What to expect when you’re expecting...nothing at all. A newbie sets up a microphone and states the manifesto
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@tterbazile
What to expect when you’re expecting...nothing at all. A newbie sets up a microphone and states the manifesto
Reconstruction Zone
Intestinal, bone, or lung cancers may or may not leave physical traces. With breast cancer however, the likelihood of a long lasting set of scars or tissue removal is high. Breasts are linked to identity, sexuality, womanhood. Fashion, confidence, poetry! Breast cancer surgery is deserving of particular spotlight. David Jay is a photographer whose collection 'The SCAR Project' invited women who have had mastectomies and/or reconstructions for a photo shoot. As Jay put it, “it’s very easy to look at the images and see breast cancer, but saying that would be like looking at the ocean and only seeing water”.
I am female, 25 years old, a PhD student who chose to research cancer recurrence stimulated by surgical reconstruction. There is a silencing sadness around the women who chose to reconstruct their breasts, only to arrive back at square one. Of course, it’s very easy to carry out research through PubMed, and gauge emotion through patient reported outcomes. For this field, however, the scientific literature did not seem enough. How could I venture into the world of reconstructive research and not comprehend the impact of this surgery?
To fill this gap, I have spent many wildly humbling nighttime hours in my apartment, reading the online community of breast reconstruction. The internet mosaic of experiences is rich, emotional, and deeply educational. I was amazed to be greeted by a talkative community, seeking scientific answers. One which has happy, disappointed, unsure women. Helping one another. Giving perspectives on drugs, surgeries, and bra hacks. The sheer openness of the women in this field is magnetic, and inspires reciprocal honesty.
Diana, a 25 year old who had a prophylactic double mastectomy has a positive experience to recount. She firstly had tissue expanders, which the surgeons later exchanged for implants. She uses her blog to helpfully outline her preparatory period before the surgery. Sexy photoshoot, increase fitness level, create ‘recovery throne’ at home: check, check, check. Diane Mapes uses her webpage to share her double mastectomy experience and reconstruction. ‘Brava’ is a suction cup system which pulls skin on the chest wall up, making space and new blood vessels. Her own fat tissue was then taken from elsewhere, and injected into the new breast pocket (‘autologous fat transfer’). She describes how yoga has helped her joint pain, and writes her website and books with refreshing zest. Nicole McClean’s description as a 'lop-sided freak' after her mastectomy can hardly be a more accurate tableau of the drive for reconstruction. Her reconstruction was performed using a TRAM flap; essentially, the bit of tummy that most women have. In moving that bit of stomach to the chest wall, a so-called ‘tummy tuck’ and a new breast simultaneously occur. Ms. McClean now owns multiple bikinis. Awesome.
These three women neatly capture the main trio of ways in which reconstruction is performed; implants, fat transfer, and flaps. During my reading, I found a lower number of testimonials from women who were far less happy with their results. Understandably, those who have a less-than-good outcome are not inclined to craft a website. I found the tales of unsuccessful reconstruction as independent articles, and disappointed posts.
Community webpages exist in which women describe issues with their implant reconstruction. The upsetting use of ‘hamburger bun’ implants is accompanied by anecdotes of unsuccessful bathing suit shopping, and flap-made breasts which don’t fit in any bras. Debbie Woodbury describes pain and numbness from her TRAM scar. Her Huffington Post article is scathingly ended with “God help the next person who refers to a TRAM flap as a ‘tummy tuck’”. Stefanie DelPrete chose a saline implant at the incredibly young age of 17 for her cancer reconstruction. She experienced an horrendous case of implant rupture, and subsequently decided to remove the whole thing.
There is a third, more grave cohort of women who are part of the reconstruction story. Those bound by cancer recurrence brought on by their reconstruction. This phenomenon is scientifically mysterious, clinically cruel, and hugely psychologically disconcerting. The horror of recurrence is manifest in the lack of stories available on the internet. The breast reconstruction process should be one of hope, excitement, repossession. Feeling a small lump in the stitch of your reconstructed breast is a slow moving nightmare I cannot begin to shape.
I speak now as a biological researcher in this field, having chosen to focus on perhaps the most frustrating, heart-breaking breast cancer stimulus: reconstructive surgery. I can only imagine the total disbelief, exhaustion, and bravery leaves room for little else, never mind an online presence. To those women searching for some type of meaning, I can only say: we know. We are working. Understanding the biology is number one, understanding how this impacts you is number one.
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I took the bird seed bra photo at ‘Costume’, an exhibition created by The Abbey Theatre, at the National Craft Gallery, Kilkenny, Ireland (2012).
