As I sit here under my red gazebo, looking out at the pastoral view on our farm site, I am shocked to realize that I haven’t written a blog post since October of 2022. That is almost an entire year ago! So much has happened since my last post that I am having a hard time even knowing where or how to begin. I haven’t written because the ‘happenings’ have not been fun, exciting, nor even travel related. It has definitely been an adventure though!
As you read on if you start to get overwhelmed by the details or topic in general, I get it. But if you do read all the way to the end, you will see that the story does not end as expected. That said, this is a wordy post (nothing new for me), as this blog serves as my (our) memory bank more than anything else. Especially since my personal built-in memory bank is, um… a bit lacking. All this to say, if this is just too much – feel totally free to skip ahead to the paragraph that starts with “SO NOW I AM…” to avoid the gritty details and get right to the good stuff.
My (Pamela) personal motto for years and years has been simply “Jesus Loves Me” and I mean that with all sincerity. I know he loves you too and every single one of us on this entire planet – but for me it’s very personal. I KNOW that he really, completely and personally loves me, little ole me. Just the way I am, warts and weaknesses and faults and all. Simply put, it is that knowledge that keeps me going when nothing makes sense. He is the calm in my storm, the anchor when in rough seas, and the answer to every single one of life’s problems. And as we all know, life, especially in these crazy days, is chock full of problems!
Speaking of problems, even as I wrote my last post almost a year ago, I knew that everything was about to change for us and to be completely honest, I was fighting it tooth and nail. I wanted to remain in denial for as long as possible and just enjoy our traveling lifestyle; especially now that we were finally back in my beloved “out west”. I also had the strong desire to not focus on any potential health issues, but rather I forced myself to focus all of my time and limited energy on our granddaughter Saylor, who had been living and traveling with us since early August and who I was homeschooling. We had agreed to have her with us and homeschool her for her entire 6th grade school year, so we fully expected to have her stay with us until May/June of 2023. All the while though, I knew deep down that I was not being realistic. I knew that everything was about to change. I just didn’t want it to… at all.
You see, I had been having some blood in my stool for some time coupled with other ongoing digestive issues and more fatigue than usual. I knew that something was clearly wrong. My dad had died of colon cancer when he was only 62, but I kept convincing myself that it wasn’t that. It simply couldn’t be that. I was much too young (only 56 at the time) and much too healthy. I had not taken any prescription medications for 15 years and I am a bit of a health nut when it comes to my diet to control my multiple sclerosis and my tendency to gain weight. I have been low carb for many years (cancer feeds on sugar) and for the past three years I had been eating a very strict keto diet while Intermittent Fasting (My eating window was a strict 2pm-6pm) and my food has been clean and healthy for years. And of course, I have had celiac disease and thus been strictly gluten free since the spring of 2006. “Surely it’s not colon cancer. No need to even worry about it.” I told myself.
We had decided to hang out in Arizona through the holiday season of 2022 and then meander over to California and then north to Oregon and possibly even further north to show Saylor the state of Washington after Christmas. Arizona is my absolute favorite state in the entire country and since we had Saylor staying with us, we were hoping that staying in one area for three months would give her some stability and allow me to involve her in some local homeschool and church activities. I had made all our reservations to bounce around that area and we used our 4th week to be in my favorite Verde Valley Campground in Cottonwood for Christmas and then to spend New Year’s in Palm Springs, California. They were great plans… exciting plans.
