I tried taking notes, Kyle tried taking notes, my dad tried taking notes and the oncologist wrote everything down in doctor scribble and handed it to us in the end. Between all those sources, I think we may be able to spell most of the big words and complex pharmaceutical names that are going to be circling around me for the next 6 months.
I think I'm less concerned about names of drugs and more interested in things happening in the next few weeks that could determine the path I take with chemo.
The basic idea is this, I'll be getting chemo through an IV line every 2 weeks for 6 months. That IV line can either be a PICC line in my arm or a Mediport in my chest. There are pros and cons to each, so my current job is to decide which I want through lots of lots of Googling. Googling is my favorite past time right now!
The PICC line looks more like a traditional IV. The Mediport is surgically implanted in my chest and looks like a giant zit. I'd include a photo, but even I found it a little disturbing. And surgically implanting the Mediport means I'd have to go under and get another little incision, twice. What goes in, must come out! Legos, pennies, food, Mediports!
If you ran into me this summer and I was rocking my biceps in a tank top, which would you rather see, an IV in my forearm or a most unusual bulge coming out of my chest like a third nipple?
The infusion every two weeks is followed by 48 hours of carrying around a pump in a fanny pack. I still have my fanny pack from my post-op pain pump, so maybe I can rock two at the same time. It's been done before, so don't start calling me a trend-setter yet. I will single-handedly bring back the fanny pack and I ask you to join me in this fashion revolution.
The main side effects according to the oncologist will be cold sensitivity (from drinking ice water to opening the fridge) and sores in my mouth. The other side effects as I've read on colon cancer chemo message boards include neuropathy (numbness or tingling) in hands and feet, fatigue and a metallic taste in your mouth. There are drugs to fight the traditional nausea and vomiting (for the most part) and once again, he confirmed that colon cancer chemo drugs leave those hair follicles intact. My hair appointment on Saturday will not be canceled!
In the end, everyone has a different reaction to chemo and I won't know until I get plugged up for the first time.
Now, on to other complications that may alter my drug regiment.
With my first CT scan, it was noted that I had very small nodules in my lungs. Not a big deal according to the surgeon, because chances are that a lot of you also have very small nodules in your lungs. Most often they are nothing. And by small, I mean 2mm. To raise the eyebrows of an oncologist, they need to be a centimeter.
Now that we know the cancer spread to my lymph nodes, we know it potentially went on a road trip and that road trip may have randomly camped out in my lungs. It's a big unknown, so I'm going to have another CT scan in 2 weeks to see if they've grown. If they can detect something that's 2mm large, they will be able to detect even the slightest growth since November.
This left me with that slight, achy pit in my stomach, but I can't let myself get bogged down by unknowns at this point. All the unknowns have been the hardest part of this whole experience. Because it's a giant mystery, the oncologist did not stage my cancer. So I take back everything I said about it being Stage III. I am now labeled with a giant "X" on all the paperwork he handed me.
Since I'm now floating around with the "X" factor, let's add some fun facts about my tumor.
- It was 4cm large. In the world of cancer (and so many other things), size means nothing. We've heard this from several sources. Some of the nastiest little buggers are tiny. 4cm makes it a T3 lesion.
- T3: The cancer has grown through the muscularis propria (muscle layer) and into the outermost layers of the colon but not through them. It has not reached any nearby organs or tissues.
- It was an Adenocarcinoma, which we already knew and 95% of colon cancers are. All this means it is that it was growing in a glandular surface.
- More specifically it was a Moderately Differentiated (Mod Diff) Adenocarcinmo, which defines the structure of the tumor. The good news is that there is something worse than a Mod Diff tumor.
We're still waiting on the genetic test, but regardless of the results, both my boys will be under direct orders to start getting colonoscopies when they are 24 (or 10 years younger than when I was diagnosed). I can't decide when I should bestow this joyful knowledge on them. Perhaps when we meet their girlfriends for the first time or on prom night? I'm not sure, but it will surely break the ice!
The best case scenario right now is that my CT scan in 2 weeks shows the nodules in my lungs have either not changed in size or (because God can do great things) are completely gone. If that's the case, I will have No Evidence of Disease (NED) and can begin Adjunct Chemotherapy. Adjunct is meant to "improve, delay or prevent reoccurrence of cancer."
I will be given Adjunct Chemo with a drug combo called FOLFOX. You can look that up in your own time because my ability to spell even basic words is hard. Asking me to spell medical terminology and pharmaceutical names will give me a Hooked On Phonics nervous breakdown and I might start chucking the alphabet at the wall.
I heard "because you are so young" a lot yesterday. Cancer is not the disease of youth. Looking around the waiting room made that quiet clear. I'm sure I'll be the youngest person in the room on many days. I hope my youth can bring awareness and be a reminder that cancer is not picky.
I feel so great right now and have finally bounced back with a profound sense of renewal. It's easy to appreciate feeling good when you have felt bad for so long. But I can't help but think there may be cancer cells drifting all over my body just looking for another home. I feel strong yet completely vulnerable because this enemy is potentially holding my body hostage.