged out/in again. A simple solution, but annoying for those affected by it. So sorry for the trouble, everyone!)
Round 6 is in the books!
Since the doctor removed one of the drugs, my infusion only took 2 hours instead of 4, so we went to see a movie on the way home:
I pretty much sailed through Round 6. I only took the anti-nausea medication for a day as a precaution, but determined I didn’t really need it after that. (I did have one more dose a few days later when I started to feel like I was on the verge, but that was it.)
Being off the anti-nausea medication also made it easier to avoid constipation. So, for the most part, it was a great round as we counted down the days to my next PET scan the following week.
Week 2 of Round 6
On Tuesday June 13 I enjoyed a visit with some dear friends from our last ATI group. Some even flew in from around the country for the happy reunion:
That may have been the most social I’ve been (outside of my own family) since my diagnosis. It was so good for my soul. I haven’t laughed so much in a long time.
The next day, we welcomed our daughter home from teaching English in Thailand for the last three months:
Anticipating my PET scan
With all the good things happening that week, I remained focused on getting good news from my upcoming scan the next day. I didn’t pay a lot of attention to the increase of aches and shooting pains in my abdomen and pelvic floor. (I had felt them last fall before my first diagnosis, but they had gone away after surgery.)
I figured they were just digestion issues from not eating more carefully, or ligaments pulling from unresolved prolapsed organs, both of which were already on deck to be addressed once the cancer is behind me. The PET scan would help us know how soon we’d be able to shift gears. We were eager to see what effect the chemo treatments have had on my condition.
Up until the day of the scan I had really pumped myself up for great news. I could imagine ourselves celebrating a clean scan. But when the day of the test finally came, it hit me — this really could go any number of ways.
Maybe I was feeling weaker because I had woken up with a sore throat the day before and was still battling it the morning of my scan. I wondered, “What if I’d been wrong? What if it isn’t gone like the CT scan had shown last month? What if the cancer has spread throughout my body?”
(Oddly enough, the last time I remember having a sore throat was the day before my February scan, too.)
As I sat in the waiting room I started to spiral with all the what-ifs. I took some deep breaths and prayed for help to be calm. I tried to pull myself together by returning to our vision and restoring my peace. Regardless of what the outcome would be, returning to calm was still my responsibility and within my control.
I didn’t want fear to disqualify me from a miracle if God saw fit to grant me one (see D&C 67:3). So I repented, trusted, and chose to believe the best possible outcome was still unfolding for me. To get back on track, I opened my phone and created a note. Time was short — they could have called me in any minute, so it was just a disjointed throw down of my thoughts. I’ll flesh them out here so they make more sense:
I need to come to peace with the potential of needing long term treatment. Lord, help me get there before my scan.
When nagging fears won’t leave me alone despite my vision, I do a few things. I try to return to gratitude with feeling, answer the nagging, fearful what-if questions without emotion, and then let go. I wrote:
Rather than continue to spin, I choose to shift my thoughts to gratitude to my doctor for dedicating his life to saving others’ lives. While nobody is perfect, I acknowledge that he has invested years of his life and has sacrificed more than I know to be where he is, doing what he’s doing for me now.
I know what it’s like to give my life to a cause I believe in, and I am grateful that he has given his life to this cause that saves lives. His dedication has already benefitted me and many others. People are still alive today who otherwise might not have been, because of his diligence and dedication to know as much as he knows. I am grateful.
Now I was ready to face my fears:
Come to Peace with Worst Case Scenario
To qualify for the best possible outcome, I believe I must first come to peace with every possible unwanted outcome. So here goes… If I must battle this the rest of my life, I will live with it and make the most of it. I’ll stop wishing it away and try to be like my friend who has lived with stage 4 pancreatic cancer for the last 25 years, continuing to contribute and losing himself in serving others. I’ll keep working to make the Rare Faith info easy for people to find and digest. I’ll continue to create opportunities for others that work and make sense long term. I’ll love and serve my husband and family, and work to develop in myself more of the attributes of Christ.
