It’s been a year, since I got the personal phone call from my GI doctor confirming what we already suspected since my colonoscopy three days before… it’s cancer.
As soon as I heard my doctor’s voice over the phone, I knew. He wouldn’t be personally calling to say “the biopsy was negative”. It was just a matter of waiting for him to (very kindly) break the news officially.
Our Initial Plan
My GI was concerned because the tumor in my large intestine was so large that he couldn’t actually finish the colonoscopy. The scope couldn’t get by the tumor. No wonder I was in so much pain.
If this turned into a full blockage, that could be deadly, and require emergency room surgery instead of a careful laproscopic approach from a GI surgeon.
He wanted me to get a CT scan and immediately get surgery. We were going to skip over oncology (that would come later) because the situation with the size of my tumor was so dire. I was told to take Miralax daily and given strict instructions that if I ever go 24 hours without a bowel movement to rush to the emergency room.
Scans and Surgeon Meeting
I had my CT scan the day after I got the “cancer” call, and met with my surgeon the following Monday. Just 1 week after having the colonoscopy/endoscopy procedure that I was sure would reveal a simple celiac diagnosis.
I hadn’t gotten the official report from the CT scan yet, but I had asked them for the disc and handed it over to my surgeon. Before I gave him the disc, we had cheerfully been discussing a quick and relatively simple laproscopic colon surgery with a 2-3 day stay in the hospital and no need for an ostomy bag.
He took the imaging disc to the other room to view it and when he came back in he was no longer jolly. Color had drained from his face as he somberly told me he could not operate on me.
“There are spots all over your liver, these cancer spots will blossom if I operate, you need to see oncology immediately.“
To this point, we hadn’t really realized how quickly everything was moving for the medical system, but looking back, it’s really impressive how fast they pushed me through. As we were checking out at the surgeon’s office, he was on his personal cell phone in the hallway and mouthed to us “I am talking to oncology right now!”.
It felt like ages, but I met my oncologist 4 days later. She confirmed this was stage 4 colon cancer, and that we would need to start treatment ASAP. This meant a port being surgically placed in my chest, because the Folfirnox+Bev chemotherapy she was prescribing is too intense for arm veins.
I asked, how long it would be until my daily pain would go away. And what we were hoping for at the next scan. I was told we were hoping for “significant improvement” and, that it could be weeks or months until my pain was gone. “It takes chemo a long time to work” they said. I found out later, that no one knew at that time if the chemotherapy would have an affect at all.
Treatment Begins
Ten days after I met my oncologist for the first time, I had outpatient surgery (first surgery of my life!) to place the chest port.
The day after port surgery, I started chemotherapy.
I later learned that folfirinox+bev is one of the top two most intense chemo regiments. It consists of 3 separate chemotherapies and an immunotherapy.
I spent 9 hours in the infusion chair the first day, and then came home connected to a chemo pump that continued to administer chemotherapy into me at home for the next 50 hours.
My daughter had her very first cross country meet that afternoon, and I went straight from the infusion center to the meet. I could barely stand or walk, but I was there.
Five days after that first infusion, my daily, debilitating stomach and back pain was almost entirely gone.
Ongoing Treatment
Our initial plan was to get Folfirinox+Bev every other week for 4 rounds and then scan again.
This happened in October and it showed a significant response. I didn’t realize how significant at the time, but every doctor who has looked at it has gasped in shock and confirmed 2-3 times with me that this scan was after just 4 rounds of chemo.
We went from a 3 centimeter tumor in my colon to 2 centimeters, had substantial shrinkage of all the liver mets and affected lymph nodes as well.
8 More Rounds
At this point, my oncologist shared that the typical first line treatment is 12 rounds of the regiment I was on, and then we see where we are. We couldn’t have made this official plan any sooner, because she didn’t know if the chemo would work on me or not.
I started to lose my hair after 3 rounds and after looking like gollum for a few weeks, shaved it in November. I’ve wanted to buzz my hair since I was a kid, andI finally have a reason to do it!
In December, my oncologist gave me a week break for the holidays, I asked her if this would be a problem and she casually said “now that you’re stable, it’s okay”.
I hadn’t known that my position was unstable to start with, but it’s good to be stable, I guess.
In February, after 11 rounds of 50+ hour chemo every other week, I had another scan.
Complete Metabolic Response
This scan showed what is called a “complete metabolic response”.
This means the scans show ZERO active cancer in my body.
A response so rare, there’s not even data on how frequently it is achieved for stage 4 colon cancer patients.
Even more rare for those who haven’t had any surgery to remove cancer from the body.
We cried. We laughed. We stared at the results in shock.
We had known since December that there was no longer circulating tumor DNA in my blood, but that just means the tumors aren’t actively shedding, it doesn’t mean they’re gone/dormant. This was (and is) amazing news.
More Chemo… forever?
After getting that news, I called my best friend, got some ice cream and then, three days later, I went right back on chemotherapy.
This time, not folfirinox+bev, but a maintenance regiment of 5-fu (The 50 hour pump) and Bev (immunotherapy).
These two medications don’t kill active cancer cells like the other two chemos I was on. They actively prevent new cancer cells from forming and re-teach my body to attack cancer cells if they come up.
When I said it was rare for people in my position to have a complete response, it’s even more rare for that response to stick.
Most people who somehow get a Complete Metabolic Response have a recurrence of cancer in their body within a month.
I did not.
I’ve stayed on this 50-hour bi-weekly treatment plan for six months now.
And remain metabolically cancer-free.
What Next
Up next is more chemo. Indefinitely.
There is no way to know if chemo cured me (extremely rare) without going off of chemo and seeing if cancer comes back (HIGHLY discouraged, extremely dangerous).
Or cutting out the affected organs and going “ah, yes, the cancer was gone”.
Also… not great.
So for now, chemo. And more chemo.
As one of my oncologists puts it “we have no data on patients like you, because there are no patients like you”. Which is very kind, and encouraging, but can also be overwhelming at times.
I am extremely involved in making my plan of care, and I have an incredible medical team across three different hospital systems weighing in about every decision.
For now, we all agree, staying on chemo is the right choice.
So my focus is there, and building my body and strength back after the hell it went through for the past year. I may have to fight cancer again, and I want to be the strongest possible if that happens.
When I stopped folfirinox, I could barely walk (hobble) 2 miles, on my strongest day.
I could not stand up from a chair without using my arms to balance and brace and give me extra strength.
I couldn’t balance on one foot for more than 2 seconds and would regularly almost fall over, just trying to get dressed in the morning.
I’ve never been so physically weak and worn out in my life.
So I started working out and running again.
It was brutal.
My Sister in Law is a professional trainer and has been training me for the last five months.
This “building back” my health while actively getting 50 hours of chemo every other week has been one of the hardest things I’ve ever experienced. There’s nothing like re-learning to walk normally and balance on one foot, and stop running into walls due to a lack of balance and spatial awareness.
I’ve worked hard, even when I didn’t want to.
Now I run a 5k in the morning before chemo every other week.
I work do weights, mobility and running workouts starting the day after my chemo pump comes off, and going up until 2 hours before my next treatment.
I never go a day without walking a mile (even with the chemo pump) and most days I get at least 7,000 steps in.
There’s more complicated information about next steps, second (and third!) opinions. And what I plan to do next.
But that’s the SHORT version of the last 12 months of my life.
A medical anomaly.
Thanking God for every new day of life I’m given.