I’m sorry for lying to you

Chances are I lied to you over the past 8 months. Not about having cancer – that would be a seriously horrible (but well played) prank but no, I did not lie to you about that. You likely asked me how I’m doing and I probably said something like I’m doing really well, thanks! It may have been the honest answer because the majority of the time, yes, I felt strong and confident and ready to win but there were many times that I was crying without the ability to stop, that I felt like the cancer had already spread, that I was having a panic attack because I couldn’t see the light at the end of the tunnel or I was lying in bed with no motivation or energy to get up. But it’s harder to say that out loud and that’s when I lied to you. The invisible struggle, side effects and scars that are a result of a traumatic event or fighting a life-threatening disease are often the ones that stay with you and manifest themselves in different ways over time. I was compelled to write about this after being sent a well-written article (thanks, Sean!) that I encourage you all to read:
https://www.theplayerstribune.com/kevin-love-everyone-is-going-through-something/

Before I had a double mastectomy and lost my hair it was so easy to hide. I looked like a normal non-cancer having person so I could pretend I didn’t have it. I may have felt like shit at times but at least I didn’t look sick. It was so much easier to exude the confidence that I did feel a lot of the time. But now I sometimes feel AND look like someone who has cancer so it’s easier to admit that yes, I feel like a ball of garbage today and want to stay in bed. Yes, I’m sad that my boobs got chopped off. Yes, reconstruction is a crappy and uncomfortable process that I’m still undergoing. Yes, I am still sometimes scared. Yes, I have anxiety and questions about life after cancer. Yes, I feel self-conscious and somewhat vain because I miss my hair. But what I’ve learned is THAT’S OK. It’s ok to talk about feeling bad. It’s ok to lean on people when you’re scared. It’s ok to be vulnerable in front of others because chances are someone else feels the same way and will appreciate not feeling alone.

I haven’t even processed all the ways this has changed me yet – and likely won’t until I’m on the other side which is now exactly 5 chemo sessions and 34 days away! But it has certainly had it’s fair share of negative AND positive effects. What I’m trying to do now as I shift to dealing with what my life will be like from now on is how to channel that energy into positive outcomes. How can I carry this fighter mentality with me into life’s next adventures? How can I accept the visible AND invisible scars as cancer souvenirs I’m proud of? More importantly, how can I help others who have to fight this or similar battles? I don’t have all the answers yet but in the meantime, I wanted to apologize for lying to you all. But you have to forgive me because I can still play the cancer card for another month.

T-53 Days – but who’s counting?

I’ve mentally made a switch from feeling like a patient to counting down the days until I can say I’m a breast cancer survivor. Because I had such great results from the trial and surgery I was wondering when I’m actually considered to be cancer free. My doctor let me know they don’t use that term because cancer free is a promise they can’t make right now however, once chemo is over that’s when I can officially say TAKE THAT CANCER – I WON! That glorious, victorious day is April 11 – survivor day. I know I’m getting a little ahead of myself but it’s starting to feel like it’s right around the corner.  I’m like a shark that smells blood in the water about to kill my prey.  But luckily my prey isn’t a cute baby seal… it’s stupid, ugly, not cute cancer.

As a survivor, I’ll still need to undergo some treatments that will help reduce the risk of recurrence. The good news about testing positive for both hormone receptors (meaning my cancer responds to estrogen and progesterone) and the HER2 mutation (which makes my cancer aggressive) is those things can be treated with drugs other than traditional chemo (like my targeted clinical trial). So once chemo is done I’ll begin a daily hormone therapy called Tamoxifen that I’ll take for 5 years and I’ll continue to receive the Herceptin every 3 weeks (to target the HER2) for 9 months. But those will feel like a stroll in the park after chemo.

