FINALLY.

While I finished “active” cancer treatment back in April when I finished chemo, as of today I’m FINALLY done with IV infusions!  I continued to get Herceptin every 3 weeks to help prevent recurrence, a drug that specifically targets the HER2 mutation I had. As Clark Griswold would say, “Hallelujah holy shit, where’s the tylenol?”.  Just a little recap of what’s gone down since I got diagnosed:

1 billion – what feels like the number of appointments, heart tests, blood tests, MRIs, ultrasounds, biopsies, and mammograms I’ve had
526 – days since diagnosis
$20,417 – dollars raised for Dana Farber through the Jimmy Fund Walk and Touch Your Boobs gear (a big friggin’ THANK YOU to all of you for that)
31 – IV infusion treatments
6 – cancer killing drugs that have been introduced to my system
4 – surgeries and procedures
2 – new boobs that aren’t murderous assholes
1 – grateful breast cancer survivor

The good news about just getting Herceptin without the traditional chemo from April until now is that it’s much lower on side effects.  My hair is growing in fast and furious, my appetite is back in full effect and I’ve felt normal for the most part.  Though I guess normal is a relative term.  Did I really feel normal?  Or did I just not feel like the rotting ball of garbage I was before?  It’s hard to tell.

I will continue on hormone therapy for at least 5 years to make sure my body doesn’t produce estrogen since my cancer responded to it (what they call hormone receptor positive).  This is another measure to help prevent recurrence.  So I’m on a daily pill and a monthly injection in the butt cheek to keep me in a medically induced, temporary state of menopause.   Like Herceptin, the side effects are pretty low but I do get all the fun things you would naturally get with menopause including hot flashes and night sweats.  If you see me randomly fanning myself and breathing like I’m in a sauna, you’ll now know why.

So farewell 2018.  You weren’t as bad as 2017 but you still sucked a little.  Bring it on 2019 – I hope you’re the year that I remember as being full of fresh starts and new beginnings.  I think those are the same thing but whatever I couldn’t think of anything else.  Happy new year to you all!  Sending lots of love and gratitude to you all for getting me through a very bumpy year and a half.

Merry Christmastectomy!

December 22 will forever be Christmastectomy to me.  It is a day of remembrance… a new holiday that I’ve decided to celebrate instead of forget.  Last year it meant fear, sadness and pain.  But this year, and future years to come, it means hope, strength and happiness.

With that in mind, I wanted to share something I recently posted on Instagram.  Kintsugi is the Japanese art of fixing broken pottery.  This method revitalizes the old piece with new life, celebrating it’s unique history and making it more beautiful than the original.  I decided to apply this method to a gift I recently received and promptly broke like a bonehead.  I was so upset as I pulled it out of the gift bag and watched it fall to the ground in pieces.  Instead of throwing it away, I used a homemade version of Kintsugi to emphasize the cracks, see the beauty in its flaws and highlight its new-found uniqueness.

The process of putting the gift back together (like a 2nd grade arts and crafts project) made me think of my mastectomy and the process of healing.  I remember when I first looked at myself in the mirror about a week after surgery and couldn’t stop crying.  How could I ever be ok with these cracks, these flaws, this broken version of me?  It took a long time but I started to heal and I finished reconstruction – I began to see how my scars represented strength and beauty, not imperfection. They now have a history and uniqueness that I can celebrate and embrace.  So Merry Christmastectomy to all and to all a good night!  I hope you are all focused on hope, strength and happiness on this very special holiday.

