What it’s like to be a recent breast cancer survivor (hint: it’s a total shit show)

I’m now just about three months out from my last chemo, and almost two from my double mastectomy. I have another surgery in mid July, for reconstructive purposes, which will hopefully be the last for a while, where they replace the tissue expanders with permanent implants. And because I decided not to do radiation, and am not hormone receptor or HER2 positive, I am now done with treatment. Oh, and I am considered “no evidence of disease,” or NED.

Being in this place is harder than I thought it would be. I am learning that life after treatment can be harder than life during. When you’re going through chemo, and then a double mastectomy, all that matters is getting through it. Each day, your job is just to survive. There’s really nothing else for you to do, or think about. However, when you’re done, you’re not only dealing with the physical side effects which linger on for a long time, including: fatigue, no energy, chemo brain, neuropathy, surprise new facial hair, constant painful cramps while your lady parts try to figure themselves out, chemically and hormonally induced depression and mood swings… but also with all of the emotions that come with trying to pick up the pieces and live a “normal” life again. But here’s the thing; my life is never going to be “normal” again. My body, my beliefs, and the life I was planning on having were rocked to the core. So, while it appears to the outside world that I’m ok, because I look ok again, I’m really not always so ok.

And thanks to a recent experience that sort of lumps all of the issues I’m dealing with together (which the writer in me was thrilled about!) I’m able to concisely explain what’s going on.

A few weeks ago, I brought my certified emotional support dog, Jedi, to therapy with me. My therapist told me she had notified the administration that an emotional support dog would be there that day, and had just asked that I bring Jedi’s certifying papers with me. I had Jedi in her official emotional support dog vest, and when we got off the elevator, two of the receptionists were oohing and ahhhing over my cute little puppy, but there was one woman, looming over them. Clearly she had not fallen prey to my puppy’s cuteness. Instead of a smile, there was a scowl. She asked curtly if I had papers to prove my dog was an actual support dog. Oooooh nooooo DAMNIT! I yelled to myself. My fucking chemo brain. I had forgotten the papers.

I told her I was so sorry, that I had forgotten them, and apologized, but that I had cleared it with my therapist, and that I had Jedi in her official vest. She pushed back three more times, each more harshly than the other, raising her voice, admonishing me for not bringing the papers, saying she didn’t believe the dog was actually certified. I had nothing else to say but sorry, and I wasn’t able to stand up for myself. I was crumbling and having a hard time handling her being angry with me.

Finally, the tears welling up, I said, “Look, I really am sorry, I just forgot. I have chemo brain.” To which she shut up, looked me up and down, and shook her head. When I finally walked into my therapist’s office, I was already a ball of hysterical tears, a shell of the strong, calm, confident, centered woman I was so sure I would be after going through, and surviving, cancer. But, nope. I am not strong, confidant, or secure. I have become a needy, insecure, indecisive, overly sensitive, depressed, anxious version of a woman I once knew. And this encounter represents a big chunk of what I’m dealing with right now.

First, let’s talk about the chemo brain. Luckily, I have no problem with long-term memory, but I blank on trying to find the right word sometimes, I forget recent conversations, I forget where I put things, and I forget to do things. I often forget where I park, once having to walk home from the mall after spending an hour unsuccessfully searching for my car, so that my boyfriend could drive me back later and help me find it. Oh! And one time, I put the laundry in the dryer, and when I went to get it out 45 minutes later was surprised to find it all still wet. Why? Because I had put the money in the wrong machine. That was fun. I mess up words, sometimes calling the window a fridge, a shower a yoga mat, and asking for a cup of tuna, instead of coffee, just for example (true stories). I haven’t even tried to get back on stage again yet, the thing I love most, because I’m terrified I wont be able to memorize any lines. And I’m finding it really hard to see my friends on stage right now because it makes me depressed that I’m not capable of being up there, and so, I feel like a horrible friend for not wanting to see their shows.

Next, this encounter epitomized my inability to currently stand up for myself, because I’m not able to handle people being upset with me. I just crumble. It’s very strange. I am very insecure at the moment. I am constantly worried that a friend of mine doesn’t like me anymore, that I did something to them I am not aware of, or is just sick of me and my cancer, because I haven’t heard from them for a while, or because they didn’t call, answer, or return my call, or because they promised to bring me dinner, or come visit, but never did. Right now, I am so worried what everyone thinks of me, and it sucks. Thanks, stupid cancer.

Perhaps this insecurity has to do with the fact that I don’t really know who I am anymore. I don’t know how to “be” in the world now, because I’m not the same person I was. I have been in a cancer cocoon, and am pretty sure it is a moth that has emerged, rather than a butterfly. After being so insular for months, my only job surviving chemo and surgery, I have become very socially awkward and introverted, which, for those who know me, is crazy. Because I have always loved being social, meeting people, getting to know people, laughing, making jokes… but I don’t know how to do that right now. I don’t really know what to say to people, especially new people, and if I actually do say something, I then second guess it and beat myself up for saying something stupid. I’m uncomfortable around big groups, especially groups in which I don’t know people. I also feel incredibly boring, like I don’t have anything to add or say, and like I must be a total bummer, which is another reason I’m not necessarily reaching out to friends. I’m not fun anymore. I used to be so fun. And I’m worried people are sick of me and my cancer and don’t want to deal.