Vitamin A+
2.5 years ago I posted about PCOS on this very blog. I did it because I felt lonely in my situation, wanted to inject humor, and maybe help someone exhale calmly. 2.5 years later I’m here once more, talking about skin. Specifically, acne. It’s nasty, I have a perspective, and you’re here, so let’s go.
Roacutane/Accutane = Isotretinoin: a type of retinoic acid.
A what?
Retinoids are related to vitamin A, but not identical. Roacutane is close to the same vitamin A that’s in liver/yams/carrots. (Did you know isotretinoin was a leukemia treatment in 1994? In short, it was recognized that retinoic acid could stop spontaneous growth of immune cells (https://www.ncbi.nlm.nih.gov/pubmed/7605422)). It’s primary target today is for acne, working to shut down the skin sebaceous glands, which are the ones pumping out the oil. This pharmacological effect was initially described in 1986 (https://www.ncbi.nlm.nih.gov/pubmed/2940935).
I believe everyone has one degree of separation from someone who is on Roacutane, which is why I’d like to talk about it. In the past, I’ve written about weight loss and PCOS. In truth, those were cakewalks for an open, shameless book like me. However, there’s a lot of inherent nastiness about ‘blemishes’, spots, cysts. Awkwardness and embarrassment, too. In the spirit of sharing the human experience, I’m posting this. Also, I’ve now just stopped caring. I wonder if it was the sterile equipment smuggled from the lab with which I would perform my own late night surgeries, the doctor appointments for the actual surgeries, my scarred breasts or inobscurable evidence. Or indeed, filling Eppendorf tubes with concealer and hiding them in my bra, for midday touch ups (proud of that one).
The first side effect of Roacutane brought with it some excitement. While on a roadtrip through Glendalough, I noticed my lips were not necessarily dry, but taut. How uncomfortable. Like someone who knew a storm was coming, I was hit by the first raindrop that day. My initial thoughts were, ‘IT IS WORKING ZOMG HERE WE GO’. Following this were weeks of red, dry skin. I’ve heard of friends who pierce vitamin E capsules and embalm their face in the contents. Flying through lip balm as though it is a food group. Drinking so much water you feel sloshy. I had an hour without putting Vaseline on my lips a few days ago, and transformed into a ventriloquist as to not split my mouth.
It’s fascinating to me that there are multiple studies which say isotretinoin is not linked with depression or anxiety, and that when prescribed for acne, it may indeed improve mental state (https://www.ncbi.nlm.nih.gov/pubmed/27014604) (https://www.ncbi.nlm.nih.gov/pubmed/28291553). That said, it is the ONLY non-psychotropic drug in the top 10 FDA drugs which is found linked to depression (https://www.ncbi.nlm.nih.gov/pubmed/26110123). So, it’s not really clear where we stand there.
Arguably that doesn’t matter, because we are not taking isotretinoin for our mood. We’re on it because our skin is akin to a molten equatorial landscape. Mood impact by this drug is just a side effect which may only hit a few of us. Anyway, can’t we just get over the depression or anxiety, and think how sexy we will look in x month’s time?
I’m a happy person, able to pretty effortlessly wake up content. It’s true that I can laugh at things for hours - very lucky this way. When I first heard of anxious/depressive side effects of Roacutane, I smiled inwardly. I’m impervious to mental health problems! Bring it, bitch! A small part of me looked forward to seeing how well I was going to handle this.
Here’s a pretty telling screenshot from PubMed (a large database where biological scientists can get their literature).
I’m not a poet, so you’ll gain nothing from reading my tomes on anxiety. However it appears to be pretty commonly acknowledged in the field as a side effect. Dividing the side effect from your own current reality is really the only situation the Frodo/ring analogy may be used. This is where I am.
We’re all covered in a version of the same tissue. Some people have a difficult time keeping up with everyone else. I’ve roasted Instagram in the past for perpetuating image, but this is beyond Instagram, or any social media platform. Having clear skin is a keystone around which positive image can be built. Having clear skin is evolutionarily programmed to convey health and attractiveness!
So, shout out to all my crystallized, anxious/depressed brothers and sisters. I share in your dry skin, inability to focus and fervent hope for permanent skin improvement. See your sparkling face on the other side.
Size Hero.
I enjoy quantifying things. I think it’s important to have a grip on stuff that can run away from us, like money, time, tea bags. However, there is a fine line between productive and counter-productive when measuring weight, BMI, and calories.
