For as long as I can remember, I have always put a lot of pressure on myself
to be the 'est': tallest, funniest, smartest, youngest, well, you see where I am
going with this. By the time I was in grade 4, I was four feet, eleven inches -
needless to say, tallest was not difficult through my formative years. In my
double cohort graduating high school class, I was voted funniest female and I
was not afraid to put that on my resume for the few years that followed
(funniest? Check!). By the time I was 24 years old, I had earned three degrees -
well, at least three pieces of paper say I'm smart(est). And by the time I was
26, I was diagnosed with breast cancer, something that not many other 26 year
olds can achieve (Youngest? Also Check!).
While I spent the first 26 years of my life putting pressure on myself to
achieve all the important 'ests', I was not prepared for the pressure that I was
about to feel as a cancer survivor. I'm not sure how many times someone has
asked me the reason that I was diagnosed with cancer; microwaves? deodorant? the
birth control pill? too much meat? not enough meat? too much stress? did you
swallow a bottle of cleaner as a kid? did every female ancestor in your family
have breast cancer before you? the gene mutation? tap water? And with this
barrage of questions comes a certain pressure that no one intentionally puts on
me but it weighs heavily none the less. Along with these questions come a deeper
questioning; 'Now that you've had cancer, you don't still use a microwave, do
you?', 'You're not going to eat that chocolate bar, are you? You know what sugar
can do to you, especially now that you've had cancer, don't you?', 'What? You
don't eat organic EVERYTHING? You are a failure at being a cancer
survivor!'.
I consume so much of my day with questions of 'What would a good cancer
survivor do?'
We are faced with so many questions about what to eat, what not to eat,
supplements to take, pills to avoid, and interactions to consider that it
becomes so overwhelming and the result many times is a guilt induced binge-fest
on everything that we know is bad for us. I gained a whopping 33 lbs with cancer
and chemo. Wait, aren't you supposed to lose weight when you're going through
chemo? Ya, that's what I thought too. But with breast cancer, it's different.
When they start playing with your hormones, when you eat anything that you can
keep down regardless of nutritional or caloric value and when you limit your
physical activity because the thought of walking to the bathroom exhausts you,
you pack on the weight. Oh, and because I am in a medically induced menopause,
the cancer drugs that I'm on now help pack on the weight, too. Yes, if you're
wondering, I AM living the 20-something dream!
Many times, when I would obsess over eating the right thing or avoiding the
wrong thing, I would feel so overwhelmed and helpless that I would find myself
wondering 'What's the point?' and I would eat myself into oblivion. Anytime I
would start to research post-cancer foods or cancer survivor diets, I would find
opposing viewpoints; coffee is bad because of the caffeine/coffee is good
because of the antioxidants; bananas are good because of the potassium/bananas
are bad because of the potassium. Avoid sugar. Avoid fat. Eat enough
fat. Avoid carbs. Our body needs carbs. Become a vegan! You need meat... Holy
crap, it is so overwhelming. Actually, just out of curiosity, I just googled
'too much broccoli' and articles actually popped up. Seriously?
When our life has just been flipped upside down, we have been hammered with
toxic chemicals, we are beaten and battered, we are many pounds heavier than we
were, and we have no energy with no promise of any in the near future, where do
we go? Where do we start?
Back in January, I started to realize my addiction to pop (soda for my
American friends). I loved pop, a lot. It was that 'thing' that I could never
give up. Take away chocolate, and candy, and pizza but don't ever take away my
pop. In all the research that I had been doing, with all the different food, and
all the opposing viewpoints, I couldn't find one article that said that pop was
a good thing or that its contents were beneficial in anyway. At that point, I
decided to try to make it a week without a pop; a little 7-day challenge if you
will. I didn't think I would last three days but one day turned into two which
turned into four which turned into a week and ten months later, I haven't had a
drop of pop. I mean, I still dream about it, and most mornings I wake up hoping
that it was just a nightmare, but to this day, I haven't had any since I gave it
up. This gave me a little momentum and I started trying this little challenge
with other aspects of my life.
