I’ve been meaning to post an update for weeks now. Not that there are any big changes or anything, but random people are always asking me questions. Extended family, acquaintances, even some nurses ask me questions that sometimes require more of an explanation than I feel like giving. I know people care and mean well, and I’m sure my situation makes some people feel like there’s an elephant in the room, so please don’t be offended if you have asked me these things. But I’m about to be real and school ya’ll.
“How are you?” I’m good. I’m over here living the dream, taking chemo like it’s a vitamin. You know, purposefully poisoning myself daily. That’s being facetious, though, because really, I am doing pretty darn good. The only real side effect I’m dealing with is the hand-foot syndrome, but it is mild in comparison to how it has been in the past. I’m thinking the addition of Celebrex as well as maybe some of my supplements are helping with that. Other than that, sometimes I’m tired and I have a few aches and pains for which I go to the chiropractor and practice yoga.
“But really, how ARE you?” Um. I mean, please see above. What do you want me to say? That I’m falling apart at the seams? Because yes, I totally have days that I feel that way, but I do my best to acknowledge those feelings and move on. I have scanxiety and take an Ativan to help me sleep a few days prior to scans. Sometimes things just hit me (like watching The Land Before Time with Alexander) and I end up sobbing ridiculously. But I like to think that I am doing a pretty good job at living in spite of the “cancer bomb that is strapped to my chest (I can’t help but quote AJ here)”.
“When is your last treatment?” Never. My last treatment is never.
“Are you in remission?” Nope. I swallowed chemo this morning. (Ok, so this is almost a compliment. I know it means that I probably don’t look like I have cancer, and maybe I don’t act like I have cancer – but people, if ever I am in remission, or have no evidence of disease, or get to say that my last treatment is next week, we will be freaking celebrating. There will be no. question.)
Here comes the best question, but I have to give you some background first. So I’ve been seeing some specialists and making some phone calls asking about clinical trials. Currently things are good, but I need to have a plan B, C, D….X, Y, Z. Also, I have been a little nervous over the last week or so, because my cancer marker went from 15 to 21 (scan moved up to March 1 just to check things out). Anyway, we were out in Pittsburgh at the end of January, and the doctor (who I liked, actually), said, “Most people with your diagnosis live for less than two years. So why are you still here?”
He actually proceeded to answer his question, so it was rhetorical. HA! I’m going to try to summarize his response in normal human English. So, I have a mutated BRCA-2 gene. This, apparently, although likely to have caused (or at least contributed to) my cancer, also prevents the cancer from repairing its own DNA (to some extent, at least). So, I have been able to “dance” from treatment to treatment and back again, which most people cannot do. Usually when you stop a treatment, it is because the cancer has become resistant to that treatment. Luckily, although I’ve had to change things up, I’ve seen responses when returning to previous treatments. And, having that BRCA mutation gives me the opportunity to qualify for (and maybe respond to) more clinical trials than a colon cancer patient without that mutation.
Is that why I’m still here? I bet that’s part of it. But I also feel like other things are contributing. My wellness. Prayers. A good medical team. My will to raise my kid. Right?
So that’s where things are right now. I guess we will see what that scan shows us – that will answer some questions – and give us some more information to put toward making a good decision. More on those clinical trials later, should we get to that point.