Like I said, the wicked smart researchers and doctors out there who are saving lives continue to make incredible advancements in finding targeted therapies that will help patients avoid the traditional toxic chemotherapy drugs that I’m currently getting. It’s funny that I now have the least amount of cancer since getting diagnosed in July but I finally look like a cancer patient. Gone are the days of masquerading as a non-cancer haver when I could hide behind my long hair. Even my short haircut didn’t seem like a giveaway but ever since I went G.I. Jane (which quickly changed to more of a baby bird that fell out of a tree – or what my nephew accurately referred to as a hamster) I have felt self-conscious that people think “oh there’s the girl with cancer” (G.I. Jane pic attached). I’m not upset or angry – I almost feel like it’s a rite of passagethat I’m finally taking part in and feel more closely bonded with those who have gone through this. But it really makes me think about what chemo does to your healthy cells. I don’t look sick because I have cancer, I look sick because I have toxic chemicals flowing through my veins. I already felt invested in research to find more targeted therapies after my trial but now, more than ever, I feel it’s so critical to finding cures and allowing people to beat cancer and live a fully, healthy life during and after treatment. So whenever you get the opportunity, I encourage you to support research efforts like those at Dana Farber.  The Pan Mass Challenge and the Boston Marathon are both major fundraising events and I can happily point you in the direction of those participating if you’re interested just let me know!   I’m constantly in awe of the things Dana Farber and others have managed to do to treat and cure stupid, stupid cancers like breast cancer – the cancer that in 53 days I can say I officially gave a royal beat down to and won.

Bye, Hair!

I’m officially 1/4 of the way through chemo – 3 down 9 to go!  So far they remain fairly uneventful except for when they get me Benadryl drunk and I get kinda loopy and my low talker voice is even harder to hear.  The fact that treatments are weekly – as opposed to every 3 weeks – helps me with my obsessive need to check boxes off my to do list and it seems like chemo will be just a memory soon.

And so far I still feel really good – I haven’t had too many side effects.  Except for one that kicked in last night.  An alien hatched inside of me then ripped itself out of my chest… psych nah that was just a movie.  But now I definitely don’t think you’ll mind me telling you about the official start of Shedfest 2018 – aka my hair started falling out by the handful.  The amount that’s come out so far is probably comparable to the remnants of shearing my cousin’s horse-sized German Shepherd.  I happen to have A LOT of hair though so you can’t visibly notice yet (unless you look in my sink or trash can but I hope none of you are doing that other than my mom who I made look at it then she wouldn’t stop pulling hair out of my head, her arms moving like it was a whack-a-mole game).

While the untrained eye can’t tell at the moment, I don’t want it to continue falling out, covering my floor like a shag rug, so tomorrow I’m going full G.I. Jane shaved head.   I was a little upset at first to see the first clump of hair fall sadly into the sink but I knew this was coming and as my friend said, every hair that falls out is another potential cancer cell that’s gone so I’m more than ok with that!  It’s just a temporary new cancer killing me.  Bald is beautiful they say…. usually to men but I’ll take it for now.

1 down, 11 to go!

My first chemo session is checked off the list! It’s funny how nerves can create insane scenarios in your head that never happen. I’ve had two of the drugs during my clinical trial (Herceptin and Pertuzumab) but never Taxol – the big, bad, scary chemo. So I kept thinking my nurse would start the infusion and I’d puke on her feet or my hair was going to fall out onto my lap or I’d turn green all over like Shrek…….. what? Those were not even potential side effects but I all of a sudden got really nervous about this new chemical being introduced into my body. Turns out, none of those things happened and the entire day went smoothly.

It was a long 8-hour day starting with blood work and a check-in with some of my oncology team, including a great big hug from my nurse practitioner who I haven’t seen since before my surgery. She was still celebrating the news of a complete pathological response and telling me how excited the team was when they got the news. The immense joy I felt receiving the news originally came flooding back and I couldn’t stop smiling. I was then greeted by my treatment nurse from my trial and I was so excited to see a familiar face in that room. It’s comforting to have so many people be a consistent part of my care team. The best part is they’re all SO nice ALL the time. It never feels like they’re just doing their job – they actually care about my well-being and they’re in my corner. So the day was fairly uneventful as was to be expected – I had my IV in, got comfortable (this time they gave me a bed since the treatment was scheduled for 5 1/2 hours), got the rundown of what was to come, ate some lunch and mostly sat back and relaxed.