In short, IF the cancer is not gone, then I’ll just have to shift gears to let the battle run in the background of my life instead of always being in the foreground. There’s too much I need to be doing. I’ll find a pace that allows me to stay in forward motion.
Lastly, I gave it to God.
His will, not mine
This is God’s story not mine. He can do whatever He wills for my life. If He wants to include a medical miracle in my story, I 100% welcome it. But if not, I ask for the strength and comfort to match or exceed whatever He needs me to experience.
All this or something better.
Once I had noted this much (or at least my cryptic shorthand version of it), I felt more calm and my prayers changed from asking for a clean scan, to again simply wanting good news. I had already set the clean scan intention solidly before and I knew it. Trying to do it again felt something like a vain repetition, so I moved on, trusting that the first request/intention was still in effect.
PET scan prep
They called my name and put me in the prep room where you get the dye and have to hold still for 45 minutes. I took a nap and listened to Kenny G on their wall CD. Then they put me in the scanner for 30 minutes where I took another nap. I guess I had been successful enough at calming myself down.
After it was done, I thought some more about what I really want. Obviously, to be well, but I also wanted to identify some bite-sized benchmarks along the way that might help me stay encouraged. I had an idea to imagine experiencing something simple like a God-wink that could assure me He is still mindful of me.
So I thought, “I would love to hear one of my healthcare providers say the word, ‘remarkable’ about how well I’m healing.” But then Trevan said, “Well, in the medical world, the word remarkable is usually a bad thing…” Haha — he’s right. Whoops! Let’s not ask for that.
(Years ago one of my family members had a brain scan looking for the root cause of some arm movement challenges, and the report said her brain was unremarkable. She joked like it had been a blow to her self-esteem, but in medical speak, it meant there was nothing wrong to remark about her brain.)
So I just decided to hold the more generic intention of getting good news. That felt better.
Let the scan be clean, or let me find a way to move forward, anyway. Help us find a plan through which I can continue to function and live a rich, fulfilling life regardless of the outcome.
I also felt that it was wholly appropriate to ask for gifts and blessings to overshadow the difficulty, if the difficulty would not be removed. What if I could look back on all of it and be amazed and grateful that the comfort, love, strength beyond my own, and any other unknown blessings turned out to be SO worth the challenge, that I would feel nothing but grateful for it?
Our wedding anniversary
That evening we headed out of town to celebrate our 32nd anniversary a little early, since the cabin wasn’t available on the actual day. The plan was to get our minds off of cancer and just enjoy some time together out of the heat.
So nice to be in cool weather!
The PET scan results
They typically send me the report a few days before my next appointment, although I’m not sure it’s always good to see a report before the doctor can explain it. Mine arrived Friday while we were at the cabin. Upon opening it, I read the summary:
Significant improvement in the left retroperitoneal mass. New moderate uptake along the Hartman’s pouch suture line.
Sigh…. Tumor NOT gone.
It did appear significantly smaller (about 1.2 cm instead of 2.7 cm), but it wasn’t gone. PLUS, there was something new that wasn’t there before. My heart sank.
(February 2023 scan) BEFORE:
(June 2023 scan) AFTER:
Another slice showing the new spots, with the old one not even visible:
When I saw the new spots, all my plans to think right went out the window. I should have just been grateful that the 3cm mass had shrunk so much, but all I could think about were the “new spots”. 😭
I guess God’s answer to my prayer for a clean scan was, “No, not yet.”
Before long, I was in a full-blown spin, that the battle is NOT over. My mind raced:
What about the people following my story? What if there will be no miracle to share? Who was I to think I could expose my journey, and not set myself up for a very public failure? What’s the point of being here? How long would it take me to go Home if I stopped trying to fight this? (Yes, I was feeling overly dramatic and sorry for myself.)
I genuinely believe miracles can be realized more abundantly when we align with God’s laws and face our challenges without fear, and I’ve wanted to show how that looks as one unfolds. But I kept spinning:
What if this whole experiment flops? What if I ate too many of the wrong things during treatment and that’s why it’s not clean? (More about that later.)