I started upping my veggie intake. I like vegetables, luckily, but I have
never been a big vegetable eater (well post-mom's cooking). I decided to try to
eat 4-6 servings a day - I challenged myself - and it worked and now I just
naturally gravitate towards the vegetables, I even crave them. Don't get me
wrong, I still like all the bad stuff but I make sure to get my vegetables in to
me and then if there's room, I go for the bad stuff and to be honest, there
isn't usually room. I also tried eating less processed foods. I am no pro at
this but I definitely limit what I consume when it comes to prepackaged meals in
a can/frozen/vacuumed-packed container.
Two weeks ago, I got on a juicing kick and decided to do a three day juicing
detox. I know, right? Why would anyone not eat for three full days and only
consume homemade juice that isn't the most delicious tasting liquid in the
world? Well, I thought after going through chemotherapy and still currently
being on cancer drugs that it was a good idea to detox, to give my digestive
tract a break from the ups and downs of chemo and cancer (a long overdue break).
Day 1 was so hard and if it hadn't been for Keith, I think I would have quit.
Day 2 was just as hard but at least I knew that I could say 'tomorrow is the
last day' and Day 3 was easiest although we did spend a lot of that evening
planning the food we were going to eat the next day. Actually, we had planned to
order pizza because we were both craving salt and couldn't imagine anything
saltier. And then, when the time came, oddly enough, we both just wanted salad.
I know that sounds like I am making it up, or that I am getting paid by a
juicing company to say that, but honestly, we both just wanted nutrients. It was
like our body had rebooted and once we could eat again, once we could
have the salt, and the sugar and the garbage, we didn't even want it.
To be honest, I wasn't expecting that. Bonus!
But, this challenge approach has not all been about what I consume, it has
also been about exercise. I rely on public transit and I walk a lot but I am not
someone who exercises for the sole purpose of exercising. I also found that
after I felt a little relief from the residual chemo fatigue, Tamoxifen was
right there to pick up where chemo left off - I am still tired from cancer.
Needless to say, I haven't had the most energy in the past two and a half years.
But regardless, I decided that on October 1st I was going to join a gym and go
for five days a week for the whole month. I could quit on November 1st if I
wanted to but I had to make it through the month and I had to go five days a
week. When I go to the gym (I have been a member at a few gyms over the years) I
am not someone who likes to ease into it. Every day that I have gone, I've burn
800-1000 calories (an hour on the elliptical and then weights). The first week
was the hardest. I was so warm for hours after my workout because my circulation
was going crazy and then I would freeze for another few hours. I was sore all
the time. I was so tired. I didn't think I could last the week let alone the
month. I just kept telling myself that I want to enjoy things like baseball
again (which I haven't played since cancer), and I am getting married at some
point in the future, and I know about the correlations between being overweight
and the recurrence of breast cancer, and an hour on the elliptical gives me time
to think about the good stuff - the endorphins just encourage good thoughts.
Well, wouldn't you know it, I'm still going to the gym 52 days later, five days
a week and I am down 17.5lbs. At the 15.5lbs mark, I had officially lost the
last of my chemo/cancer weight. Did that ever feel good! F-U cancer, and the
horse you rode in on.
I am going in next Tuesday (the 3rd) for the last of my three surgeries. I am
getting my expanders exchanged for implants. So that means six weeks of no
elliptical or weights. I am nervous about the break in my routine but let's be
honest, no pop is much harder than being on the elliptical for five hours a week
and I'm ten months deep with the 'no pop thing' so I should be able to get back
to it mid-January.
I know what it's like to feel like you need to make a change but feel
powerless. Consider giving yourself a seven day challenge. Start with something
achievable (which is different than easy). Giving up pop was achievable but it
was not easy. Eating more vegetables was achievable but not always easy. As a
cancer survivor, it is so easy to feel the pressures of needing to change your
entire life over night but instead of trying change everything and succeed at
nothing, try changing one thing at a time; you'll be surprised how long seven
days can last.
