The Cancer Limbo

I’m recovering really well from the double mastectomy. I’ve been up and about, working, driving, seeing friends, doing errands. I’m even doing a scene reading at my theater next week (which terrifies me shitless, but that’s a whole other blog post). And I’m actually getting used to being flat-chested and to my strange looking and feeling “frankenboobs” (thanks to a new cancer friend for that perfect term). I’m also continuing to rebuild from chemo; my hair is starting to grow back all over my body, with extra credit new peach fuzz deciding to grow all over my face. The happiness of shaving my legs and putting my hair in a ponytail is indescribable! I have more energy, a clearer brain, I’ve gained a little weight back, and I have been walking out in the world holding my head up again.

Yet, I’m in this weird, uncomfortable, in between state. A place of limbo, both with my life and my health. Quite honestly, I don’t know what to do with myself. Normally, yoga is the thing that helps me come back to balance and center, and allows me to shake off the anxiety, depression, uncertainty, and confusion that underlies my usually positive and empowered attitude. But I’m not allowed to do yoga again for who knows how long. Because once I heal from the mastectomy (during which time use of arm and chest muscles really isn’t possible, and is a no-no), I then have another surgery in around two months or so in which the expanders placed under my muscle that are filled every few weeks with saline until the correct breast size is achieved are replaced with permanent implants. The recovery from that is easier, but it still puts me out of commission from doing any down dogs, planks, and so on, for a while. I’m allowed to walk, so I’m walking as much as I can, hoping it will burn off the angst inside of me, but so far, no luck.

You see, I hate to disappoint everyone who was sure I would kick cancer’s ass, and who told me that I did… but the truth is, I didn’t. Even though the tumor wasn’t able to be seen on the ultrasound, I knew I ran the risk that microscopic cancer cells could still be alive there. And as I found out a few days after my surgery, there were.

This is how the news-breaking conversation went, in my mind (not in reality, obviously): “Hi, so we’ve spent the last five months poisoning you, and we just chopped off your boobs, but all for nothing, because there are still cancer cells, so SURPRISE! You don’t actually get to move forward with your life again yet. Once you heal from the surgery, you’re going to be knocked right back down again… and when you’ve recovered from that, you’ll be knocked down again, and again.” On a side note, the good news is that there was no cancer found in lymph nodes, and the margins of the tumor were clear. But the fact that there were still live cancer cells puts me in a heart-wrenching position of what to do next.

I was sure I would have what is called a complete pathological response to the chemo, meaning no residual live cancer cells are found when the tissue from the mastectomy is biopsied. I was sure I would have this because everyone I had talked to who had gone through this did, and because, you know, positive thinking and such. But I didn’t. So I spent a few days being very jealous (and angry) of those with their full responses for waving their “Well, I had a pathological complete response” flags, while what they were really saying to me was, “I’m better than you.” (Of course, this isn’t the actual truth, but it’s what I felt). What is wrong with me that I didn’t have a complete response!?

Turns out only around 1/3 of those with triple negative breast cancer do have the full response, but again, why wasn’t I one of them? The reality is that doesn’t matter. The reality is I have to deal with the fact that I wasn’t one of them. The reality is I have to accept the fact that while I thought this journey would be over after my permanent implant surgery and I could finally start healing and moving forward with my life, it may not be. Throw my BRCA1 positive status on top of the aggressive triple negative monster, and the truth is that even though all the cancer cells are supposed to have been taken out with the mastectomy, labeling me NED, no evidence of disease, the mastectomy cannot possibly remove 100% of the tissue, and there may be as little as one cancer cell hiding out in the breast region still. But, there also may not be…. Which is why I don’t know what to do.

Radiation is what is being recommended, to kill any cells that might still be there. The radiation oncologist told me doing the radiation would decrease my chance of local recurrence by 15–20%. But, the double mastectomy was supposed to have decreased my risk of recurrence by 98%…. so…..I’m confused. Does that mean it reduces my 2% risk by 15–20%? I have had so many percentages hurled at me since October that seeing or hearing a percentage sign makes me want to throw things. Any things.

Before I even met with the radiologist, I felt intuitively very strongly that I shouldn’t do radiation. If my nodes were positive and my margins weren’t clear, it would have been a different story, and I know I would need to. But in the situation I am in, the side effects, to me, are too extreme and would lower my long-term quality of life too much. And I had also done research and spoken with triple negative breast cancer survivors who, like me, did not have complete pathological response after chemo but who did not do radiation and have been free and healthy for years.

I went to my appointment with the radiologist open to hear what she had to say though. I mean, if my percentage (ARGH that nasty word again) risk of recurrence was extremely high without radiation, I would probably decide it was needed. But at 15–20%, I wasn’t sold. Even the radiologist herself said it was a “soft sell” for me to do radiation rather than a “hard sell.” So I asked if we could do imaging to see if there actually were any cells left, because if there were, then obviously, the best decision would be to do it. However, I learned that there is currently no way of actually testing to see if there are; shockingly, in this day and age, imaging apparently doesn’t show cancer cells at the microscopic level. So now it’s up to me to decide.

Radiation would be daily for 6 weeks. And if I were to do it, I would have to put off my implant surgery for at least six months after my last radiation. And I’m pretty much guaranteed that once the implants were put in, the breast that was radiated would be higher than the other one, and would look deformed and weird, and that the nipple (which is just for show now, after the mastectomy, and has no feeling), would most likely fall off. I know many may see this as vanity versus life, but if the radiation is not really needed, because there are no cells, then my quality of life for my whole life would be lessened for nothing. And I would also run the risk of secondary cancers caused by radiation, possible lung problems, burnt skin, long term fatigue, and so on. There’s also the fact that usually radiation is only allowed to be done once in a person’s life.

In addition to recommending radiation, my oncologist mentioned looking into a clinical trial for me. I’m seeing her in a few weeks to discuss. I’ve been doing research, and some trials seem very promising and have had much success, especially in those with BRCA and triple negative. I feel more intuitively drawn to those than to radiation. And my thinking is that if there were cells left that radiation would get, couldn’t these trial drugs kill them? I need more info on this, but it’s still probably one of the scariest and biggest decisions I will ever make in my life… a life or death decision, really. God do I miss the days when my most stressful decision was whether or not to, gasp, text a guy I liked back to soon, or, the horror, first!

If I decide not to do the radiation, which is where I am leaning, then if I were to, God forbid, get a recurrence in that area, how mad would I be at myself!? I would blame myself forever. But on the other hand, how do I ignore my screaming intuition? With chemo, while of course I didn’t want to do it, my intuition was clear that I had to. It screamed at me to. As it screamed at me to get the double mastectomy, something else I didn’t want to do, but knew I had to. But my intuition is screaming at me not to do radiation.

So, I’m in limbo. I don’t know yet what to do next. I’m in the place between being sick and being healthy. The place in which I’m stuck and unable to move on to the next phase of my life. Hopefully, I’ll be able to go under that limbo stick and come out the other side soon. I’m pretty sure I will.