Even with all my disclaimers — that whatever the outcome, at least I’ll know I did my best, and that even if there is no miracle, I can trust that the best possible outcome would be realized — this non-clean scan left me feeling exposed, embarrassed, and I wasn’t sure how I would share the update.
I went to bed feeling pretty defeated and hopeless. Tired of chemo and devastated that something new had showed up despite my treatment, I started googling medical terms from the report. I discovered that the new FDG uptake at the staple line where my colectomy was performed is a well documented phenomenon affecting about 1% of the patients (look how special I must be 🙄). But sometimes it shows up on a PET scan as a false positive.
Another report said it could be stray cancer cells that got trapped in the staples during the original surgery when they removed my softball-sized mass back in January.
Either way, the good news about its location is that when they put my colon back together again, it should be no big deal to just trim off the questionable tissue before sewing me up. Feeling slightly less worried about the new spots, eventually I fell asleep.
The next day (Saturday) I was finally ready to start looking for the hidden benefit in what I felt like was bad news. The scan wasn’t clean. We’re promised by the Law of Polarity that if something appears to be bad, then contained within the experience is something equally wonderful. Thankfully, it didn’t take me long to find a silver lining.
Maybe the new uptake at the staple line — being unfortunate but not terribly alarming — is all that is needed to give the doctors a justifiable reason to open me up again to trim off the new spots, and potentially remove the remainder of the existing tumor. It had been inoperable before, but maybe now that it’s shrunk so much, maybe this ‘setback’ is actually the fastest path to a clean scan.
I started to feel excited about those new spots, and I also counted my blessings that there were no new lymph nodes or organs affected. This was plenty to be grateful for!
The rest of Saturday was filled with fun and adventure. We had breakfast at the ski resort restaurant:
Helped some more people with their login issues while we waited for our food:
Reflected on a historical marker:
Took a ride up the ski lift at Mt. Lemmon:
Had a bear sighting:
More to learn?
As I entertained the hope that maybe the new spots could put me in surgery for a clean scan sooner than later, I wondered again if I had learned yet all I was supposed to learn through this experience.
I understand there is still gestation — nature’s required time for every seed to sprout and bear fruit. This isn’t just a story of cancer, it’s a story of changing me. Have I yet learned what I needed to learn? I’ve had my doubts because I haven’t felt very changed.
But what I’m about to say next is not something I planned to share. Still, it’s part of the story, so here we go…
Because I had been feeling depressed and defeated the day before, I indulged in a lot of junk food, snacks and treats. I know better, but our anniversary seemed to justify it, plus I had been craving comfort food because of the worrisome scan.
I’ll be honest, I’ve turned to comfort food far too often since being diagnosed with cancer. To get through chemo, one nurse advised me to just eat whatever sounded good whenever I could, because you never know when you’re not going to feel well enough to eat at all. While I knew I should have been following a perfect diet of nothing but perfect foods, I didn’t have it in me to make that transition. Food tastes different on chemo, and I was just grateful when I could find something that wasn’t repulsive.
I was feeling too sick and overwhelmed to take on any major diet changes. I figured, once I was off chemo and the cancer was gone, that’s when I’d focus on fixing my eating habits.
Yes, I’m aware that sugar feeds cancer, but living in physical and emotional survival mode, I had to pick my battles. I thought, if this awful chemo isn’t strong enough to kill the cancer despite an occasional PB & J sandwich or cookie, then maybe I’d just rather die. (Trevan doesn’t like it when I say stuff like that, so forgive me for putting that here — I’ve retracted those words and try not to say such things, but I’m including it here because it’s part of my story.)
I worry about judgment from those who have already conquered their health and eating weaknesses. That’s why it’s scary to admit all this, but I’m sharing it anyway because it has what I think is a happy ending.
One thing I’ve dealt with for many years (even before my cancer diagnosis) is headaches. I know it has something to do with food sensitivities, because I’ve identified a few things that really trigger them. Safflower oil, for one. Ritz crackers. Hard boiled eggs (but not scrambled or fried). Certain brands of breads, but not others (where “healthy” versions sometimes do me worse than standard, non-special wheat). Even broccoli triggered it once, which was super confusing. And too much sugar, for sure.
