So, Katy, isn't it an amazing feeling to have beaten cancer?
There's no such thing as a bad day once you've had cancer! I'll bet nothing bothers you anymore!
Cancer picked the wrong girl when it picked you!
I hear this kind of stuff all the time, and I understand the general sentiment behind these statements. I usually just smile. It's hard to say, well, there's no such thing as "beating" breast cancer at not quite three years in, because I am still in the camp of folks with a very high chance of recurrence. The whole Stage 1, not in the lymph nodes thing is fairly irrelevant for triple negative breast cancer, which is known to just bypass the lymph system entirely and metastasize anyway. I never feel like I can say that life continues to contain disappointments, both large and small, because no one wants to hear that from a cancer survivor. And I don't think cell biology has much to do with personality or moxie, but I usually keep those thoughts to myself.
It's a strange thing to have had something like TNBC, or probably any form of breast cancer, I suppose. There are some cancers that kill people very quickly, others that are considered curable if they respond to treatment. This is just something that lingers, responds initially, might come back, could always take you by surprise. When people ask me "How ARE you?" or "How is your health?" I still don't know what to say. I mean, look, I'm fine. I'm really healthy. In fact, it's possible that I am healthier than you and everyone else in the room.
But that doesn't mean I don't have cancer--like, RIGHT NOW.
I'm not paranoid, just realistic. The best piece of advice I ever received from another woman with breast cancer has stuck with me for almost three years. Ironically, this advice was passed on to her by our mutual oncologist, who never said anything so enlightening to me:
"You have to live like it's not going to come back."
What a simple statement!
Do you know how hard it is to do that every day? I'm going to tell you something: you don't. You can sympathize, but it's probably quite a stretch for you to empathize.
I have some experience with this. Epilepsy is kind of comparable and kind of not--let me explain. I was diagnosed with a relatively "mild" form of epilepsy at age 6 (I had at least 100 seizures a day, but they were petit mal or absence seizures, much less likely to cause brain damage). I took toxic medication that had long-term side effects and I went through a lot of weird medical procedures. I was "cured" in an extraordinarily painful manner at age 8, only to have epilepsy very publicly return at age 11. I was weaned off of medication at age 17. The side effects remain, the state of Illinois still won't let me easily get a driver's license, and I worry about it, in the back of my mind, on various occasions. I worried about it with each pregnancy and when I went on birth control pills. It is a lingering thought in my mind when I am swimming or driving and I hope I don't die or kill someone else by having a seizure. If my kids stare off into space, I wonder "what have I done?" since no one really understands the genetic links of neurological conditions like epilepsy, and then I tell them to eat their vegetables.
But epilepsy isn't CANCER, you say. Well, epilepsy kills more people in the U.S. each year than does breast cancer. It's no joke.
So I was somewhat more prepared than the average breast cancer patient for what this new normal would be like, but it's still something else. I see my oncologist every six months at this point and have my annual mammogram coming up in a month. I am already nervous about that. And no, you don't know exactly what I mean when I say NERVOUS. You say "I can imagine" and that's it--your concept of that kind of nervousness exists solely in your imagination, and I know this, because I was you not so long ago. I don't have any other regular medical procedures: I don't get scans, blood draws, or have tumor markers checked. That has never been the standard of care in my doctor's practice, and recent recommendations agree with that protocol. I am not on tamoxifen or any other maintenance medication. I went through all of that shit in 2010, and then they said: "OK, good luck. We've done what we could do," or something to that effect, and I was sent home to live my life like nothing had ever happened.
And most of the time, I go to work and deal with my family and try to see my friends and shop online and eat too many carbs like everyone else. I work out a lot, but hell, I would probably do that anyway. I have a healthy lifestyle but I am not overly obsessed. I eat some jelly beans if I feel like it or have a nightcap and I don't feel guilty. I don't have panic attacks. The point is that I try to live like it's not going to come back.
But then sometimes, if you're paying attention, you might notice something. I might rub my chest right in front of you, when we're out in public. I might start pounding on my breastbone like a gorilla, only absently, while I'm talking to you about something else. I might inappropriately yank my shirt down and stare at the top of my breasts. I might do these things even if you are a man, or my coworker, or the barista. I am not thinking about you at all when these things happen, but if you are paying attention, you might notice.
I do this sometimes because I still have chronic pain in my pec muscle, or what I assume to be my pec muscle, because in general it hurts when I press down on my left breast/pec/breastbone. It gets worse with some kinds of exercise but is pretty much always there. I know it is probably a radiation injury, but I also know that it could--VERY REALISTICALLY--be mets to the sternum or chest wall. I know that the slightly raised colorless spot in my cleavage is probably one of those innocuous "dermal calcifications" that almost all women have, but I also know that it could be cancer presenting in my skin. And, I know that metastatic breast cancer is incurable, and that there are very few treatments for metastatic TNBC in particular.
Most of the time, I do those things, and then go back to my other business as if nothing had happened. Sometimes, these fears and concerns follow me, as they did last night. I had a dream, a very realistic cancer dream. I thought I should get my chest issue checked out. Somehow, I was able to give some kind of "sample" to Gabe (which of course makes no sense) and I made him take it to the hospital. He got the results, which was that cancer had spread throughout my left breast and chest area, and he cried inconsolably when he gave me the news. And in my dream, I felt vaguely nauseous, kind of like I couldn't breathe, but I just nodded and said "OK," and then I woke up.
Which is exactly, and I mean EXACTLY, the reaction I had to my original diagnosis, except that I didn't wake up, because it wasn't a bad dream--it was real.
Perhaps I had this dream because I'm NERVOUS (it's not like public speaking, folks) about that upcoming mammogram. Or, this is just something I will deal with for a while when physical issues like these arise. But there it is, all the time, just there in the background, like the memory you have of me when I had long hair or that time I made you laugh so hard you choked on your dinner. Though it would make you sad to learn of my cancer spreading, it would be me with a life cut short. I am in awe of all the people I know who live with that knowledge of their lives every day, who do not live in FEAR of it but in the TRUTH of it.
Dreams are telling things. I am not one of those people who has crazy dreams. I have been known to dream about what I will have for breakfast, and then wake up and...make that very thing for breakfast. It is as if my subcounsious mind decided at some point to come to terms with my conscious mind. But even these dreams that are so real tell us something. I wish I could rely on someone else to literally carry this burden to the lab, but I can't. I am the one who has to pay attention to my body, and make decisions about what issues need follow-up care, and I have to physically do the tests and wait in the doctor's office and pick up the phone. It's me who has the dream, wakes up with a start to find myself alone in bed because Gabe had gone to take care of Augie who had woken up in the middle of the night, feel my chest again, and go back to sleep. It's me who will wake up at dawn to exercise just like I always do, and then I will help get the kids breakfast and get ready for school and I will go to work. It's me, and others like me, who must live like it will never come back, knowing all the while that it might. So next time you're wondering what to say to one of us, ignore the conventional wisdom and say something like this:
Your seeming normalcy is nothing short of amazing!
I know no one will ever say this to me or to any other cancer survivor. But a girl can dream, can't she?