Finally, when I told the woman at the office I had chemo brain, the look on her face relayed to me that she didn’t believe I had gone through chemo, so I couldn’t possibly have chemo brain. The issue of not looking like someone who has just survived cancer makes me feel guilty. With the help of my incredibly generous friends and family, I was able to use cold caps during chemo and keep a good amount of hair. I am very lucky. If I had not done the cold caps, then this many months out of chemo, I would still have very little hair, and people would know what I had just gone through. But I have hair. And I do look healthy, thanks, I think, to exercise and healthy living before going through all of this, and now, after. Not one person would know the ordeal I just went through, because of how I look. And I have serious guilt issues. I feel terrible that so many others in my shoes are still dealing with the emotional impact of the loss and change of appearance that comes with chemo. I almost feel embarrassed to say that I just survived breast cancer, because I don’t look it.

And because I do look pretty much the same as I did before (apart from the saline filled balloon expander thingys hidden under my shirt that feel as heavy, hard, and immobile as cement, which I like to call frankenboobs), I hear many people say, “Hooray! Holly’s back and she’s fine again!” But I’m not back, because I’m not that Holly anymore. I’m a new Holly. But I don’t know who she is yet. And so, I’m not fine.

I can’t make decisions, and everything overwhelms me. I don’t know what I want to eat. I don’t know when to make a plan with a friend, for fear that if I do, I’ll have to cancel because I’m too tired, and so I just tend not to make a plan in the first place. I don’t know what to wear. I don’t know what to put my focus on. I don’t know what my purpose is anymore, and that is especially hard. When there’s any sort of decision to be made, I generally can’t make it, and trying to do so overwhelms me.

Oh, and don’t even try to talk to me about the extremely time sensitive decisions I have to make surrounding getting my ovaries out because of my damned BRCA gene mutation, or about motherhood, having children, etc… because I DON’T KNOW anymore! I don’t know what I want anymore. Maybe it’s that my brain is shut down from having to have made so many life and body altering decisions during treatment, or that I’m terrified of making the wrong decision, so it’s better not to make any at all. Or, that truly, I really, actually DON’T KNOW, which could be a combo of chemo brain, decision exhaustion, loss of identity, and anxiety. But I’ll tell you what I DO know: it’s incredibly heartbreaking to keep hearing that your hormone levels are still menopausal, just when you think you might be getting back to normal.

Speaking of Anxiety… She and I have flirted over the years, but are now in a full on, full time tryst. I have anxiety about everything. Air -is what I’m breathing in carcinogenic? Lotion — is what I’m putting on my body carcinogenic? Food? I’m terrified that anything I eat/don’t eat, or drink/ don’t drink will cause me cancer again. Because how I ate pre-diagnosis was supposed to be healthy, but I still got cancer. So, how is what I eat now not going to do the same thing? Oh, and every cough? Lung cancer, I’m sure of it. I’m pretty much scared of everything irrational. My boyfriend texts me that he left work, and he should have been home by now? Car accident. Or worse, a fire in his office that most certainly killed him. The ceiling fan in the dining room when we leave our puppy alone? It has fallen on her and most certainly killed her.

And on top of this, add that now, due to no doing of my own, but rather a fucked up genetic fluke that I was born with and did everything possible in my power to prevent, I have a “pre-existing condition.” The amount of anxiety this causes me as to what the healthcare future will bring is off the charts. I’m going to need lots of screening over the years, and that shit is expensive. How will I afford it if pre-existing coverage is taken away? Or worse, will I even GET insurance?

I also feel other people’s, animals’, and the state of the world’s sadness a million times more than I did before. And that’s rough, because I was already very empathetic and sensitive. Things hurt and touch my heart and make me cry way more often and much easier than they did before (and that’s saying a lot, because I’ve always been quite the crier).

Oh, and let’s not even start on the body image stuff. It’s frustrating for me to not be as toned, strong, and in shape as I was pre-treatment, but instead of being kind, patient, and gentle with myself, I’m holding myself to standards that aren’t even attainable for a woman 10 years younger than I am who did not just go through cancer. Dude, I really don’t know what’s up with that. And my body’s shape and profile are different, because I have smaller boobs. I think, subconsciously, it is playing a major part in the shock of not being the same Holly I was.

I’m worried that my boyfriend is repulsed by my frankenboobs and is turned off sexually, not only because of that, but because he’s been my nurse (and an incredibly amazing one) for so many months. While that may sound naughty, in real life, it is definitely not. There’s no Ferris Bueller naughty nurse song and dance here.

Sharing all of this publicly is terrifying, obviously, since one of my biggest issues right now is fear of what other people think of me. But I think it’s too important to not write. I think it’s important for people to know that just because the treatment is done, and someone is deemed a survivor, their journey is not over. They are not the same person they were before, and are most likely struggling in some way, even if they put on a brave face. For the nearest and dearest to those who have just gone through anything traumatic — be it cancer or any other life or health crisis — please know that just because we may, on the outside, fit back into the box of what we looked like before, we are not, nor will we ever be, what we were before.

And I also thought it was important to write this even though it terrifies me to do so, so that other breast cancer survivors feeling like this know they are not alone, or crazy, or that something is wrong with them. Apparently, this is actually all very normal, and the majority of breast cancer survivors go through versions of it.

As we first emerge as new survivors, we don’t really know who we are anymore. We are struggling with chemical and physical side effects, along with emotional trauma. And once the treatment is over, the band of support that had showered us during treatment goes away, and it feels very lonely. Post-treatment is actually when survivors may need their loved ones’ patience, support, compassion, and understanding the most.

Please don’t get me wrong… I am so grateful to be alive. I know how lucky I am. And I have plenty of days and moments of joy, love, and appreciation, all experienced in more euphoric ways than before cancer. I just didn’t expect this. I guess I smugly thought I would breeze through recovery just like I wrongly thought I would breeze through chemo. But I made it through chemo, and a double mastectomy, and I’ll make it through this. I know I’ll be ok. and I WILL be stronger, eventually. But right now, I’m in the process of surviving my survival.