Thursday, November 21, 2013
Thursday, August 22, 2013
A Natural Ambition
Having cancer in your twenties presents issues that you may otherwise not face if diagnosed in your fifties or sixties. Issues include; worrying about student loans, being isolated from your peers, the loss of your womanhood in your prime (in my case, part of it was surgically removed) and the ever-looming (in)fertility.
I had six rounds of chemo and Tamoxifen has put me in a medically induced menopause. Ah, menopause at 27, 28, and now as of last Wednesday, 29. Yep, sure am living the dream these days. I still get my period and (because they just don't have the research about young women on Tamoxifen) they aren't exactly sure if that is a good thing or not - I've been told two opposing viewpoints by two different oncologists. At the start of each period, I have a sense of relief because for another month, I have managed to avoid permanent menopause at 29 years old.
With social media, I am bombarded with pictures of babies. When I see friends who post pictures of their 'positive pee stick' (yes people do that), or their growing bellies or their newborns, 1 year olds or the first day of school pictures, I feel lost.
Not one part of me is angry with friends or frustrated with them, shit if I had a baby, I'd be plastering those pictures on Facebook, Twitter, Tumbler, can you post pictures on LinkedIn?,;you get my drift. But, it seems that if my double mastectomied chest wasn't reminder enough that I may never have children, Facebook and Instagram are right there to reinforce it.
Although I know that being pregnant would not be the safest thing right now, I think about it all the time. In an alternate universe where I didn't have cancer, I would be pregnant with my second baby and in love with my first. But we don't live in an alternate universe and here's my reality; last month, after I was about four weeks post-op, I missed my period. That is my first missed period since chemo ended. On about day three of being late, the thought crossed my mind that I may be pregnant. I have an IUD in place but weirder things have happened. I'm not going to lie to you, day three to five was a bit of a mind-fuck (excuse the language but I have devoted a solid three minutes to coming up with a less abrasive, equally descriptive word to describe my feelings and I couldn't). I kept thinking 'I can't be pregnant, I'm on Tamoxifen, I have an IUD, I only have a 40% chance, there's no way' and the other part of me was cheering, 'I could be PREGNANT.'
On day six, I took a pregnancy test and although I knew better, I had hope (for some twisted, delusional reason). I stared at that test waiting for the second line to appear to signify pregnancy and although the test said results would appear in 90 seconds, I gave that second line at least seven minutes to appear. The second line never showed up but on day seven, my period did. It was late (I'm assuming from the anesthesia and myriad of prescription drugs that I was on after my second mastectomy only weeks before). I know that I can't get pregnant right now (not 'can't' like it's impossible but 'can't' like I'm still in treatment [Tamoxifen]) but that second line would have meant that pregnancy was possible.
I know women who have had babies after chemo, I have even met said babies. I know this isn't impossible and although I am not one for statistics, I had a less than 1% chance of getting breast cancer at 26 so a 40% chance of getting pregnant seems pretty high with my track record. So many friends are enjoying the happiness of parenthood while I'm waiting for my next surgery; being the one who has loved kids since I was six years old and being surrounded by so many people who seem to get pregnant by what seems to be just laughing too hard is heartbreaking.
So in true Katie fashion, in heartbreaking times, I like to torture myself with music that really drives the point home. You know when you hear a song and it’s like it was written for you? Look at these lyrics:
It felt like a given,
something a woman’s born to do
A natural ambition to see a reflection of me and you
I'd feel so guilty, if that was a gift I couldn’t give
Could you be happy if life wasn’t how we pictured it?
And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.
Yep, lyrically, that about sums it up!
The thing about cancer is that it affects so many lives, regardless of whose body it’s harbouring. Keith has had so many choices made for him without ever being asked (and without ever complaining) but how do I not feel guilty for making him wait, for not knowing if I can give him the gift of life?