What I didn’t realize originally, and what I learned from the trial, is they don’t mix all your drugs up like a cocktail and administer them all at once. They go one at a time with breaks in between to observe you and make sure you don’t have any negative reactions, which can make for a very long treatment time if you have multiple drugs like I did yesterday. And for this session, I got “loading doses”, meaning they loaded me up with heavy doses to jump start it all.  They started the treatment with the drugs I had already gotten in the trial – Herceptin and Pertuzumab. I actually took a nap during those infusions that’s how uneventful it was and how used to those drugs I felt (thank goodness for the bed they put me in!). Before giving me the Taxol I needed some pre-medication to combat potential allergic reactions, which included two anti-histamines and a steroid. That’s when the silly nerves crept in… if they need to give me all of these pre-meds something terrible is going to happen! I’m going to pee the bed and start clucking like a chicken! But as soon as she started the Taxol I knew it was going to be fine. I didn’t have any reactions at all and was pretty sleepy from the Benadryl so I started to doze off again. It made for a long day but as I suspected because I’m in such great hands, it went very smoothly. And the biggest, longest treatment is already behind me – smooth sailing from here on out…. except for those sneaky side effects that will creep in as I go.

The difference between Herceptin/Pertuzumab and Taxol is that the first two are targeted therapies. They are actually able to specifically target the HER2 mutation (remember that’s the mutation that makes the cancer cells grow and divide more quickly and we hate it) and attack those cells that in turn kill the cancer cells. So they, for the most part, leave the rest of your body alone, which is why it’s considered to be a much less toxic treatment and what they hope to be the sole treatment for HER2 positive patients moving forward (and why I’m so happy I completed the clinical trial to aid in that future for others). Traditional chemo drugs, like Taxol, cannot differentiate between cancer cells and healthy cells – they attack any rapidly growing cells which not only include active cancer cells but also healthy cells like hair, skin, etc. That is why I will have more intense side effects as I go but for now I actually feel fine. I’m starting to get a bit of the aches from the loading dose that I felt during the trial but that goes away quickly. What will start to creep in and intensify is the hair loss, nausea, fatigue, appetite, taste and smell changes, dry skin, etc. All the fun stuff! But hey, it’s a small price to pay to put this behind me. 1 down, 11 to go… onward!

Tomorrow! Tomorrow! Chemo… Tomorrow! -Annie?

Who knew one day I’d be thinking “man, I’m pretty excited for chemo to start”. Maybe excited isn’t the right word but I am looking forward to it being more regular and predictable than most of December and January was.

December was full of anxiety, fear and my mind spinning with terrible thoughts while I waited for results or decisions about surgery. I didn’t even know what type of surgery I’d be having until a couple of weeks in advance.  I had a hard time accepting the outcome of a double mastectomy.  I struggled with pain and sadness in the hospital for the two days post-surgery and it was a major adjustment (still is) to find positions that I’m comfortable in and clothes that look semi-normal on me. I dealt with the loss of a physical piece of myself – it took me a while not to cry when I looked at myself in the mirror.

January was full of follow up appointments, more testing and another minor surgery.  Juggling appointments and getting back and forth to them was chaotic and tiring all while trying to heal from major surgery.  But January also brought lots of kick ass news about the post-surgery results and I now know chemo will be every Wednesday for 12 weeks; on a regular schedule just the way I like it.  So now chemo really does feel like the final face punch to cancer. It’s like in Mortal Kombat when you “FINISH HIM” to violently murder your opponent.

Don’t get me wrong – I am NOT in any way looking forward to the side effects. My doctor told me I’ll definitely feel them more intensely than the last treatment and you know I’m gonna lose my hair.  But I’m already used to my hair being mostly gone and I’m not really nervous about being bald. It’s the same way I now think about the new boob situation (or lack thereof) that I have going on – if this is what a cancer-free-me looks and feels like then I’m ok with it.  Because it will get better because I’m BEATING YOU CANCER. I’ll get new boobs eventually and my hair will grow back.  Then the gifts will stop and no one will read my blog anymore and… oh I mean, it will be awesome!

So I am, in fact, looking forward to the next 12 Wednesday chemo sessions. Anyone who knows me, knows I love making and completing a good checklist (looking at you, Sean!) and this is another box I get to check which feels awesome and badass and the sooner I get started the sooner I’m done.