There is a general guide on what is a healthy BMI, of course, but I was outraged recently to attend a doctor’s appointment where my BMI was (considered healthy, and) in a range which was “likely to be found most attractive”. I beg your pardon? As an example, my BMI was on the upper scale of ‘healthy’. But what would it have meant if I had reached the pre-delineated limit? Heart problems. Risk of diabetes. Future back issues. And god forbid, I’d leave the range that was determined most attractive. I’m gonna go ahead and say, not necessarily true.
What I love most is the #StrongNotSkinny nu-wave. Let’s evaluate what this looks like, using a simple search on Instagram.
Here, we see girls with what appears to be 0% body fat, revealing chiselled musculature and tanned skin. More power to them! I’m sure they feel great, and don’t they look wonderful. (Don’t get me wrong - fat burning is a side effect of eating protein and lifting weights, but I wish to address a different motive behind changing your body).
What I take issue with is the skinny campaign masquerading behind #StrongNotSkinny, #GirlsWhoLift, #LegDay and #EatCleanTrainMean. There is palpable pressure created by hashtags and pictures like these. It’s the reality of being surrounded by social media which tells us daily how preparing overnight oats is a great use of time between HIIT workouts.
What if I want to have a peanut butter cup with my coffee? Does that mean I have to kill it for 20 extra minutes on the crosstrainer? Having once lived through that reality a few years ago, I know that’s what happens. I also know the dread that accompanies being in social situations where consumption is required, even just for drinks. Ordering vodkas on the rocks, for their low caloric content, is a very dark recollection of mine.
Being thin, I was perceived very differently than how I am at a normal weight. I’ve been hit on with uncomfortable effort, and once told explicitly by a total stranger that I was ‘the only girl he’d fuck in this whole bar’. People in stores told me I had a really pretty face. I’ve been told by peers that I looked great. I’ve been asked to model for a photoshoots. People asked me what was my secret. At this query, I’d respond with something very editorial, like “I cut out sugar, substituted white rice with brown, and worked out 3 times a week!” The real secret was much simpler; I’d stopped eating.
I could spend lots of internet data describing the quiet terror that accompanies eating problems. What I want to write is this: age 23 I have a good grasp on my own body image. I’ve learned a few things about how to deal with the perfect figures presented to us everyday. Right now? I definitely have a stomach. My face doesn’t have hollowed cheeks. There’s a fairly sizeable arse in question. And while I may not be a fan of my facial profile, my upper arms or slight double chin, I feel very good, day in day out. I have energy, because I eat food which gives me energy. I also have some junk food sometimes, and that’s totally ok, I’d climb through ditches for that Reese’s peanut butter cup. I enjoy cycling my Raleigh bike. It feels very nice to be in my skin!
For anyone who’s thinking ‘she’s only justifying her size and pigging out via this self-indulgent blog post’, I can guarantee you this: when I’m 60 and looking back, I’m gonna dream about how I had ice cold beers & guacamole in the sun, and not about your toned shoulders.
I’ve had some problems in the past, and been through a few things, just like everybody else. There is nothing exclusive to me in this blog post, many people in the world can directly relate to this topic and perhaps even some of you reading this right now can also. Hang onto the people who honestly care for you, and go to the effort of telling you things you may not want to hear at the time. There is always someone who wants to help people toss insecurity out the window – you’re reading the words of one such individual.
Wrapping up with Dove’s wonderful Campaign For Real Beauty from 2004, shown above.
Eliza, why are you writing all this?
I wish I had something similar to read when I was going through my low weight days. It’s ok not to be toned, thin and lean. Maybe that’s blatantly obvious to some of you, but I needed some help in that department. Also writing this because tterbazile has evolved into my own real world of opinions and thoughts. Who’d have thunk?
Let’s embrace how we look and who we are!!! Our bodies are amazing things!! And you are exceedingly attractive as a real human.
If you are still not convinced I’m deferring to Nina Simone
https://www.youtube.com/watch?v=L5jI9I03q8E
Med to be?
I have degrees in Biomedical Science, and Burns, Plastic & Reconstructive Surgery (are you weak in the knees yet?). I’ve had the pleasure of working and living with medical doctors in several different contexts. My family has medical ties. If I were a stem cell, I’d classify my environment as highly inductive for doctor-differentiation. And so, I’ve found myself envisioning Dr. Brett as a reality; changing the lives of patients and families, throwing snappy, clever remarks at my interns, and living out my days to the opening theme tune of ER. Plus I look damn good in scrub-blue. Many have asked me if I’m going to go to med school. It’s a tempting thought. It took purchasing MCAT preparatory material for me to snap out of it. Had I truly wanted medicine as a career, I would have sought out medical experience in my free time, not scientific research. I would have sat down and seriously contemplated the commitment this endeavour would take. And ideally, I’d also have an innate sense of ‘patient care’ (the extent of my skills here inarguably peaked in 2007, where I made a drinking straw out of cling film and the curled up side of an Uncle Ben’s rice box, for my tonsillitis-stricken sister) (while that was helpful, skills like that can’t really translate in a regulated hospital setting). Thus, with a red face, I returned to the bookstore about an hour and a half after my MCAT book purchase and transacted, mortifyingly enough, with the same cashier.