Knowing deep down that it was only prudent that I at least get a colonoscopy, I contacted doctors within a one-hundred mile radius of where we were hanging out in Cottonwood, Arizona. Most gastroenterologists were not accepting any new patients. Those that were accepting patients were all incredibly backlogged and I was repeatedly told that the soonest appointment I could get even for an initial appointment was 6-7 months and they wouldn’t let me schedule a colonoscopy without an initial appointment. I was frustrated to say the least and clueless as to what I should do. After much prayer, God led me to a company called Pinnacle BioLabs that offered a FIT colon cancer screening test that I could order and test my stool from home, without a doctor. I had no idea that such a thing existed! It is actually “used by doctors and hospitals nationwide” and their website states that the “Second Generation FIT® is amazingly accurate, detecting globlin levels at 50 ng/mL (50 billionths of a gram). The American College of Gastroenterology recommends a FIT test once per year, and recognizes the Fecal Immunochemical Test as the number one alternative to colonoscopy.³ In fact, in a recent study of over 26,000 patients, FIT caught more colon cancers than colonoscopy did.” It was very affordable and mine ended up being 100% accurate and which is why our plans had to change and fast. I HIGHLY recommend it to anyone who is due or past due for a colonoscopy, or has any digestive issues as I did.
I took the FIT test on 11/6/2022 and it came back positive. I finally broke down and told Greg. Looking back now, I know it was a bad decision on my part, but I hadn’t even told him about the blood in my stool as I didn’t want him to freak out and worry about me and he doesn’t do well with unknowns, especially when it comes to me and medical issues. He’s especially sensitive to my health considering all that he’s already been through with my previous and ongoing health issues including my multiple sclerosis. Also, I did not want to stop travelling nor did I want to deal with the possibility of having cancer and all that would entail when we had Saylor with us, for her sake. As I said, in retrospect it was not one of the smartest decisions I ever made, but up until this point I had decided to keep it to myself. I had convinced myself that the bleeding was due to my diverticulosis, or my IBS, or my MS, or even my having celiac. Certainly, I told myself, it can’t be cancer. The FIT test changed my mindset immediately. I called every one of the local gastroenterologists back once again and told them about the FIT test, and even with those results they were “sorry” but couldn’t get me in any sooner. Yet they all insisted I find someone and be seen soon. Seriously?!?!
Greg immediately wanted to drive back east to be closer to our grown kids and grandkids and to see if I could get better medical care. I already knew that was going to be our inevitable next move, so I had been researching campsites in and around Greenville but to no avail. Our closest Thousand Trails membership park was just over an hour away from Greenville in Fair Play, South Carolina, and it is one of the worst parks in the entire Thousand Trails system, at least in my humble opinion. We figured that we would have to bounce back and forth between staying our maximum of three weeks at a time at that crappy TT park and then stay one week at a Corp of Engineers Park and then return to the crappy TT park if we couldn’t find a decent RV site for longer term. There were simply no decent long term RV sites available anywhere that I could find. First thing in the morning of 11/7 I had done a bunch of searches again for sites and found nothing. After much discussion with Greg, he was insistent that we head back to South Carolina sooner rather than later, he got busy planning our return route while I got back onto the computer to look some more for a site. A brand new listing had popped up on Craigslist. A month-to-month site on a farm that was located only about an hour and fifteen minutes west of Greenville. The pictures were beautiful. It looked too good to be true. I called the listing immediately and she said she had literally just posted it. I explained how interested we were in the site and asked her to hold on to it for me and that I’d call her back after I spoke with my husband. Greg and I were both amazed and we knew immediately that it was a gift straight from God. I called her back and paid the deposit and secured the site immediately – sight unseen! (Pardon the pun.)
When we approached Saylor (thinking she would continue to live with us after we got back to SC) she said she really wanted to go back home. She was really missing her mom, siblings, and her friends. Furthermore, she’d love to be back home by her 12th birthday 12/3. We got the site to begin on 12/1 so now we had to book it across the entire country in record time (for us anyway).
The following week I happened upon Colonoscopy Assist which is a program to be able to obtain a colonoscopy at a reduced rate. We do not have any health insurance, only the lowest level Christian Healthcare Ministries sharing ministry plan, so I was looking for a more affordable way to get a colonoscopy done. It “just so happened” that there was a gastroenterologist in the Colonoscopy Assist program located in Clemson, South Carolina, which was only about 30 minutes from the site that we had just procured. I called them and explained my situation and they were wonderful. They immediately booked me a consultation appointment for 12/7 with the assurance that they’d be able to get me in for a colonoscopy within days after that.