YOUR Boobs

Most of my recent posts have been about my boobs… time to focus on YOUR boobs.  Mine are just fine, in case you were wondering though.  I’m still happy with the results of reconstruction and continue to get Herceptin treatments every 3 weeks – a HER2 targeted therapy to help prevent recurrence – as well as daily Tamoxifen pills and a monthly Lupron injection – hormone therapies to keep my estrogen levels as low as possible.  Anyway, I said this post wasn’t going to be about me.  Back to your boobs….
1 in 8 women in the U.S. will be diagnosed with invasive breast cancer and 40% of diagnosed breast cancers are detected by women who feel a lump.  And while it is much less common, men can also develop breast cancer – so I’m talking to you too fellas!  The good news it that survival rates for breast cancer have increased over the past few decades as a result of finding breast cancer earlier through screening and increased awareness, as well as better treatments.  So here are some helpful hints of things you can do for yourself and others for early detection:
1) Touch your boobs
I feel like you saw that one coming… but for real, you should make self-exams a monthly habit.  Set a reminder on your phone or incorporate it into another monthly routine you already have like grocery shopping… does anyone else hate the grocery store as much as I do?  Ok, maybe something more like changing your Brita filter or whatever.  Either way, make it a habit.  Here’s a simple explanation of how to do a self-exam:

-Use the pads of your fingers – not the tips or the palm – basically the part of your fingers you use to snap
-Gently move your fingers in small circles all the way around your breast starting at the armpit all the way to the nipple
-Look for changes on the skin, feel for lumps and check for any discharge or pain
-Check both laying down and standing up

2) Badger your friends and family
Listen… we don’t live in the days of mail carrier pigeons.  You can eeeaaasily send a text or an email or a million other things I don’t even know about to your friends and family to badger them like I badger you.  Just e-yell “TOUCH YOUR BOOBS” at some people you care about every now and again.  As awkward as it sounds, you could help save someone’s life.
3) Be your own advocate
If you think you notice something that’s concerning, ask your doctor.  Don’t be afraid to advocate for yourself.  My doctor said I could schedule a mammogram if I want.  I had to take the initiative but almost didn’t because it was “probably just a cyst” and they’d think I was crazy.  I wasn’t.  And you aren’t either.  You know your body best, especially if you touch your boobs regularly.
4) Talk about or schedule a mammogram
Talk to your doctor about your family history and risk factors – this will determine the age at which you should start getting mammograms (if you haven’t already). While they don’t feel the same as say, a Swedish massage, the small amount of discomfort can provide a crap ton of reassurance and potentially early detection.
So that covers early detection.  I mentioned the other thing that has improved survival rates is better treatments for patients.  Here’s my plug to support the Touch Your Boobs Jimmy Fund Walk team!  It’s thanks to Dana Farber’s incredible research, treatments and care that I can walk this year as a cancer survivor.  The best way I know how to show my gratitude is helping to raise funds and awareness.  I set an ambitious goal of raising $7,500 and many of you have already contributed – THANK YOU!  To continue supporting Dana Farber and their quest to kick cancer’s ass (I think that’s their official mission statement), please consider donating by clicking here, checking with your company to see if they match contributions and by spreading the word.   I appreciate you all so much for all the ways you’ve shown support.  You really are the breast… I mean best.

Happy Cancerversary To Me!

One year ago today I heard the words “it’s cancer”.   I won’t bore you with a recap of everything that’s gone down since then but when I look back and think about it, it’s been one hell of a year.  I look different – I have a buzz cut and new boobs.  I feel different – I definitely get tired more easily but I’ve also been getting myself to the gym with a personal trainer since getting diagnosed so I’m in better shape.  I think differently – I’m much more conscious of my health and I’m always looking for the more positive outlook in situations.  So while a lot has changed, one thing has remained the same – I hated cancer then and I hate it now. I feel like I could be a lot more reflective on my cancerversary and come up with some deeper thoughts but really, what’s more meaningful than saying “cancer, you suck!”?

I hated cancer a year ago because it’s effected people I love so deeply.  It’s caused pain, fear, anxiety and it’s taken friends and family members away.  I hate it now because it took a year of my life, threw it into a blender and dumped it into the trash.  I do know there are a lot of positives that have come out of this year however, I’m not giving cancer the satisfaction of pointing any of them out while I’m talking about hating it so much.  Cancer… what a jerk.