Kindness Part II

So you know when people come into your life and you think to yourself, yes I want to hang with them all the time because they make me feel cooler? For me, two of the best examples of that are Nan and Josh Patriquin; two beautiful (inside and out) humans who are not only the most fun to hang out with but they’re so incredibly admirable because they’ve both selflessly dedicated their lives to service and helping others.

Nan “Shenaningans” and I couldn’t be more opposite on the surface – she’s a tall, leggy, straight-haired blonde who isn’t afraid to be alone in front of a crowd singing at the top of her lungs, runs like a gazelle and is incredibly creative and artistic. But somehow she and I can have fun together in ANY situation (while sometimes wearing matching shirts).  She’s the first person I call when I want random mimosas on a <insert any day here> morning/afternoon/evening because she’s always game for having a laugh, a good talk and a general good time. Nan has dedicated her time and talents to numerous causes including, but not limited to, being a Touch Your Boobs team member for the Jimmy Fund Walk, serving many years with City Year (where we met), running the Boston Marathon for charity, and now working as an expressive arts therapist at the Boston Youth Sanctuary.  She’s constantly serving others and makes it seem so effortless and fun.

If I had to pick another person in the world that I’m happy Nan met other than me, it’s her husband, Josh.  Josh and I are seemingly more similar because if there’s a crowded event you’re likely to find us chit chatting in a corner while Nan is in her most natural state – singing on stage with a random band.  While they seem slightly different on the surface, I believe part of what brought them together as a super couple is their innate kindness and selfless natures. Josh served 8 years in the U.S. Marine Corps including two overseas deployments before becoming a Boston firefighter. Not only does his professional life revolve around risking his life to save others, he’s now using his personal time and energy to raise money and awareness for Dana Farber Cancer Institute.  Hence the point of this post about kindness.

Josh let me know he’s riding the Pan Mass Challenge this year with yours truly as one of his inspirations for doing so, along with a beautiful little girl named Ava who is also being treated at Dana Farber.  It is so humbling that someone I admire as much as Josh is, in part, using my story as a platform for his efforts.  So I wrote this post to not just talk about my friends who make me feel cooler but to remind people of the power of kindness.  Kindness manifests itself in so many ways – phone calls, awesome socks, dammit dolls from people I haven’t met yet, flowers, candles, cards, baskets of lotions, tea and eye masks, a random bottle of champagne, books, getting contacted by friends I haven’t talked to in years – the list is endless and amazing.  Josh’s kindness, and the kindness of everyone who has supported me every step of the way, is touching and inspiring and will ultimately help to save lives.  I want to pay it back (and forward?) by encouraging everyone to join me in supporting Josh’s Pan Mass Challenge efforts.  Please visit (and spread the word of) Josh’s fundraising page here:
http://profile.pmc.org/JP0445

THANK YOU ALL.

 

“I am the warrior” – Patty Smyth circa 1980-something

To say the past 6 months has been a rollercoaster (emotionally and physically) would be a gross understatement.  I’ve felt anxious, scared shitless, grateful, frustrated, hopeful and confused.  I’ve completed a clinical trial, cut my hair off and underwent a double mastectomy.  I’ve felt each and every emotion very acutely and I’ve been in physical pain and discomfort.  I’ve cried many tears of sadness but the best feeling was crying tears of joy today when my medical oncologist confirmed that my lymph nodes show no signs of cancer at all.  I finally got the news I’ve been waiting for and it’s an emotion that’s really hard to describe – intense relief, gratitude and joy – a weight has finally been lifted.  It sounds dramatic to say (whatever, now’s my time to shine as a drama queen) but my sense of hope has been renewed and I see the light at the end of the tunnel for the first time.  Not only were the lymph nodes clean, there was no sign of invasive cancer in the tissue AT ALL.  What was left was a “battlefield” – an actual footprint of where the invasive cancer was.  It’s the best result possible – what they call a complete pathological response.  And the left breast tissue was completely benign.  What they did find is Ductal Carcinoma In Situ – abnormal cells that are not invasive (aka they hadn’t left the duct) but that was to be expected since my treatment did not target those cells.  This is all incredible news not just for me, but for HER2 positive patients in the future who will get the same amazing results and avoid traditional toxic chemotherapy thanks to the research and trials at Dana Farber.  My doctor’s faces were beaming, they hugged me and told me they’re proud of me but really, I’m proud of them.  Their work and dedication is life saving and I’m so thankful for them.

