Recently I started thinking it would be neat to do an interview experiment. I could talk to women who I find inspiring, women who have a strong message or a unique voice. I know so many. Maybe I would do a Q&A or maybe I would just have some points to talk about and see where the conversation takes us. I have never conducted an interview before, but I figured I could pull it off with someone whom I have easy conversations with. Alina was the first person to come to mind as a subject. I ran the idea by her and she was down to be my first interviewee.
Alina is a spunky, sweet, strong lady that I connected with right away. We initially met through our social support group in kind of a round about way. She came to me for hair help, as I offer special services for women who are going through or are finished with treatment and trying to have some style with their hair as it grows back in. She didn’t know at the time that we met that I was having the same problem as her. We quickly bonded over the the unique physical trait that our cancer treatments had left us. Alina is also left bald, like me. We have something they are now calling “chemotherapy induced alopecia.” It is likely a permanent condition as a result of a specific chemo drug that we didn’t know could cause permanent hair loss, until now. Every time we meet we end up talking about what our baldness has meant for us physically, emotionally, sexually and socially. We talk about other things too, but it is really special to have someone who really gets what it’s like to be surprised by a permanent side effect to a treatment that we weren’t warned about. She was incredibly easy to interview since she is such a smart, vibrant conversationalist. I was nervous because I had never done this before, and told her such. I said “I think I’m just going to hit record on my phone and see what happens.” I didn’t do a lot in the way of research (unless you count listening to Fresh Air with Terry Gross a lot). I prepared a few questions that I have answered for myself in my own reckoning with my body image relating to cancer issues. Before we started she said something to the effect of “I hope my aura makes you feel more comfortable. I will let you know if there is anything I don’t want to answer. Lets just talk.” Below is our interview.
S: You have alopecia as a result of cancer treatment. Can you talk about your diagnosis and treatment first?
A: Sure. So, coincidently yesterday was my three year cancer diagnosis anniversary.
S: Oh, Happy Anniversary.
A: Yeah, so my husband and I were on our way to the flooring store. We are trying to prep for our little fella. So, all of a sudden I realized what day it was for some reason and I started crying. My husband said “What is it?” and I said “Do you remember when you asked me a couple of days ago if this was the time, and I said not quite yet but in a few days.” And here we are. We were both quite emotional about it. Understandably, when you think about how life has changed since that time. And you remember in this super fast flash, all that you went through and beyond that journey, after treatment ends, and where you are today. So, its just one of those really emotional amazing moments…So, to bring that back, about three years ago I was diagnosed with triple negative breast cancer. Essentially that is when your breast cancer cells have tested negative for progesterone receptor (PR-) and estrogen receptor (ER-) (and HER2-) gene expression. So, to date the knowledge about triple negative is that none of the above have anything to do with the cause of the cancer, so its the least known about of the types of cancer, and one of the rarer types. So, my treatment started off with six rounds of chemo and that lasted from February through June of 2013 and then I had a lumpectomy in July of 2013 and then I had radiation from August through September of 2013. So that was my treatment regimen.
S: So, they wanted to shrink your tumor before surgery?
A: Yes. So because of the reproduction rate of my cancer cells was 8 out of 9, they were producing like crazy. Essentially meaning that whatever stage I was in when I was diagnosed, in order to control that as much as possible, my oncologist recommended starting with chemo to shrink that fast growing mass and I was fortunate that my body was receptive to the chemo. With each follow up appointment we would recognize via palpation that my breast mass and affected neighboring lymph node were getting smaller and smaller that by my last chemo treatment, the masses were no longer detectable.
S: So, you couldn’t feel it when you went in for surgery?
A: I could not feel the mass in my breast or the one under my left arm, but that didn’t mean that there weren’t cancer cells still hanging out. The cells are so small that unless they mass together you can’t actually feel it by palpating. That didn’t mean that it still wasn’t hanging out.
S: Why did you opt for a lumpectomy?
A: A lot of people have asked me this question and a lot of folks want to know why I didn’t opt for a bilateral mastectomy. I answer that it is a very personal choice for all of us. There are so many variables to why women make that decision for themselves. I will start with my oncologist recommendations. Since I was only affected on the left side at minimum he recommended the lumpectomy but it was completely my choice if I wanted to have a double. He was completely on board with whatever my decision was. There are a couple of reasons why I opted for what I opted for. One: I tested negative for the BRCA 1 and BCRA 2 gene. That lead me in a direction. And also because I still had, cross your fingers hopes, that I would still be able to become a biological mom. It was really important to me that if I was able to I was able to still breast feed. And because my mass was in a duct and they took out a significant amount of tissue in which milk would be released from, and with radiation on top of it, I was told that the left side would most likely not work. So if I had one chance to provide breast milk for my biological child it would be by saving my right. So, for that reason it was a balance of risks for myself but also providing benefits for a potential child.
S: You must have had some sort of insight that that was going to become possible.
