So, what’s next?

On Monday, I had my first CT Scan check-in. Results came back clear, nothing new has grown. My blood clot on my liver has dissolved, and some of the fluid around my initial surgery site had also cleared. I still give myself daily shots to avoid any other clots, but all in all, very good news.

I’ve had a couple people ask me what is coming up next. So, in short, here you go.
-Continue chemo treatments until December 24
-Mid-February I will head to Rochester to have my second surgery
-Late February to early March I will be recovering from that surgery
-Continued frequent observation for recurrence until December 2016
-Continued less-frequent observation until December 2018

Initially, I qualified for a clinical trial which would cut my treatments in half. There is reasonable evidence that just six treatments are as effective as 12. I could have participated in this study, and officially be done with my treatments as of the beginning of October. I elected not to. When I asked my doctor what the benefit of this would be, she responded by saying, “any clinical trial is good for the study of medicine.” This did not satisfy my concern of , ‘what if six isn’t enough?’ so I elected to go on the safer route. So here I am, just five more treatments remaining. If my body continues to weaken and I decide I can’t finish 12, there is some comfort knowing that I might have already endured enough.

After my final treatment, scheduled for December 24, I will continue to be followed up on with tests to make sure nothing has started growing. I left the chart that Mayo provided in Lincoln, but they suggested the most aggressive tracking possible. I think it was something along the lines of blood work every three months, CT scans every six months for three years. Then, blood work every three months and CT scans every year until I hit the magical five-year mark. If nothing has grown in the next five years, I’m considered cured.

Five years. I’ll be 32 on that December 24.

My 30th birthday party will be a blast. I’ll be nearing my 3 years being clear.

My doctor is a little leery of this outline. The three and five year marks are standard, but she’s nervous about the quantity of CT Scans and how that much radiation will affect my body in the long term. For most people with colon cancer, their age doesn’t lend itself to, “What will this mean for me in 40 years?” In my case, it’s a concern. That much radiation may lead to more complications as I get older. Her and I will work to find a outline that we both feel fits me. Too few scans could lead to growth getting out of control, My blood work has rarely been a good indicator of what’s actually going on inside.

After my final round of treatment in December, I will also begin to plan for my second surgery. I have to wait at least one month after my last chemo round for my body to recover. It may be longer, closer to February. I need to make sure my blood levels are back to where they can tolerate surgery and the blood I will loose, as well as my white blood count to fight off any infections. It will also be the dead of winter and the travel to Minnesota might be more troublesome than planned.

I’ve been putting a lot of thought into whether the drive to Rochester, MN is worth it, verse just having the second surgery in Omaha. It is a lot less invasive than the initial surgery, but my parents remind me that it is still more complicated than I assume. Right now, every thing in my is setup the way it will be forever. The second stage is just basically reconnecting my small intestines, putting it back in side, and closing me up. No more Bennie the bag. I think of it as being on the same level as a hernia surgery, which are common. However, there is the undoing of the stitching in my abdomen and reconnecting the intestines, in addition to the routine procedure. As my dad put it, “You should dance with the person who brought you to the dance.” Stay with the same surgeon all the way through, until you are finished.

I think the thing I’m most excited for after I get rid of Bennie, is getting back on a highly health-focused routine. I really liked the foods I was eating up to the surgery. It was mostly raw produce, something Bennie struggles with. I also miss running. It just feels awkward now and makes me uncomfortable. I do yoga/Pilates videos at home in conjunction with resistance bands, but sit out on any part that makes me lay on my stomach. It just feels wrong, and makes me feel like a sick person. I avoid the gym due to germs. I avoid any workout that makes me feel too sweaty, as all I can imagine is the bacteria building behind Bennie’s bandage.

I feel icky. I see the distribution of my weight leaving my muscles and settling in my waist. I fit into a size medium pant a couple weeks ago, which made me mad. I miss my leg muscles. I see my face getting puffier from the steroids I’m on.

I miss being normal. Being free to do such little things like eat nothing but fresh foods and go for a run. I feel helpless in that I have to take these pills when I see what they are doing to me.

I can’t wait until March. Five more months. Hoping for time to continue to fly through December, then it’ll just be a waiting game until February.

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Author: Clarissa A.

The older I get, the less I know.

1 thought on “So, what’s next?”

  1. I think you should have your second surgery wherever the surgeon is better. You don’t want long term complications from it and it’s worth it to drive further if that means a better surgeon.

    So very happy about your good results. I hope it helps to know that what you’re doing is working!

    You may feel yucky and hate your body changes, but to look at you – I would never even suspect that you were the least bit sick. You put some of us cancer survivors to shame 😉 But I know the feeling of missing being able to work out. It’s hard physically and mentally. Just do what you can, when you can. You will be surprised at how quickly your muscles remember once you are able to work out again.

    Find something in each day to enjoy. December will be here soon. And yes – plan big for that 30th bday. Actually – plan big for your next bday! Why wait? You’ve earned this year with blood, sweat, and tears.

    Keep your chin up Claire. So many people routing right along with you.

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