I have said it – and believed it – in the past but now the reality that I’m actually beating cancer feels so certain and so close that I’m now flooded with emotional and physical strength to finish this fight with a chemo TKO.  Chemo begins weekly for 12 weeks on January 24.  The treatment is a combination of Herceptin and Pertuzumab (similar mix of drugs from the trial) as well as Taxol (a more traditional chemotherapy drug and the reason why I’ll have yet another thing in common with George Costanza soon – shrinkage and now hair loss) to ensure no cells that escaped or could possibly be left behind will survive.  After the 12 weeks of chemo I’ll continue to get the Herceptin every 3 weeks for 9 months, which will greatly decrease the risk of recurrence.  So while there’s still a year of treatment waiting for me and I’ll be bald soon (no you cannot rub or palm my head – ok maybe but only if you give me a present first) I have never felt stronger or better.  I am overwhelmed with happiness and gratitude – and a little champagne right now – that nothing can get me down.  I finally feel like a cancer beating warrior.  BYE CANCER!  Go fuck yaself!

Confessions of a Friend of a Cancer Haver – by Kellie Hinkle

This is a guest post. If you hate it, don’t blame Kristen.

Over the past six months, I’ve learned a couple of things about being a friend and supporting a cancer haver*. (Cancer haver is what I jokingly called Kristen pre-treatment, since she wasn’t technically a patient, yet).

I don’t touch my boobs enough. (And if I’m totally honest, no one else is touching my boobs enough, either.)

I’ve never really been one for breast self-exams. Or going to the doctor. Or just about anything that means being a responsible adult who is mindful of their health and wellbeing. I’m not sure why other than general laziness, but Kristen’s diagnosis has served as a reminder that youth doesn’t translate to health. Though I suppose some might argue that I’m past the age where youth can be applied to me, which is all the more reason to get my butt in gear and start taking care of myself, and my boobs, better.

I don’t know what I’m doing – what if I mess up?

Here’s the thing – there’s no one “right” way to support someone battling cancer though there are some things you should try to avoid doing. (Should I have even used the word battling there? Is that somehow demeaning or maybe too aggressive? Should I have just kept it simple and used “with” instead? I honestly don’t know and legitimately changed that wording multiple times.)

As a support system for someone with cancer, you’re going to mess up at some point. You’ll say the wrong thing, you’ll forget to ask them about an appointment they had, you’ll struggle to generate the appropriate level of enthusiasm for an exercise-focused fundraiser, etc. That’s okay.

People are different – they’re unique snowflakes who all deal with challenges in different ways and because of that, there’s no right way to support a cancer haver. There are common things that are generally better than others (offering specific support rather than asking “how can I help?” because the latter means that the haver has to take responsibility for figuring out your role for you), but it’s important to remember that your friend/co-worker/loved one is still the same person you know and that tells you a lot about how to be there for them. So for Kristen I’ve made a lot of jokes but also used this as an opportunity to make sure she knows how much I love her and am thankful for her friendship, because, while I’m sure she technically knows that, my natural tendency is not to vocalize it.

And if all else fails, just be there. Be there in person, be there on the phone, be there via text. Illness can freeze us because we feel like we don’t know what to do or say because we haven’t been through it ourselves or don’t know exactly what they’re feeling. That doesn’t really matter – just show up for them. Show up for them and openly recognize what they’re going through, even if you don’t fully understand it. Ask them how they are and how they’re feeling. Ask questions about their diagnosis and treatment, but be open to being shut down if they don’t want to talk about their treatment or are just tired for a few minutes of remembering that their life has been turned upside down.

So maybe you might say the wrong thing once in a while. So what? That’s better than being nonexistent for someone who cares about you when they may need you more than ever.

Kindness

I initially started this post by writing out a list of things I won’t miss from 2017 – I am grateful for all last year brought to me but believe me when I say buh-byeeeeeee 2017 I hate you the most!  Then I re-read it and thought, good lord no one wants to hear how much I won’t miss post-surgical tubes coming out of my armpits.  Well, I guess you heard about it anyway so let’s move on to a more positive tone.  I then started writing about things I’m looking forward to in 2018 but that list was really short and kinda obvious – I look forward to not having stupid cancer.  Then I got a phone call from the Jimmy Fund letting me know an anonymous donor bought $500 worth of Touch Your Boobs shirts to support my fundraising efforts in support of Dana Farber and I was so touched and inspired I decided to write about kindness.