A: I don’t know that it was insight, I just had to maintain this mindset that I had to still plan for my life afterward. I had every confidence that I was going to make it through. Not for any reason that I had been given medically, but just mentally I thought this treatment is what I have to go through to make it, but I have got to continue with my plans afterward. You know, I figured if it wasn’t going to be possible to have a biological child, so this whole saving of the right side wasn’t going to be needed for breast feeding, Oh well.
S: You didn’t ever think, maybe I’ll go back and do the mastectomy if I try to get pregnant and it doesn’t work or if Im left infertile? Because you really believed that you would be healed from the cancer?
A: I did. When things change out of what you predict, then you make another decision. And it was totally my decision. So if it would have come to the fact, X amount of time after treatment, that I got a mass on my right side, then I would have dealt with that. Because it was my decision to leave it unaffected.
Im one that tries my best to simply go with the facts and try not to think about the negatives, not in a naive way, but that I will deal with things as they come along.
S: I think thats awesome because I think a lot of us, or I know I tend to, imagine every worst possible scenario. And so I went at it like ” I want my breasts gone, I want my ovaries out. Like, take it all.” They talked me out of the ovaries but supported the mastectomy.
A: I just got together with a friend for lunch and she has a similar mentality as you. I say that because I don’t think you’re alone in that respect.
S: I don’t either. So, can you talk about your hair loss?
A: Yeah, so I think my hair started falling out in chemo in kind of a regular schedule. I think it was after the second treatment.
S: And you did not cut it or anything?
A: Well, I didn’t initially. Because I was laid off from my job a month before diagnosis I was job searching. Believe it or not I was going to interviews with no one the wiser of why I was so fatigued. I didn’t even have the zest to feign interest in getting the job. I was near anemic and fatigued. I had that foot and hand syndrome where they are dry and cracked and purple and hurt. I had visible things going on with me. My hair was still “intact”. It was back in a ponytail and if I had moved my head in a certain way, chunks would have been falling out and it would have been apparent. My point is, I held off cutting it right away because I knew I had two interviews lined up and I thought ” I just want to have my hair in place.” But after those interviews I thought that this is ridiculous. Im just going to get rid of it and it will come back. We are all told it will come back. So my husband and I had fun in the bathroom with the clippers. So, I used to have straight long hair, maybe bra strap length or a little longer at times. So, he just gave me a shorter cut and then a bob and progressively shorter and shorter, to a mohawk and then shaving my head. We had fun with it. So, when you shave your head when it is just starting to fall out and you have hair follicles in existence, it covers your head. It looks like a decision. I will just say it simply. It can look pretty good. And I thought this could be kind of cute. Maybe I will wear it like this. But fast forward to after treatment, when I had waited 9 months for it to grow back and it had not come back, I was told that if it had not come back it most likely wasn’t going to. When I got to my year post chemo treatment mark and it wasn’t growing back, I said alright. Fuck it.
S: You accepted it after a year?
A: Not desirably. But I was like “What am I going to do? This is my reality”. I tried to tell myself to own it.
S: I remember you were doing some mushrooms and supplements and stuff.
A: The turkey tail mushrooms weren’t for hair growth but for immune system strengthening. I did try these herbs that an acupuncturist gave to me. What was discouraging from her is that she said it wouldn’t guarantee my hair growing back but it would make the hair that was growing in “thicker”. And I think what folks don’t understand is that chemo literally kills hair follicles. It isn’t that they are there and just need stimulation. They are GONE. I tried biotin, the typical connection to a nutrient deficiency. Even though in my mind I knew it wasn’t a nutrient deficiency. I knew it wasn’t a lack of massaging my scalp. Trust me I have heard the “have you tried, have you tried, have you tried…?”
S: Rosemary oil, tea tree oil, all of it.
A: Right. So, these things thankfully could have helped the majority of the population of folks. But for the rare few of us whose hair follicles are literally destroyed from chemo, these things don’t work for. I kind of made my own deduction based on the natural hair cycle that it was not coming back. After a year turned into two years and now about two and half years, my chances are slim. Here is my analogy. Imagine a lush lawn of grass. And theres about a trillion blades in this yard. And now envision that same sized yard, as lush as it was, with maybe 100 blades spaced out over this entire yard. The rest is just dirt. And you can see the dirt just like you can see my scalp. It is so freakin sparse. And the grass still grows, but I may not want to take a freakin lawn mower out there because Im going to kick up a lot of dirt. I mean, yeah, I shave it about every week because what’s there does grow. The longer it grows the more obvious it is that that dirt, that skin is visible. So the shorter I can keep it, in my opinion, it isn’t as obvious that there are 100 vs a trillion blades.
S: Mhmmm. I like that. I never know what to say to people because they see that its growing. So many people tell me to give it time and get over this awkward stage and I will have hair it will just be thin. I just tell them, No, its not really like that.