We made the cross-country trip in record time and Saylor got to see New Mexico for the first time ever, which she loved. We were also able to stop and spend some time with my half-sister and her family on the way as well. It was a whirlwind trip back east, but we made the most of it.
We made it to our farm site on 12/1 and not only were the pictures accurate, but also the site itself was bigger, better and prettier than we could have imagined. There were even two Haflinger horses in the pasture just waiting there to greet us when we arrived. After we pulled up and Greg got our home all situated on the site; I went inside, extended the slides, looked out our windows at the breathtaking view… and bawled my eyes out. I was so thankful and amazed by God’s providing this site for us. To tell you the truth I still am. But God!
I drove Saylor home on 12/2 (1 day before her birthday!) and she was happy as well. We hadn’t told her anything about potential cancer at this point, only that I was having some health issues and needed to go to a doctor and needed to schedule some overdue exams.
My consultation was 12/7 and the gastroenterologist immediately scheduled my colonoscopy for 12/13. Greg came with me for the colonoscopy and when I was in the recovery area the doctor came in and gave us the news together. In addition to some other things, I had a very large and very low tumor that he biopsied, but he said he was already sure that it was cancer. He said that the size, location, and scope of my cancer was beyond his area of expertise, so he immediately referred me to a surgeon in Greenville who was more experienced and specialized in tumors like mine.
Thus began our brand-new journey – one that we never signed up for. To make a very long story short, which I am obviously not capable of, after CT scans and MRIs and more tests, I was diagnosed with stage 3b colorectal cancer (which means lymph nodes were also involved). From the beginning I was adamantly against chemotherapy, but after all the test results were in, I was told that my tumor was too large and too low in my colon to even do surgery without my ending up with a permanent colostomy bag and even at that they most likely would not be able to get it all. They wanted me to do high-dose radiation and chemotherapy first or I was not likely to last a year simply due to the size and location of my tumor. At first I was adamantly again chemotherapy especially. As I said above, I had not taken any prescription medications in 15 years at this point, and I certainly didn’t relish poisoning my body that I had worked so hard for so long to get as healthy as I possibly could. That said, I had been eating healthy and juicing and making green smoothies, etc. for months already as I had stepped up my game even before the diagnosis yet to no avail. After further testing in February the tumor had grown even more just since my initial tests in December. After much prayer I decided to proceed with the radiation and chemotherapy as they wanted, to be followed by surgery after it had shrunk my tumor down to a manageable size.
I started in February with the high-dose radiation first, followed by what was supposed to have been 16 weeks of chemo and then the plan was to have surgery to remove that entire section of my colon and my local lymph nodes afterwards. To say that the treatment was awful is the biggest understatement ever. The protocol that I was on is called Folfox which consisted of a cocktail of two chemotherapy drugs and a third drug as well. Oxaliplatin (which I later found out is one of the two most neurotoxic chemo drugs in use today), and it’s “helper” drug “Folinic acid to be administered via infusion through my port (which I had surgically implanted in February). These were administered first at the Seneca Cancer Center over the course of a few hours. They were followed by the second chemo drug: Fluorouracil which was administered also via my port utilizing a 48 hour pump which I then went home with for constant chemo to be pumped into my system until I returned two days later to get it removed. I was initially told that this would be “no big deal” like “chemotherapy lite” by my first surgeon. (Who apparently knows nothing about the actual chemotherapy itself – only the surgery aspect and who gave me so much misinformation that I since switched to another surgeon!) He knew that I was against chemotherapy so the only thing I can surmise is that he was trying to talk me into it any way he could. I lost all trust in him in the process as let’s just say he couldn’t have been more wrong!
My oncologist told me that my body was overly sensitive to the chemo and without going into details, it was an awful experience and the worst time in my life for me in more ways than anyone will ever know. I never actually felt like I was going to die from the cancer itself, but I most definitely felt like I was on the verge of death from the chemo on more than one occasion! It was not only wreaking havoc on my health, but also in all areas of our lives. Fortunately, shortly after starting my chemotherapy in early March, our 27-year-old son, J.Jay came to stay with us to be a support and help for me. He ended up staying with us for just over 3 months and that was a MAJOR blessing for me. Thank you, J.Jay! I honestly don’t know how I would have gotten through everything without him there!
