I’ve always liked the song "Roller Coaster
" by Bon Jovi, but it wasn't until I was diagnosed with stage four colon cancer that I really understood its relevance.
Life Ain't A Merry Go Round
Monday was a chemotherapy day. My oncologist had mentioned that we would probably start backing off the Oxaliplatin pretty soon (also called FulFox). He even made the statement that after this many treatments he felt bad for prescribing it and that we’d search for alternatives. After my bloodwork, we discovered elevated proteins in my urine and my platelets were low, so they decided to skip the Avastin drip this time.
It turns out that I would have an allergic reaction to the Oxaliplatin in the chair, and the nurses were visibly concerned. I suppose the rash quickly spreading on my body was pretty easy to stare at. They brought the "all hands" team and quickly gave me another Benadryl push and steroid injection. The rash dissipated and I was sent home, but it would still be a full chemo week.
Of course the week was miserable. I took all my preventative meds for the side effects but I was still a little shaken. Why? You see, that was the last major protocol option for me. My CEA score up from the previous four measurements, which means the trend is going in the wrong direction. In summary, here's what my history of treatment looked like: FulFiri: not working; FulFox: allergic reaction and no longer working; Stivarga: more containment than tumor reduction. The only real option I have left is a clinical trial.
Can't Lie and Won't Pretend
That gives us a lot to think about doesn’t it? What are the options?
Will I get into a trial? Will it be effective? Will I be a back and forth patient between locations? How much time is left on the clock?
I may not know the answers to those very real questions but here is what I do know: I believe in God and miracles. My CEA score is still in a very manageable range. Obviously it can spike in a hurry, but we are not there yet. I am mentally and physically strong enough to be a good trial candidate. And clinical trials have already undergone vigorous testing just to make it to human trial, so it isn’t like they are just flipping coins in the lab and saying, “what’s the worst that could happen?".
I will not let treatment complications cloud my mind. I’m not giving up, but I can definitely see how someone who has a relapse might consider not going through it all again. Any setback, especially those during treatment, is a trying experience for any fighter. At the same time, we never know what medical breakthrough is coming next.
Don't Look Back 'Cause It's Not Over
I still think I have work to do here,
so I am not losing faith or hope. Sure I’m scared. Who wouldn’t be? But it’s funny, I’m not scared for me. I finally and fully understand my father’s crying words to me before he underwent bypass surgery 20 years ago: "I’m not crying for me, I’m crying for you! You aren’t ready yet."
Well he was mostly right, but I became ready pretty quickly and I was 26. My own children are 8 and 6-- how ready can they become? Once again, I don’t have all the answers, but I do have hope.
My life is certainly more of a roller coaster
than a merry go ‘round, that’s for sure. But if it didn’t require faith, it wouldn’t mean as much.
How have you managed any treatment setbacks of your own? Share in the comments below.
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