I've talked with a few girlfriends about the way we used to see the world. When we were in high school we imagined graduating from university, getting a good job, marrying our prince charming, having a few kids and living the dream. Life was easy, dreams were attainable, the future was definite. Now, some of us have dealt with loss and pain and hurdles that have not only tripped us but have made it hard to get back up. I know that cancer has taught me lessons about life that many adults twice my age still haven't learned but I beg the greater powers at be not to teach me the lesson of being a childless woman.
And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.
I had six rounds of chemo and Tamoxifen has put me in a medically induced menopause. Ah, menopause at 27, 28, and now as of last Wednesday, 29. Yep, sure am living the dream these days. I still get my period and (because they just don't have the research about young women on Tamoxifen) they aren't exactly sure if that is a good thing or not - I've been told two opposing viewpoints by two different oncologists. At the start of each period, I have a sense of relief because for another month, I have managed to avoid permanent menopause at 29 years old.
With social media, I am bombarded with pictures of babies. When I see friends who post pictures of their 'positive pee stick' (yes people do that), or their growing bellies or their newborns, 1 year olds or the first day of school pictures, I feel lost.
Not one part of me is angry with friends or frustrated with them, shit if I had a baby, I'd be plastering those pictures on Facebook, Twitter, Tumbler, can you post pictures on LinkedIn?,;you get my drift. But, it seems that if my double mastectomied chest wasn't reminder enough that I may never have children, Facebook and Instagram are right there to reinforce it.
Although I know that being pregnant would not be the safest thing right now, I think about it all the time. In an alternate universe where I didn't have cancer, I would be pregnant with my second baby and in love with my first. But we don't live in an alternate universe and here's my reality; last month, after I was about four weeks post-op, I missed my period. That is my first missed period since chemo ended. On about day three of being late, the thought crossed my mind that I may be pregnant. I have an IUD in place but weirder things have happened. I'm not going to lie to you, day three to five was a bit of a mind-fuck (excuse the language but I have devoted a solid three minutes to coming up with a less abrasive, equally descriptive word to describe my feelings and I couldn't). I kept thinking 'I can't be pregnant, I'm on Tamoxifen, I have an IUD, I only have a 40% chance, there's no way' and the other part of me was cheering, 'I could be PREGNANT.'
On day six, I took a pregnancy test and although I knew better, I had hope (for some twisted, delusional reason). I stared at that test waiting for the second line to appear to signify pregnancy and although the test said results would appear in 90 seconds, I gave that second line at least seven minutes to appear. The second line never showed up but on day seven, my period did. It was late (I'm assuming from the anesthesia and myriad of prescription drugs that I was on after my second mastectomy only weeks before). I know that I can't get pregnant right now (not 'can't' like it's impossible but 'can't' like I'm still in treatment [Tamoxifen]) but that second line would have meant that pregnancy was possible.
I know women who have had babies after chemo, I have even met said babies. I know this isn't impossible and although I am not one for statistics, I had a less than 1% chance of getting breast cancer at 26 so a 40% chance of getting pregnant seems pretty high with my track record. So many friends are enjoying the happiness of parenthood while I'm waiting for my next surgery; being the one who has loved kids since I was six years old and being surrounded by so many people who seem to get pregnant by what seems to be just laughing too hard is heartbreaking.
So in true Katie fashion, in heartbreaking times, I like to torture myself with music that really drives the point home. You know when you hear a song and it’s like it was written for you? Look at these lyrics:
A natural ambition to see a reflection of me and you
I'd feel so guilty, if that was a gift I couldn’t give
Could you be happy if life wasn’t how we pictured it?
And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.
Yep, lyrically, that about sums it up!
The thing about cancer is that it affects so many lives, regardless of whose body it’s harbouring. Keith has had so many choices made for him without ever being asked (and without ever complaining) but how do I not feel guilty for making him wait, for not knowing if I can give him the gift of life?
A few months ago, Keith and I were lying in bed and I asked him
if he could picture his life without kids. The conversation went like this:
Katie ‘If I can’t give you children, will you still be happy?’