"What's the purpose for the return?"
"Um, I changed my mind. Didn't want it". This isn't a t-shirt or mug I was returning, the 1497-page tome was symbolic of years of training, effort, money, and exams. For something that wasn't a DREAM of mine!? The mission was promptly aborted. And that's a-ok. My face turned from the embarrassed puce red to it’s normal, heavy-drinker red. I don’t know how many of you are contemplating a move in your career/education. But... Some wise man told me once that the toughest decisions are the ones we make to take no action. Killing an idea is sometimes the best thing you can do!
And so, in the spirit of laughter being the best medicine, here's the receipt that represents the closest I'll ever get to med school. Handed to me by Eric, the very hungover and disinterested-looking guy behind the till. Moral: be sure about your career commitments & don't be afraid to kill the things that aren't your dreams!
PCOS I can.
This post is not designed to make you feel uncomfortable, but there’s a high chance it might. You will read a frank account by an honest twenty-something year old female on the subtle nuances and falling grand piano-facts of PCOS.
PCOS (acronym): Polycystic Ovarian Syndrome. A condition which affects approximately 1 in 15 women of child bearing age. Ovaries are swollen due to fluid filled cysts, resulting in abnormal ovulation and hormone imbalances.
Yes thank you WebMD. It was in London where a doctor first tentatively informed me my ovaries were ‘quite cystic’. A fact later corroborated by a less dainty doctor in California, who actually quantified the fluid filled spheroids out loud and tilted the screen towards me, so I could see. “…three, four, five, yup honey, that’s six, seven….” She then promptly used that ultrasound wand to pop a follicle which was about to naturally burst, a blinding pain which I can only (and perhaps finally) compare to that of being kicked in the balls.
Anyhow, I’ve had minor-but-not-minor issues with hormones for as long as I can remember. Any pill I have been on has resulted in weight gain, loss, skin improvements and detriment, sunny moods or black demeanour. Not to mention the unsettling and constant absence of a normal cycle, when some of my female counterparts can incredibly predict the day their period is due. Don’t get me wrong, a Swiss-watch cycle would be wonderful, but it got to the point where I was desperate to see ANY ovulation activity (after about 6 months no period).
And so, I did what I could being a trained scientist; formed a hypothesis and tested it. Below is the paraphrased abstract.
Hypothesis: Fat deposits in the body affect hormones and therefore ovarian function.
Methods: Maintain current weight (65kg) for 3 months, notate cycle [A]. After 3 months, lose 8-9kg. Notate cycle [B]. Following this, gain half the lost weight. Maintain for 3 months, and notate cycle [C]. Subject was not on any contraceptive pill throughout time points.
Results: [A] irregular cycle (1 period every 1.5 months). [B]: No period. [C]: Monthly period.
Conclusion: Fat helps.
I openly address the fact that women’s health is hugely personal, in the sense that it varies massively from one woman to the next. So, while this study is basic and only having an n of 1, I found the simple result compelling. Finding a weight which suits you can actually help initiate and maintain a cycle. And, chances are this is a weight which your body will naturally equilibrate at (referred to as a ‘setpoint’, described here in 1990 http://www.ncbi.nlm.nih.gov/pubmed/2253845).
Perhaps the most unsettling thing about PCOS, no matter the severity, is the ‘i’ word that rhymes with invalidity. Being told you may face considerable difficulty getting pregnant is generally not what women want to hear. Neither is the throwaway remark by one of my past lecturers, “if you cannot procreate, you are an evolutionary failure”. (That was said out of the context of PCOS, but still).
Having PCOS, you might have been told you’ll face trouble having kids. You might refuse painkillers and actually embrace period cramps when they do come along. You’ll have moods which make you feel like the only cycle you’re on is the lunar one, and your skin will be like a relief map of the Andes. I just want to say - I CARE. And we’re together.
This post isn’t to announce any calls to action or to even give advice. Rather, to air the above thoughts which may resound with some of you 1-in-15 women. But I will say this - don’t be afraid to change your current body weight a little to see the effects on your cycle, whether that’s losing or gaining.
Yours truthfully, Madame Ovary. (that’s disgusting, sorry Gustave)