Chapter 2: A Plethora of Pustules and Pimples

As I sat in the exam room at the University of Wisconsin, elated at Dr. Deming's confirmation and recommendation I go back on Erbitux (Cetuximab), my mind immediately when back to that miserable place. In the 5 previous years of treatment before starting Erbitux in November of 2016, side effects had never brought me to tears like this drug.

With all the weekends spent in bed feeling eternally hung over, the throwing up, the hair falling out, the endless trips to the toilet - I just did it. I rolled with it. I took it like a champ. But it never made me emotional. Perhaps because I knew it was all temporary and there was a light at the end of the tunnel. With each round I could resume pretending to be normal within days.

But with Erbitux I never got to the end of the tunnel. Though I woke up every day feeling amazing, the pain and misery of my skin was unending. The cracks in my feet and fingers were not going to heal. No amount of exfoliation was going to make my skin smooth. And my face was never going to be clear, fair, or not hurt. Getting out of bed to walk to the bathroom became a painful chore. Trying not to bump my infected toes into anything became a chore. Putting my compression garment on without my fingers bleeding all over it became a chore. 

Despite feeling great, my quality of life sucked.

On the 4 hour drive back to the Twin Cities from Madison, I prepared myself with one of those "It’s Not That Bad" pep talks, when it really was that bad. It was the only time in 6+ years I’d cried in an oncology office, in front of an oncologist (and nurse, and pharmacist, and volunteer) because I just couldn’t deal with it anymore. And now I was eager to do it again? Eagerness comes easy when you don't have a choice.

As I drove, I tried to rebuild the timeline of my treatment, and associate the severity of the side effects in monthly increments. It wasn't until I'd been on it past 6 months that my skin deteriorated to the point of no return, so I knew I had some manageable time. I would also not be adding in the oral chemo Xeloda (Capecitabine) - which most likely exasperated the horrible condition of my hands and feet given it causes hand and foot syndrome

When an oncologist at Mayo Clinic describes you this way, you own it.
The next day I spoke with my oncologist at the University of Minnesota, who readily agreed to this plan. I think he knows I'm "well read and sophisticated" (according to the oncologist I met with at Mayo) enough to direct what's best for my own care and treatment. He made arrangements for me to start back up on Erbitux. Today I'm taking a few more long looks in the mirror, and admiring the one toe nail that has almost fully grown back in before heading into treatment number 145.

Meanwhile, I looked at Merrick the other day and said, "butt flakes." His eyes grew big, he through his hands in the air, and ran from the scene! Butt flakes is a term he coined for the dry skin that would fall to the toilet set every time I pulled down my pants to sit. No matter how much exfoliating and moisturizing I did, my skin was cracked and dry. Every night when I'd undress, I could see the dry skin fall as my clothes were peeled off. My lack of fingerprints make me an ideal partner in crime, but the amount of DNA I'm about to start shedding will land us both in the slammer.

I remind myself that side effects are a battle we cannot win. All we can do is tend to them.

For more information about managing the side effects of EGFR-inhibitors, download a copy of Fight Colorectal Cancer's newest guide to skin toxicity. There's even a little blurb in there from myself, and the infamous photo I took of my rash-covered face on National Selfie Day in 2016.


Unknown said...

Thank you for sharing your story and the realness of the reality of side effects. I can only say this had inspired me to hold on and yes just roll with it.

Love you and always praying for us both. 🙌💙🙌

katielookingforward said...

Yes, thank you for sharing. Thinking of you.

Anne Marie said...

Thank you also for sharing mindblowing details and info. I am humbled by your strength and perseverance. You are such an amazing and funny person. So much love for you.

Anonymous said...

My only breakdown at the cancer center came after my second treatment with vectibix. As a self conscious person who always hid behind a mountain of hair, I was already traumatized by the thinning and subsequent shortening of what was left of my locks. But Folfox failed me after only 8 months so I had no choice but to move on. I have yet to take a picture of myself or allow anyone else to either. It's unreal how it affects your self esteem. I can't remember what it was like to shower without my skin bleeding. My eyelids are actually scarring from the excessive peeling and I have yet to find a cream that will moisturize my face without burning like I'm on fire. But with the tale my blood work seems to be telling, I believe the old vectibix has stopped working as well. I will know next week when I get my scan results. I am stage IV with extensive liver tumors. I had large ovarian tumors, but a total hysterectomy took care of those. I am 44 and was diagnosed last year. My children are 6, 9, and 18. I just found your blog and have enjoyed reading it tremendously. After every entry I read, I was like, "Yessss, exactly! Someone who gets what it is to be young, with young children, and have something other than breast cancer." Thank you for sharing your story.

Anonymous said...

Hi Sarah, I met your dad at a Bible study just before Thanksgiving this year. I'm from Niagara Falls NY and was down visiting my daughter and son in law, Aaron Knight who live near Portsmouth VA. Your dad talked about your situation and how you turned bad into good. He is very proud of you. I am also a cancer victim and can confirm how devastating is when you hear the words, you have cancer. I was also shocked when I found out the chemo did not work and I would have to go through a 9 hour operation to remove my bladder, prostate and lymph nodes in my abdomen. Can you imagine how it made me feel when they told me I could no longer make love to my wife without a surgical implant and I would have to self catheterize 4 times per day for the rest of my life ??? Well I believed that it would take strong faith and use mind over matter. I no longer catheterize at all and thanks to nerve sparing surgery I can make love to my wife. So for what it's worth, I think you are a beautiful woman who should stay the way you are and keep helping others. If I can help you in any way please let me know and I'm there. One final note, when I was diagnosed I asked if there was anyone I could talk to who had the surgery so I would know what to expect and the hospital said no. Talk about feeling alone and lost. So you know what I did, I started a list with myself as the first person to call if you were going to have this devastating surgery and now the list is up to a dozen people. New surgery candidates no longer have to feel all alone without being armed with the info to feel comfortable about their options. God Bless you and keep up the good work. If you keep an email list, mine is hutchent1@aol.com John Hutchins