When I eat clean, I generally don’t get headaches. But if you’ve ever tried to eat clean (meaning, unprocessed foods, avoiding sugar), you know how hard it can be to not get discouraged by the fact that crud is so easily available, and the more worthy stuff can take longer to find and prepare. If you’re juggling a lot or if you’re always on the go, it gets even harder. Especially when purer foods aren’t appealing.
Some time ago I saw my oncologist after a particularly difficult round (with headaches that felt worse than chemo), and since pain relievers weren’t working, he prescribed a narcotic. But since I’m dealing with a sugar / food addiction, I felt like it would be foolish to escape the pain with another addictive substance. He prescribed the drug but I never used it.
Side effects of chemo, or sugar addiction?
If I’m being honest, over the last 6 months, many of my physical ailments can’t be blamed on chemo. Of course, it certainly makes them worse, but the buzzing, headaches, fatigue, brain fog… I was dealing with these things to some degree even before I started chemo. I got headaches if I consumed too much sugar, and I got headaches if I stopped consuming sugar. Sometimes withdrawal can be just as difficult as overdosing.
For the record, I don’t binge all day on candy bars or anything like that — yes I’ll have treats for special occasions, something sweet after a meal, snacking during shows — but more than that I’m talking about the sugar that is everywhere in normal, every day things, like ketchup. Peanut butter. Spaghetti sauce. Salad dressing. Drinks. Even chewable vitamins. It can be frustrating when everyone else seems to be fine eating the “normal” things that I have to scrutinize so much, or find replacements for. I generally stick to water for my drinks, but most of the time I just eat what everyone else is eating. It’s a problem.
I say all that to say this…
On Friday when I had been feeling so devastated about my scan, I turned to comfort food. Pizza, chocolate, kettle corn, licorice from the Summerhaven marketplace (shown below), and yes even Ritz crackers (I tried the baked version, in hopes those wouldn’t take me out… but they did.)
For a while I seemed to be getting away with my indiscretions, but then Saturday morning I felt a slight headache coming on. We drove down the mountain to attend a wedding and I had a small slice of cake. Again, I was still feeling excited — happy about the new spots on the scan and how they might lead me to surgery sooner than later — but the headache was growing.
The facts hadn’t changed
While we were on the road a thought occurred to me, I had been absolutely miserable with worry and discouragement about my scan. But the next day, I had become excited and optimistic about the same scan! The facts hadn’t changed; the only thing that had changed was the way I was thinking about it.
Reality stood still while my head spun about all the different possibilities. Life wasn’t messing with me, it was my thoughts about life that were messing with me.
But I can choose what I think, and shape future outcomes. Life is really lived in the head. What our experiences mean and what we feel about them is really only a construct of our own imagination. Even this post is nothing more than me creating a story around — and adding a whole lot of meaning to — some basic facts.
I’m reminded that in any given moment, what IS, is just what is. Inherently, the facts have no meaning until I assign meaning to them.
In THIS moment, I am alive and well. I am fine. I have all I need. I only got hijacked and fell into a depression when I started worrying about future what-ifs, which may or may not even happen.
God had truly provided everything I needed for THAT moment.
So I need to remember to live in the moment every day, and be grateful.
Here’s Trevan and I leaving the wedding:
On the way back to the cabin, we were followed by the Mandalorian:
He passed us and later pulled over so I was able to snap a better shot as we drove by:
By the time we got back to the cabin Saturday evening, my headache was out of control. I don’t remember my headaches ever feeling that bad. I was angry at myself for pushing the limit and ruining the rest of our weekend. These headaches can sometimes take 2-4 days to fully resolve.
Trevan was compassionate, doing what he could to relieve the pain. Pain reliever doesn’t work but cold packs do take the edge off. We didn’t have an ice pack at the cabin so we used a cold, wet wash cloth.
Prayer for comfort
My optimism about the scan faded as the swelling pain in my head grew. I started to worry again that I’d go to my appointment Monday and the doctor would say we should just let chemo finish off the tumor instead of trying to cut it out. I’d rather cut it out!