In true Keith fashion he said ‘It’s not a matter of you giving me children, we can either have children or we can’t.'
Keith and I have stuck with the idea that ‘if it’s meant to be then it’s meant to be'. I will be done Tamoxifen when I'm 32 and although that is not old when it comes to reproduction, chemo accelerates the aging of your ovaries and they could be 'as old as' 44 when I'm only 32.
On March 16th, 2011, my oncology surgeon told me that chemo would significantly lower my chances of having a baby so much that it was more likely that I wouldn't have children. I cried more that day than the five days prior when I found out I had aggressive stage two breast cancer. Katie ‘If I can’t give you children, will you still be happy?’
In true Keith fashion he said ‘It’s not a matter of you giving me children, we can either have children or we can’t.'
Keith and I have stuck with the idea that ‘if it’s meant to be then it’s meant to be'. I will be done Tamoxifen when I'm 32 and although that is not old when it comes to reproduction, chemo accelerates the aging of your ovaries and they could be 'as old as' 44 when I'm only 32.
I've talked with a few girlfriends about the way we used to see the world. When we were in high school we imagined graduating from university, getting a good job, marrying our prince charming, having a few kids and living the dream. Life was easy, dreams were attainable, the future was definite. Now, some of us have dealt with loss and pain and hurdles that have not only tripped us but have made it hard to get back up. I know that cancer has taught me lessons about life that many adults twice my age still haven't learned but I beg the greater powers at be not to teach me the lesson of being a childless woman.
And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.
Sunday, June 16, 2013
Turtleneck Nuptials
We stood, with our arms wrapped around each other. He thought it was a long hug, I knew that it was my security blanket. He felt my lungs hiccup with air and asked 'what's wrong', I said in a quivered voice 'I'm scared'.
...
After being back from India for two weeks, after feeling good about life and living, after feeling a little more fulfilled than before I left and feeling worthy of love, Keith proposed to me. I have been giddy ever since. I am so proud to wear his ring, I am so proud to be his wife someday. I am proud to call him mine.
I haven't tried on a wedding dress yet as I feel like my mastectomy scars will be the spotlight instead of the dress. This prompted a call to my plastic surgeon's office where I had been about five month prior discussing reconstruction options.
So as a refresher, I had a mastectomy in 2011 and at the same time, I had a tissue expander put in as well as having a reduction on my left side to even things out. Once I was fully expanded, the plan was to have the exchange surgery in January of 2012 and 36 hours before my scheduled surgery, my plastic surgeon called saying there was a mix up/ no OR time / he couldn't reschedule me until May / more prolonged cancer garbage. I decided to go back to work in March of 2012 and in August I decided to change plastic surgeons, to someone who I had met and liked immediately and who I knew did great work. I saw her in November and we too had a plan.
During my November appointment, I came to the realization that as long as I had one reduced breast (that I felt like wasn't even my own anymore) and one (partially) reconstructed breast, I would always have one breast that always had cancer in it. They would never be a pair, a set, or a match.
Over the next few months, Keith and I discussed a prophylactic mastectomy on my left side. We weighed the pros and cons and I came to the conclusion that I wanted to get it done. So I called my 'new' plastic surgeon's office in March, once my Indian travels were over, and at that point, I realized that I had fallen through the cracks again. My file had not been dealt with, faxes hadn't been made, calls had not been dialed, I was in limbo again. After expressing my extreme frustration with waiting five months with no resolve, the ball started rolling again.
As a side note, it is extremely difficult to be an advocate for yourself when it comes to reconstruction - let me tell you why. There is an immense sense of vanity that comes along with wanting to have breasts again. I can't imagine that this vanity exists with many other body parts that are reconstructed but because a breast is so closely related to sexuality, it is so incredibly easy to feel vain when trying to regain a part of your body that cancer stole from you.