After 10 weeks of the chemo and me going further downhill with each cycle, I came home after getting my 48-hour chemo pump disconnected knowing that I had 6 more weeks to go and doubting I would make it through, when I clearly and audibly heard a voice. God told me, “That’s enough. It’s done what it needs to do, any more will kill you.” I was quite shocked as I was determined to get through at least 12 weeks minimally, but God had made it clear. I called Greg (who was out of town) and told him what God told me and he didn’t question it for a second.
That same day of my pump disconnect, they had done more bloodwork as they always do. This time though they also took blood for an updated CA-125 cancer marker test, which they didn’t typically do every time. Mine had been elevated since it was first taken in December of 2022. I never get those results for a day or two after the test was taken. The next day, after I told Greg and my close friends and family of God’s voice and my decision to stop the chemotherapy my results came in: for the first time since being diagnosed my CA-125 had dropped into the normal range!
I told my oncologist that I was done with the chemo, and I insisted on an MRI to see if cancer shrunk and how much – which they normally won’t do until end of the therapy. She wasn’t happy with me but knew my mind was made up, so she scheduled it. Two weeks later I had the MRI and the results showed NO EVIDENCE OF METATASTIC DISEASE! Which means – the cancer is gone! They then scheduled me for a sigmoidoscopy with the surgeon and she (new surgeon) also couldn’t find any evidence of cancer.
The surgeon wanted me to get a Signatera DNA test and workup, which is a “highly sensitive and personalized molecular residual disease assay (MRD) using circulating tumor DNA (ctDNA), custom designed for each patient to help identify relapse earlier than standard of care tools.” And it took a while to get those results but they also came back NEGATIVE. Which means no circulating tumor cells in by blood. YAY!!! It is nothing short of an absolute miracle.
My surgeon and both of my oncologists are in disbelief that I am truly cancer free. I have to be tested “every 3 months” starting with another MRI, a sigmoidoscopy with biopsy, another Signatera tests AND more bloodwork – all in the month of October. Maybe after all those results also come back with no signs of cancer they will finally believe in miracles!!!
SO NOW I AM officially in remission aka “No evidence of disease”. I’d like to say cancer free, but the doctors won’t go that far. I looked up the difference in those terms and found it quite interesting. I am now trying to get my body and my immune system back into a healthy state, which is much harder and taking much longer than I ever imagined. I still deal with neuropathy, fatigue, and my bloodwork is still out of normal ranges in several areas. But I am walking 2+ miles daily on my outdoor walk, in addition to my normal daily activity to get that chemo through and out of my system. I am still trying to figure out my ideal diet to manage both the cancer not returning and my multiple sclerosis, which is still a work in progress as well as some other health issues that have arisen from all that I’ve been through – but I am determined to return to being as close to healthy as I possibly can.
If the cancer does return, which I honestly don’t think that it will, I will let them do surgery but that’s it. I am 99.9% certain that I am never doing chemotherapy again! I won’t say 100% because I have learned the hard way over the years to never say never. I make my plans, but God directs my steps. That said, I simply cannot imagine a scenario where I would do chemotherapy again. It’s too toxic for me and frankly, I’d rather go to heaven then to go through that hell again! As soon as I get all my October tests results confirming still no cancer, I am going to insist they schedule my surgery to take this port out!
Where do we go from here? We really have no clue. Only God knows, literally. This ‘every three months’ thing is a bit restrictive, and all the events of this year has affected every area of our lives in more ways that I can even get into. Since everything has changed so much, we are both up in the air now trying to figure out our next phase of life. We usually make our plans and then let God lead our daily path. Right now, we are enjoying being close to our kids and grandkids while waiting on his directions to even make our plans. But God!
Stay tuned to see what the future holds. Meanwhile, we’ll see you here, there, or in the air!
Happy Trails and Sunny Sails