Kindness is heart-warming and inspiring and the best part is, a little goes a long way. I’ve been the recipient of so many acts of kindness recently I wanted to share that joy.  I’m unable to list out all of the countless cards, gifts, phone calls, text messages, etc. (some from people I’ve never even met!) that I’ve gotten but every little thing is greatly appreciated.  I feel kindness so deeply these days that it continues to renew my feeling of gratitude and positivity, the value of which is immeasurable as I go through this journey.  I can’t wait to pay it forward.  For now, I want to highlight two of the more surprising and random acts of kindness I’ve experienced.

The first arrived in the mail not long after I started treatment.  My dear friend Lauren had introduced me to a company called The Bombchel Factory (https://www.shopbombchel.com/) – a unique and mission-oriented clothing company in Liberia that teaches an all-woman staff of Ebola survivors, rape victims and the deaf to be self-sufficient through skill-training and education. These incredible women make beautiful clothing and accessories using bold African prints and I got hooked on their stuff quickly.  Two skirts, two dresses and a pair of earrings later I’m officially obsessed. And it feels good to contribute to a company like Bombchel that really walks the walk.  They’ve improved the lives of women in Liberia and all of a sudden, I became a beneficiary of their work when I opened the mail one day to find a beautiful quilt made of their eye-catching fabrics to support me and my fight against cancer.  It was so incredibly touching – I’ve never met the CEO and founder, Archel Bernard, but she was one of the early highlights of my random acts of kindness experience and I’m so grateful to her and her work.

The next completely random act of kindness occurred about a month ago when I went to order some custom wine glasses from a shop on Etsy called First Class Vinyl (https://www.etsy.com/shop/FirstClassVinyl).  I contacted the shop owner, Kinsey, for “fuck cancer” wine glasses for my friends and I – sorry not sorry for the language – I really do hate cancer it deserves the F word and worse.  We went back and forth about what I’d like done and when the final product was ready she let me know they had shipped!  I was so thrilled to get them and when I asked what the final bill was she wrote back saying “It’s a gift! I’ve had my heart set on it since you first messaged me!”.  It’s hard to express such appreciation for a gift from someone you’ve never met and I don’t feel like I’ve truly thanked her enough but it was such a touching gesture I’ll never forget it.

Lastly, to the person who bought the Touch Your Boobs shirts and would like to remain anonymous; I don’t know who you are but I appreciate you and I am inspired by you.  All of the acts of kindness that have been done by my family and friends and strangers alike have impacted me more than you know and I will carry that with me beyond this crappy cancer journey.  It will fuel my ability to keep fighting, it will give me perspective when something little and meaningless is getting to me and more importantly, it will inspire me to do the same for others.  Cheers to you, cheers to kindness, cheers to 2018.

So long, 2017!

It’s almost a new year… I’m really looking forward to a 2018 that’s filled with good news and new boobs.  As you all know I had a double mastectomy on Friday and I haven’t had much to say since then as I’ve been in a drug-induced fog but I wanted to update everyone quickly.  The surgery was very successful – basically, it was the best 8 hour nap of my life.  My doctors said it went very smoothly, that I’m already healing well and most importantly, the initial testing indicates the lymph nodes are CLEAN!  Now, as much as I want to jump up and down on my bed and scream it at the top of my lungs, that is not the final pathology report – the tissue needs to be sent off for official testing.  So I’m not getting my hopes up completely, but that’s a really good sign and I was relieved to hear them say those words.  It gets me a little choked up each time I think about that hurdle being over with.  This was the hardest, scariest, bumpiest part of this entire journey – frankly, of my entire life.  It isn’t totally over since I’m still waiting for the final pathology report and reconstruction is an on-going process but I’m moving towards a cancer-free me and it feels really good.   There’s nothing much for me to do until the new year but rest and heal so that’s what I’ll be doing.   Happy new year – much love and gratitude to everyone.