I maneuvered to my knees and tearfully asked God to send the Comforter. I said, “You promised that you would not leave us comfortless.” My calmness increased immediately and I no longer felt the need to cry. From there, I just laid in bed fighting the headache and feeling sorry for myself that food does this to me. It didn’t seem fair.
Fresh courage take
In that dark place I was given new courage. I finally found the determination to TAKE ON my diet, even BEFORE the cancer is gone. The pain was so bad, any unworthy enticement lost its appeal and I knew there would be no easier time to make a quality commitment than in that moment. Some people are strong enough to switch diets as soon as they are diagnosed. I was not one of them.
Eventually I fell asleep and woke the next morning not even tempted by the spread of fun things we still had around the cabin. It just wasn’t worth it anymore. I had been praying for the desire to do better for years, but wasn’t ready to change until I saw the scan which appeared to indicate that this cancer journey may take longer than I hoped, while also enduring a horrible headache.
I decided that I can no longer wait for things to be different before *I* start being different.
I can do this
I looked back at the different challenges I’ve faced in my life, and how much determination I needed to overcome those. I don’t have a solid track record of being strong and healthy, but I do have a track record for overcoming other things. It’s time to bring that same dedication, determination, and commitment to this change.
Answer to prayer a long time coming
This is not a new struggle for me. It’s just taken me a long time to admit that it’s a bigger problem than I’ve wanted to believe. It probably even contributed to my getting cancer. (Why can so many other people eat crap and not get cancer? Pity party lingering a bit… sorry, I digress.)
Anyway, as I was searching for a copy of my patriarchal blessing on my computer, I stumbled onto the following note from 3/22/2022:
Studying Come Follow Me with Jared Halverson’s podcast. Lesson about Pharaoh not letting the Israelites go is like saying we will let go of our sins but really wanting to keep them close.
I have a sugar addiction, and part of me remembers what it was like to be a youth and making permanent choices that I never compromised. I used to be good at that because I was very black and white. Now that I am more understanding and patient with myself and others (understanding better the role of mercy and the power of the atonement), I also find myself being easier on myself, and feel like I’ve lost that black and white ability to cut things off forever.
Prayed for help, knowing I need a perspective shift. I know I would feel better if I found what I should do — something that is actually possible for ME in a culture that really values treats….
Last night I dreamt that my house was hosting a bunch of people, and a little girl (someone I see often in stock photography) was sick in bed with a cold or covid. I walked past and she wanted to talk to me. … I backed up because I didn’t want to be breathed on, and she was a little bothered by that. But then she told me she noticed I was still using a deodorant that had three toxins in it. I told her that I bought the one that promised not to have them, and she disagreed, saying that it still has the 3 it shouldn’t have.
Then she started to point out how she has been making right choices, and look how thin she is, and then she pointed at my middle and gently said, “You can do better”. I was of course bothered by her telling me what to do so I thanked her and left, annoyed.
Then we were in a larger building like a church but it was more like a campus with sidewalks between everything and I was sort of setting up for a banquet with food and drinks near every building. I lent my favorite serving trays but they got lost so I spent most of the dream looking for them. Meanwhile, all the food everywhere looked good but I didn’t dare eat it because it had been left out and some of the fruit had bugs in them.
The girl showed up again and was pointing out how unhealthy I was, reminding me I could do better, and saying, “That’s why I nominated you.” For what? Not sure. But some other woman walked up to me as the girl left and said, “That girl is famous.”
I don’t know what all that means but I didn’t wake up with much of an appetite…
I just pray to find the decision I need to make and have the strength to make it despite our culture. Sugar is in nearly everything nowadays, so to avoid it perfectly may not be possible.
I have a friend who gave up chocolate 21 years ago and hasn’t missed it. I aspire to be more like that.
Wow. I wrote that nearly a year and a half ago.
A blessing in disguise
Finding that note was a gentle reminder that I’ve been praying for help for a long time. Most of the time it’s, “please help me to want to want to.” And now, the answer finally showed up in the form of a headache.