So, as the ball was rolling again, my plastic surgeon's office advised me to call my oncology surgeon's office to let her know that I wanted the prophylactic mastectomy (which I would like to point out that I wanted in the first place in 2011). I made the call and was left a voicemail in return within a few days explaining that she was not taking on any new patients for prophylactic mastectomies and that I would have to go through my family doctor to get a referral to a new oncology surgeon to do the prophylactic mastectomy. This was all in a voicemail!!!
I called the office back, said that was unacceptable and that I wasn't going to start all over with a brand new surgeon especially because I am not a new patient and that could take years. And then emotion took over and I said 'I am engaged and I refuse to wear a turtleneck wedding dress at my own wedding. I need to move on and without these surgeries, I won't be able to.' The receptionist felt awful (which was not my intention, I just became so emotional) and said she would speak to my oncology surgeon and would get back to me. Within a few days, she got back to me and let me know that she would do the procedure for me.
So, now we are back on track and I presume that surgery will be hopefully by the end of the year until, oh wait, my expander ruptured on May 24th because really, why wouldn't it?? So, in to the plastic surgeon I go and surgery has just become an ASAP situation. Needless to say, surgery is on Tuesday, in about 36 hours, and I am going through a whole whirlwind of emotions.
Because I have wanted a prophylactic mastectomy for two years now and have been told for all 24 months that it is NOT what I want, I feel relieved that it is finally happening however a few realities have set in. Tonight will be my last Sunday night with a real breast and although it has been reduced and it is not the way it was made originally, it is my own tissue and it is mine. I take some comfort in that. Tomorrow will be my last Monday and my last day with my breast and I know that thought will consume my day. How do you prepare for losing a body part and having it be replaced by something that is known in daily conversation as 'fake'?
The other day someone asked how big I was going to go (kind of personal but I am pretty open about it). I told her that it isn't entirely up to me because we have to make sure the skin and muscle stretch to a certain size, your body shape has an impact as well as other factors. Anyway, this woman seemed surprised that it wasn't just as easy as saying 'Double D, please'. I explained to her that this wasn't a breast augmentation but instead a reconstruction - after she still looked confused and confirmed that confusion by saying 'Oh really?', I said 'picture cutting your hand off, and trying to rebuild it, not easy, right?'. I think that drove the point home.
I often wonder if my breasts will ever be sexual again. I am still in the process of mourning the loss of my first breast, and I will have to mourn my second as well but with the reconstruction will I feel like I just have bumps on my chest that fill the place of the location where my breasts used to be or will they feel like breasts one day? I had breasts for 26 years and so by the time I'm 52, I will have had implants for just as long - will I be used to them by then?
I have been thinking about my first surgery a lot. I think about that scared girl who hugged her mom, dad and mother-in-law before she had to register for her cancer surgery. The hospital was incredible and let Keith come with me as far as almost the OR but I was scared. I was naive and somehow the word 'mastectomy', although knowing it meant the removal of the entire breast, did not have the full impact on me until I saw the flat space on my chest. In the case of my first surgery, ignorance was bliss. This time, I know exactly what I am going in for. I am still a little unsure though, how do I prepare for the physical and mental pain that this will cause having known how painful it was in the past? In the past year or so, I have thought about that scared girl and I have thought about what I would say to her knowing what I know now. Then today, I revert back to that scared girl and I feel no farther ahead. I feel so petrified to go through with this that I have spent most of the day crying.
It's funny because I feel like I have known the right thing to say to so many cancer patients that I have met as a result of my own cancer and I usually feel like I provide some comfort in the things that I say but now that it's my turn, now that I need the pep talk or the right words, I have nothing to say to myself. I am scared, that's all I keep coming up with.
At the pre-op last week, the nurse said, 'Now you've had a mastectomy already?' and once I nodded she said 'because of cancer, correct?'. I nodded again. And then she said generically 'Wow, you're young.' At the time I just nodded, smiled and said my generic 'Yep, and it's not in my family history nor do I have the BRCA gene.' You can tell that I have maybe had this conversation 100 times before. It wasn't until this weekend that I finally thought, you know, maybe a double mastectomy at 28 years old is a little young - ya, I guess it's even a 'Holy shit, she's only 28' kinda young. You just start getting used to it I guess but somehow the word 'double' preceding the word 'mastectomy' takes it up a notch for me.