Speaking of hating cancer, I’m excited to participate in my second Jimmy Fund Walk to support the cutting edge research and incredible patient care at Dana Farber Cancer Institute.   After this long, scary, bumpy year-long road, I’m more determined than ever to focus on the positives and be an advocate by encouraging other women to do self-exams for early detection, providing support for others through their journey and most importantly, helping to raise money for Dana Farber’s research and patient care.
Please consider helping me reach my ambitious goal of raising $7,500.   Ways to support include:
-donating by clicking here (no amount is too small – or too big for that matter!)
-spreading the word by sending my fundraising page to others (everyone hates cancer, right?!)
-asking your company to match donations (companies hate cancer too!)
I will forever be grateful to be a breast cancer survivor thanks to Dana Farber and to you, my friends and family, for your amazing support.  I couldn’t have made it through this past year without you.  THANK YOU!

I’m a real boy!

I haven’t written in a while because after recovering from surgery things were pretty uneventful.  As uneventful as post-major surgery goes I guess.   But I do have a few updates to share in this blog so I’m going to keep them all as concise as possible.  Before I begin, some people have asked if I plan to continue this blog.  I initially thought of taking it down, moving on with my life and not looking back.  As you’ll see in my last update, that is no longer the case…
1) I love my new boobs.  I can’t quite tell if that’s because the tissue expanders were so horrible that I would have loved anything as long as they weren’t accidentally sewn onto my back but either way, I’m 5 weeks out from surgery and I’m very happy with the results.  In just 1 more week I can even sleep on my stomach for the first time since December!  I’m going to wake up the next morning feeling like Pinocchio when he discovers he isn’t a puppet anymore.
2) Herceptin isn’t so bad.  I still get Herceptin infusions every 3 weeks to help reduce the risk of recurrence and so far I feel really good.  My energy level is coming back, as is my hair, and I don’t have any weird food aversions.  Similar to the tissue expanders, I wonder a little bit if chemo was so traumatizing that anything injected into my veins other than that would be a pleasant experience but I’m not going to question it.  I’m just thankful I have eyebrows and eyelashes again.  As my mom said,  I’m less “Mr. Potato Head” and more “G.I. Jane” these days.  I’ll take it.
3) This one is a little trickier to summarize but it’s this… I realized that one of my greatest fears is also one of my greatest hopes.  I never, ever want my loved ones to get diagnosed with cancer, to experience the pain, anxiety or general struggle of a diagnosis and associated treatments and side effects. On the flipside, my hope is that my friends and family are advocates for themselves and others in order to catch a diagnosis early enough where it’s treatable and curable.  It’s the entire reason why I started this blog – so that someone will do a self-exam when they may not have thought to previously or that they might have a conversation with their doctor they were once afraid to have.  Fortunately and unfortunately, I got a phone call this morning from a very dear friend who let me know she got her first mammogram, in part because of reading the blog, and she was diagnosed with early stage breast cancer.  My heart sank but when I heard her say “thank you” I had chills and got choked up because she caught it early and she is going to do great with her treatment.  I am really grateful to know that the discomfort I sometimes feel when I share so much private and sensitive information is 1000% worth it because my friend is going to kick cancer’s ass as well.  In the 10+ years I’ve known her she’s shown me that she’s a true fighter while always being graceful and humble – and this is one more thing about her that I admire so greatly.
With that, I am definitely going to continue writing updates and badgering people about touching their boobs.  Just when you thought you were going to stop seeing emails about boobs show up in your inbox…. you’re not safe.

Yes they’re fake, my real ones tried to kill me

As I prepare for my reconstruction surgery on Tuesday, I’m finally ready to open up and provide some more information about my mastectomy and the reconstruction process. It’s a much more sensitive and difficult topic to discuss not only because it’s the most painful and permanent part of the cancer/treatment but it also feels much more personal. I mean, it’s my actual breasts I’m talking about (both old and new) as opposed to a more abstract-feeling concept like cancer cells.  But I’m committed to being as open and candid about this entire process as possible.  So to help me tackle this issue I’ve asked my “friend of a cancer haver” and now second time guest blogger, Kellie, to help me out with a Q&A session.

Before I begin with the Q&A I’d like to make a quick but profound statement about mastectomies in general. THEY SUCK. Ok, now onto the Q&A.