But headaches alone had never been enough before. Even a cancer scare alone wasn’t enough. I guess I’m just so stubborn that it took both happening together to finally slap me ready. Together, they gave me the impetus I needed to make the necessary quality decision.
It would still be a while before the headache would be gone, but at least I was finally pointed in a better direction. I can tell when I’m only wishing for a change, compared to when I’ve made a quality decision. (I’m already feeling stronger now that it’s been a week. I’m also down 4 pounds.)
Trevan took this picture after we got home Sunday night.
Peace on the path
Occasionally I’ll still get messages from people about various alternatives to chemo. Sometimes their comments strike fear in me that maybe we’re supposed to do something different, and other times they just get me thinking and researching more. But in every case, Trevan and I consider the options and keep coming back to what we feel is the wisest next steps for us. Everyone is different and responds differently to different treatments, so all we can do is proceed with what both Trevan and I prayerfully feel best about. It does a lot for my confidence when we come to the same conclusion.
As we were preparing to leave the cabin, Trevan prayed that the doctors would be inspired do no more, and no less than what I need. His words left an impression on me. Yes, that’s all we want, and I felt assured that Trevan’s request was the Lord’s will, too.
So now, although we’ve been doing a few more naturopathic things to supplement the plan, they have not replaced it. If surgery can remove the last of the tumor, then we’ll revisit our options again at that time and make some decisions.
I still had some anxiety about potentially hearing the doctor say I should continue with chemo instead of having a surgery, especially after I saw his note that said, “Hi Leslie, tumor appears to be shrinking nicely with treatment. Look forward to discussing details at your next appointment.” His words, “with treatment” were not lost on me. At least, if I need to continue chemo, my diet changes alone should make a significant difference in how I feel through it.
Trevan and I committed to each other that we would both wait to feel good about the doctor’s plan before proceeding, otherwise we were prepared to put the brakes on, get a second opinion, or do more research until we did.
Monday, June 19 – Meeting with the doctor
Before heading to my oncologist’s appointment, I called my GI surgeon’s office to ask if I could talk to her about surgery in case it could help me get the ball rolling. I explained the situation to the scheduler and she said she would get back with me.
At the oncologist’s office, I was supposed to meet with him about my scan results, and then have another chemo infusion. But I didn’t want another infusion. I wanted surgery. Nevertheless, with my new commitment to eating better solidly in place, I headed into the appointment ready to face whatever the outcome of our conversation would be.
The doctor came to the room and asked how I was doing. I reported that the last round was definitely much easier than the others, but some of the quirky issues were still lingering. I wanted to give him all the reasons I could think of to justify skipping chemo this week and sending me to the OR instead, lol. The surgeon needs me off chemo for 4 weeks before she operates, so I at least hoped to get that clock ticking. I reported:
- Shooting pains
- Heart racing
- Hot flashes
- Night sweats
- Clumsy tongue
- Difficulty swallowing
- Shaky hands
- Fine motor issues
- Vision blurry
And, he took note.
He recommended body scan meditation to help with the heart racing since he knew I didn’t want meds for anxiety. Then we talked about the PET scan. He said it was great news and expressed confidence that the new spots were probably only inflammation, not malignancies. He said it’s an unusual place for my type of cancer to spread, but he would defer to my GI surgeon for her assessment.
I found myself actually feeling disappointed that he didn’t think it was cancer (how twisted is that??), because I thought it would mean he wouldn’t think surgery was urgent.
I said, “Well, if I had my vote, I’d love to have surgery as soon as possible, to trim off the staple line, reverse my ostomy, and see if the surgeon can also take the rest of the tumor out. I would really like to do it before chemo has diminished me so much that it’s hard to recover.” (They’re also going to be fixing my prolapsed organs at the same time.)