Somehow I have found strength in the thought that this time, if I want to say 'no' or don't want to go through with the surgery, I can because this one isn't cancer's decision, it's mine. By having a choice this time, I feel a little more in control and that I have a little more power. Knowing that I could just walk away from this calms me down a little and knowing that in order to grow my breasts back, this is the way it has to be done gives me strength.
Even though I have experienced this once before, I just don't know how to get a mastectomy. Luckily, having been born with only two breasts, this is the last time I will have to navigate the experience. The two and a half lines at the start of this entry were about today, in the living room, just Keith and I. I have spent a lot of today crying merely because I don't know how I'm going to go through this again.
...
After being back from India for two weeks, after feeling good about life and living, after feeling a little more fulfilled than before I left and feeling worthy of love, Keith proposed to me. I have been giddy ever since. I am so proud to wear his ring, I am so proud to be his wife someday. I am proud to call him mine.
I haven't tried on a wedding dress yet as I feel like my mastectomy scars will be the spotlight instead of the dress. This prompted a call to my plastic surgeon's office where I had been about five month prior discussing reconstruction options.
So as a refresher, I had a mastectomy in 2011 and at the same time, I had a tissue expander put in as well as having a reduction on my left side to even things out. Once I was fully expanded, the plan was to have the exchange surgery in January of 2012 and 36 hours before my scheduled surgery, my plastic surgeon called saying there was a mix up/ no OR time / he couldn't reschedule me until May / more prolonged cancer garbage. I decided to go back to work in March of 2012 and in August I decided to change plastic surgeons, to someone who I had met and liked immediately and who I knew did great work. I saw her in November and we too had a plan.
During my November appointment, I came to the realization that as long as I had one reduced breast (that I felt like wasn't even my own anymore) and one (partially) reconstructed breast, I would always have one breast that always had cancer in it. They would never be a pair, a set, or a match.
Over the next few months, Keith and I discussed a prophylactic mastectomy on my left side. We weighed the pros and cons and I came to the conclusion that I wanted to get it done. So I called my 'new' plastic surgeon's office in March, once my Indian travels were over, and at that point, I realized that I had fallen through the cracks again. My file had not been dealt with, faxes hadn't been made, calls had not been dialed, I was in limbo again. After expressing my extreme frustration with waiting five months with no resolve, the ball started rolling again.
As a side note, it is extremely difficult to be an advocate for yourself when it comes to reconstruction - let me tell you why. There is an immense sense of vanity that comes along with wanting to have breasts again. I can't imagine that this vanity exists with many other body parts that are reconstructed but because a breast is so closely related to sexuality, it is so incredibly easy to feel vain when trying to regain a part of your body that cancer stole from you.
So, as the ball was rolling again, my plastic surgeon's office advised me to call my oncology surgeon's office to let her know that I wanted the prophylactic mastectomy (which I would like to point out that I wanted in the first place in 2011). I made the call and was left a voicemail in return within a few days explaining that she was not taking on any new patients for prophylactic mastectomies and that I would have to go through my family doctor to get a referral to a new oncology surgeon to do the prophylactic mastectomy. This was all in a voicemail!!!
I called the office back, said that was unacceptable and that I wasn't going to start all over with a brand new surgeon especially because I am not a new patient and that could take years. And then emotion took over and I said 'I am engaged and I refuse to wear a turtleneck wedding dress at my own wedding. I need to move on and without these surgeries, I won't be able to.' The receptionist felt awful (which was not my intention, I just became so emotional) and said she would speak to my oncology surgeon and would get back to me. Within a few days, she got back to me and let me know that she would do the procedure for me.