A: Oh! So, going back to when I said I would own it and shave it…You know Im not much of a Facebook person. Meaning like, Im more of an introvert and private person, so the rare times I post something personal about myself its like Im taking a big courageous daring leap to expose myself. In my mind. So, what I imagined is that at that year mark I shaved my head and had my husband take a picture of me. My plan was to post it on Facebook as kind of like a “coming out”. Me saying “this is me. this is me.” I posted that picture and I said something like air conditioning to survive this Austin heat. Some people thought this was my choice. They thought I dug the shaved look, rather than this was just my reality. And my hands are shaking as Im posting this, being very vulnerable. I did it to kind of help me, if someone saw me in person they wouldn’t be like “WOAH”. Knowing that not everyone would see that post but maybe some would be prepared by it and helps me not get that look of shock. That only lasted so long. Because as strong as I felt I was in accepting my reality, as the months continued after that point, as strong and confident I felt with this reality of mine, the looks the questions, the stares, the rubbernecking that I got continued to make it harder on me to maintain that look. As the months went on into the colder months and I started wearing hats, the hats just continued because I found it easier to go out in public when I didn’t get the jaws dropping, the rubbernecking, the questions about where I am in treatment. The hats became where my comfort zone lied, unfortunately, based on the majority of reactions that I have received…when i prefer not to wear anything, no wigs, no hats. As someone who likes to jog on the board walk, that summer, HOT, AUSTIN, I would run bald and I would get all of those things I just described to you. People would run by me and literally hurt themselves. Their neck would be going the opposite direction their body would be going. Squinched eyebrows of confusion, jaws dropping. I even had people make fun of it. Young twenty somethings gave the Doctor Evil look and giggled. When I share these stories a lot of people are shocked by the human reaction. But we are in a reality of women identity in the US has a great deal to do with her physical appearance and a good deal of that is her hair. How many times do you hear of women saying things about frustration with their hair or they’ve just gone to the salon to get a new color, a new cut, a new style? You know, so the expectation is you are maintaining a look, a style, as you progress in your personal and professional life that identifies a good deal of who you are. Someone who is now left without that option as part of my identity, those are the reactions I get. And part of me understands it. For men, its more commonplace. I know several men who have a very hard time with their hair loss. And I’m not diminishing that at all…
S: But they even have to acknowledge that it’s way different.
A: Yes. Yeah. They don’t get the stares. You are not going to look through a restaurant and continue to stare at a man because he is bald.
S: And you are not going to do a double take of a bald man jogging on Town Lake.
A: But you are very well going to stare at a bald woman and try to figure out why she is bald. Is it a choice? Is she going through treatment? Does she have some type of immune issue that she potentially had at birth or developed with time? You are going to try to figure out whats going on. And if you are a curious person you may even go ask her, which has happened to me before.
S: Oh yeah.
A: I actually appreciate folks that ask questions, rather than just wondering and making things up.
S: You are going to be a parent soon. Do you worry about how other moms will react to or perceive you?
A: No, I can’t help how others, in this case, moms think of me. Thankfully, my priority is now my son, not my bald head. Will I need to use my shame resilience to combat the hurtful reactions of others? Yes, of course. Some people (survivors, non-survivors, men, women, and kids) have stared, gawked, looked confused, offered unsolicited advice to solve my bald problem, and invalidated my feelings about my reality …so, some moms are not likely going to be any different. I will have to express how I feel and ask them for what I need from them in terms of support.
S: What makes you feel pretty?
A: Completing the whole canvas with makeup (not just penciled in brows) and a nice colorful outfit with accessories like earrings, boots, and a scarf (not just a hat)…the eyebrows and hat are just the daily outline. And, being in shape makes me feel healthy on the inside too.
S: You are facilitating a group session for women reading Brene Browns books. There is a quote from one where she says “…There were also many women who talked about the shame of having their physical bodies betray them. These were women who spoke about physical illness, mental illness and infertility. We conceptualize body image too narrowly-it’s about more than wanting to be thin and attractive. When we begin to blame and hate our bodies for failing to live up to our expectations, we start splitting ourselves in parts and move away from our wholeness—our authentic selves.” Do you identify to that passage in relation to your cancer treatment or your pregnancy?
A: I don’t relate to that passage because I don’t feel like my body failed me. I had triple negative, and its cause is currently unknown. When diagnosed at 36, I believed there was an environmental component that triggered a genetic vulnerability, perhaps. I blame my baldness, fucked up toe nails, and 2+ year infertility on chemo, not my body failing me. My body did the best it could to survive chemo’s wrath. Now, thankfully pregnant 3 years post-diagnosis, my right breast is about 5x larger than the left side which had significant tissue removed, and was radiated to hell. So again, I don’t blame my body failing me for having only breast preparing to breastfeed. I blame surgery and radiation. But, all these treatment measures saved my life. I’m now a bald headed, brow less faced, one big boobed, beauty. I feel fortunate to be able to join the world of biological mothers because I am able to experience how amazingly a woman’s body transforms to bring another human being into existence. This experience trumps my feelings of shame toward my bald head and brows and fucked up toe nails, but it doesn’t make them go away. 3 years post-diagnosis, and I’m still struggling to discover a new identity that feels authentic and natural to me.