My Next Steps

Today my dad and I went back to Duke for a post-surgical checkup and a touch base with the oncologist. My liver surgeon, Dr Clary, re-iterated what I had already read in the pathology results that were posted to my Duke online portal - they got all of the cancer. I shouldn't perform any abdominal exercise for another 3-4 weeks, but there is no concern for me going to Paris in early May, or going to San Fran after that for work. So although we could start chemo on May 1st, my travel plans will delay it until May 23rd.

Then we saw Leigh, my oncologist's nurse practitioner. She's awesome. She greeted us with a big hug and congratulations for doing so well with the surgery. Although Dr Zafar wasn't in the clinic today, she didn't want us to have to come back on Thursday, so she fit us in today. We agreed to start chemo on May 23rd after I return from Paris and San Francisco. She has recommended 4-6 months of chemo, although she said that Dr Zafar could possibly have a different recommended duration (but it's unlikely). I'll be able to debate with him about my length of chemo when I return in May :)

I'll have a CT scan to create a baseline, and then start chemo. Normally we would do the CT the day before chemo so we can have the results before chemo, but since we're coming from Charlotte, we can fit it all into the same day. The results won't change the chemo treatment, so it really doesn't matter that I won't have the results. I will have scans every 2-3 months during treatment, and then every three months for the first two years. Patients that see a recurrence typically see it in the first two years, and with this type of cancer, it would likely reoccur in my liver. After two years, we would scan every six months, because if we continued with scans every 3 months, I could get cancer for all of the radiation. And given my young age, we need to limit my exposure to radiation to allow for exposure throughout my life. I love hearing people tell me I'm young haha!

So I'm special (well, we all knew that didn't we?). It's not typical for someone of my young age to get this type of cancer. This is an important fact for two reasons. First, there's not a lot of data to use as a guideline for treatment. There actually isn't much data in general because this type of treatment wasn't around five or six years ago. And if you are considered "cured" after five years of being cancer-free, you can see how that doesn't leave much data to go on.

Secondly, because I "wasn't supposed to get cancer at this young age", it also means that I might be more likely to get other types of cancer. No one knows why I got cancer, so it logically follows that I might be at higher risk for other types of cancer. That was a hard thing to hear, but I think it was important to hear. I'm not yet in the clear. This is still serious. So although I don't want to do anymore chemo, it's necessary, and probably crucial.

I'm just going to take this treatment by treatment. I might only do 3 more months, or I might do 6 more months. But I'm not gonna let it get in the way of my life. My aunt has been talking about a trip to Santa Fe in September, and I'm going damn it! I'll reschedule the chemo around MY LIFE! I'm not putting my life on hold any longer :)

One last decision that I need to make is related to the actual treatment type. I'll still get the Oxaliplatin via my chest port, but I might switch my other treatment. I was previously taking Xeloda, which is the pill form of 5FU. I would take Xeloda twice a day for two weeks, with one week off. So I was going to Duke every three weeks with either my dad or stepmom driving me. On treatment 3, I got this nasty sunburnt feet side effect. I couldn't walk because my feet seriously felt burnt and eventually peeled. We reduced the dosage for treatment 4, after an additional two week break for the holidays, and although I didn't have the pain, my feet shed an entire layer like a molting snake. It was icky!

The reasons I had originally chosen Xeloda over 5FU was because I thought I would prefer this icky foot side effect to the 5FU side effect of mouth sores. Plus, 5FU is administered via my chest port from a pump over 48 hours. I wear this little pump in a fanny pack and a nurse comes to my home to remove it after 48 hours. And finally, 5FU is administered every two weeks, not three like Xeloda.

But I seem to not tolerate the Xeloda very well. I'm nauseous pretty much the whole two weeks. And although the foot thing seems ok as long as it's just peeling and not burning, my feet are already extremely sensitive. I haven't had any mouth sores with the Oxaliplatin, so I probably won't with the 5FU. But I don't know if I can handle chemo every two weeks. So that's a decision that I need to make, but I've got a few weeks.

So that's it for now!
Love to all,
Sarah