Supportive of surgery
He replied that he would support it. He said he’d talk to my surgeon to see if she thought she could go after the tumor, and that he would also present my case to the tumor board to get everyone’s input on what they collectively think the best course of action would be. Until a surgery date is set, though, he’d still like me to continue with chemo. But, because of the lingering side effects, he’s going to remove another drug from the cocktail (his idea) and just keep me on a low maintenance version until after surgery. (I’m remembering Trevan’s prayer and feeling like it was answered, that the doctor would be inspired to do “no more, and no less than what I need”). He also set me up for a pathology test on my blood to verify whether there’s any undetected spread.
Trevan and I both felt peaceful about the plan. I was encouraged that he felt surgery to reverse my ostomy could happen even before I had a clean scan. At least I have that to look forward to. So we left the exam room and headed to the infusion. Less than 2 hours later…
Round 7 was in the books:
Back to myself
As I write this, it’s been a week now since my 7th infusion, and I have felt great! Being off sugar, and on a lower dose of chemo has made a HUGE difference. Nearly all of the lingering side effects have finally disappeared, and even though I didn’t get to have surgery immediately, the ball is rolling.
Then on Thursday June 22nd I got a phone call from my GI surgeon. She said she had seen the scan, talked to my oncologist, and that they both talked to the tumor board Tuesday. She said she wants to go ahead and schedule my ostomy reversal as soon as she can coordinate it with the UroGyn (who will do the prolapse repair at the same time). But she also said — and even the tumor board agreed — that there wasn’t really anything on the scan that they would call a malignancy. Not at the staple line, and not even where the last of the tumor was.
She agreed to look more closely during surgery but feels like it’s so small she probably won’t even be able to see it, let alone cut it out. She said she’s willing if the radiologist can successfully pinpoint it, but he said it was too small and insignificant to do that. “If I find something, I’ll certainly remove it if I can, but I’m not going to go digging.” She added, “I think what we’re seeing on the scan is fake.”
I asked for clarification, “Did you say the spot looked VAGUE, or FAKE?”
She reiterated, “Fake. I really don’t think there’s anything there.”
Hold up. Is it possible, that maybe, just maybe, this experiment has been a success after all? Is is possible that despite my fumbling efforts to qualify for the best possible outcome, we’re to a point where even the surgeon thinks the tumor is no longer there?
Could it be the tumor IS gone?
I don’t know 🤷 It’s unclear. Maybe, it is… maybe it isn’t.
But for what there is to do next, it really doesn’t matter.
Because I’m re-entering normal life and beginning to actively pursue all that I had put on hold. I’m no longer waiting for cancer to be behind me. I’m now setting my house in order and prioritizing my diet. Meanwhile, we wait for the date when my ostomy will be reversed, which I’m told will most likely be in August. Definitely something I’m looking forward to — another big step toward returning to normalcy again.
What a ride.
PS. When I first got my diagnosis someone asked me, “So has this challenge brought you closer to God?” and my response at the time was, “Well, honestly… I’ve felt closer.” In other words, I could remember back to times in my life where I felt very close to Him, but this trial was still very new and I didn’t feel like I had gained a deeper connection to Him through it.
But I do expect to, eventually. Maybe it will just be gradually. The question has haunted me a little ever since as I’ve wondered, have I been letting this challenge bring me closer to Him? Or do I too often let myself feel forgotten, focusing only on what I lack, and envying people around me who enjoy the blessings I wish I had?
Honestly, it depends on the day. I’m just trying to make sure the majority of my days are hopeful, grateful, and optimistic. I certainly don’t escape 100% of the downer kinds, and I don’t think we’re expected to.
So I just try to remember the barges that the brother of Jared built, and trust that I’ll eventually be brought up again after every one of life’s blows, too. The waves were the very things that pushed those barges to the promised land, so I choose to believe that my hard days are not for nothing. I choose to believe that they are moving me, too, to the Lord’s promised blessings.
“For behold, ye shall be as a whale in the midst of the sea; for the mountain waves shall dash upon you. Nevertheless, I will bring you up again out of the depths of the sea; for the winds have gone forth out of my mouth, and also the drains and the floods have I sent forth.” Ether 2:24, emphasis added.
After going through a few storms in the last few weeks, He’s brought me up once again, and I’m grateful.
Thank you everyone for your continued love and support.