So, now we are back on track and I presume that surgery will be hopefully by the end of the year until, oh wait, my expander ruptured on May 24th because really, why wouldn't it?? So, in to the plastic surgeon I go and surgery has just become an ASAP situation. Needless to say, surgery is on Tuesday, in about 36 hours, and I am going through a whole whirlwind of emotions.
Because I have wanted a prophylactic mastectomy for two years now and have been told for all 24 months that it is NOT what I want, I feel relieved that it is finally happening however a few realities have set in. Tonight will be my last Sunday night with a real breast and although it has been reduced and it is not the way it was made originally, it is my own tissue and it is mine. I take some comfort in that. Tomorrow will be my last Monday and my last day with my breast and I know that thought will consume my day. How do you prepare for losing a body part and having it be replaced by something that is known in daily conversation as 'fake'?
The other day someone asked how big I was going to go (kind of personal but I am pretty open about it). I told her that it isn't entirely up to me because we have to make sure the skin and muscle stretch to a certain size, your body shape has an impact as well as other factors. Anyway, this woman seemed surprised that it wasn't just as easy as saying 'Double D, please'. I explained to her that this wasn't a breast augmentation but instead a reconstruction - after she still looked confused and confirmed that confusion by saying 'Oh really?', I said 'picture cutting your hand off, and trying to rebuild it, not easy, right?'. I think that drove the point home.
I often wonder if my breasts will ever be sexual again. I am still in the process of mourning the loss of my first breast, and I will have to mourn my second as well but with the reconstruction will I feel like I just have bumps on my chest that fill the place of the location where my breasts used to be or will they feel like breasts one day? I had breasts for 26 years and so by the time I'm 52, I will have had implants for just as long - will I be used to them by then?
I have been thinking about my first surgery a lot. I think about that scared girl who hugged her mom, dad and mother-in-law before she had to register for her cancer surgery. The hospital was incredible and let Keith come with me as far as almost the OR but I was scared. I was naive and somehow the word 'mastectomy', although knowing it meant the removal of the entire breast, did not have the full impact on me until I saw the flat space on my chest. In the case of my first surgery, ignorance was bliss. This time, I know exactly what I am going in for. I am still a little unsure though, how do I prepare for the physical and mental pain that this will cause having known how painful it was in the past? In the past year or so, I have thought about that scared girl and I have thought about what I would say to her knowing what I know now. Then today, I revert back to that scared girl and I feel no farther ahead. I feel so petrified to go through with this that I have spent most of the day crying.
It's funny because I feel like I have known the right thing to say to so many cancer patients that I have met as a result of my own cancer and I usually feel like I provide some comfort in the things that I say but now that it's my turn, now that I need the pep talk or the right words, I have nothing to say to myself. I am scared, that's all I keep coming up with.
At the pre-op last week, the nurse said, 'Now you've had a mastectomy already?' and once I nodded she said 'because of cancer, correct?'. I nodded again. And then she said generically 'Wow, you're young.' At the time I just nodded, smiled and said my generic 'Yep, and it's not in my family history nor do I have the BRCA gene.' You can tell that I have maybe had this conversation 100 times before. It wasn't until this weekend that I finally thought, you know, maybe a double mastectomy at 28 years old is a little young - ya, I guess it's even a 'Holy shit, she's only 28' kinda young. You just start getting used to it I guess but somehow the word 'double' preceding the word 'mastectomy' takes it up a notch for me.
Somehow I have found strength in the thought that this time, if I want to say 'no' or don't want to go through with the surgery, I can because this one isn't cancer's decision, it's mine. By having a choice this time, I feel a little more in control and that I have a little more power. Knowing that I could just walk away from this calms me down a little and knowing that in order to grow my breasts back, this is the way it has to be done gives me strength.
Even though I have experienced this once before, I just don't know how to get a mastectomy. Luckily, having been born with only two breasts, this is the last time I will have to navigate the experience. The two and a half lines at the start of this entry were about today, in the living room, just Keith and I. I have spent a lot of today crying merely because I don't know how I'm going to go through this again.
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