Q: Is your reconstruction basically like getting plastic surgery?

A: I referenced above that mastectomies suck. That’s because they’re less like a free boob job and more like a traumatic (both physically and emotionally) amputation with a slow, painful rebuilding process. It also comes with some permanent side effects like numbness, scars, the inability to breast feed, etc. I’d like to also point out that reconstruction is a choice. Some women opt to remain flat without rebuilding the breast at all and I applaud those women. I applaud their strength to say screw it, I don’t need you new boobs! It’s a very personal choice and I admire each and every woman who has gone through this process with or without reconstruction. So I’d say, no it’s nothing like getting plastic surgery. As you read on, I think you’ll agree with me.

Q: What’s the difference between your old boobs and the ones you’ll have after your reconstruction?

A: Well that’s easy, my new boobs won’t try to kill me like my old ones did.

Q: Is it out of line to ask if i can touch them?

There’s a long and a short answer here. I’ll start with the short – yes, it’s out of line. And the longer answer – hell yes it’s SO out of line and ridiculous to think it would be ok. It would be as pleasant and appropriate as touching someone’s eyeball. This applies to everyone and not just you, Kellie.

Q: Was there anything you had to do to prepare for the reconstruction?

A: Aside from logistical preparations, it’s all mental. Before my mastectomy I was petrified. I’ll never forget walking into the hospital holding back tears almost unable to speak to the woman checking me in. But I kept reminding myself that so many women before me have made it through this and that I’ll wake up and be closer to the cancer-free me that I want. The mental preparation for my reconstruction surgery is more like my brain yelling HELL YES! This surgery is definitely a more positive milestone. As far as the logistical preparations, there are some key items I bought to help with recovery that I highly recommend to anyone undergoing this kind of surgery – not just mastectomies but anything involving your upper body (like my brother having neck surgery recently – OUCH)….
1) Wedge pillow – this was completely necessary because being flat on my back was impossible for weeks. The pressure of lying back was too painful but also, I was unable to use the muscles required to sit back up again. So this was a MUST.
2) Neck pillow – this helped keep me in a comfortable position even after I graduated from the wedge pillow.
3) Heating pads – after surgery it was almost impossible to unhunch my shoulders because I was trying to protect my newly amputated chest as well as not disturb the surgical drain tubes coming out of my armpits. Because of all that, as well as the awkward sleeping positions, I needed to relax my muscles with heating pads occasionally and it felt like a plug-in masseuse for my back.
4) Button down shirts – putting a shirt over my head took a couple of weeks so having button down shirts for sleeping and going out in public was life saving.
5) Tumbler with straw – I couldn’t lift drinks all the way up or move my upper body much at all so having a straw was awesome! At times I wished it were filled with wine or margaritas but alas, it works even for water to wash down pain killers.

Q: Do you/will you have nipples?

A: This question is really interesting to me because it’s the one thing people (including myself at first) are most surprised by. And the answer is this, I’m not telling you. What I will tell you is that some women are able to keep their nipples while some women are not – all depending on the tumor’s location and size as well as how aggressive it is. In general, women with “big bad” tumors are not candidates for keeping their nipples. When women do have their nipples removed, the 4-6 inch incisions span across the entire front of the breast as opposed to it being in a discreet, under-the-breast location. The good news is for women left with these drastic cosmetic changes, there are now a lot of great options that provide the realistic look of a nipple including reconstruction using your own skin or 3D tattoos. However, the nipples will never functionally be the same and for that reason, I don’t think I’ll be opting for either option. I’ll likely get a more artistic, bad ass tattoo to cover the scars. I guess I just answered the question. Moving along…

Q: How long is the surgery and what does it consist of?

A: My mastectomy surgery in December was 8 hours long. That included 6 hours to remove all of the breast tissue, which is more than you might think because breast tissue spans from armpit to armpit to almost up to your collar bone.  Some women who are not undergoing any additional treatment (radiation/chemo) may be able to have immediate reconstruction at the same time but that was not the case for me. The remaining 2 hours were spent inserting tissue expanders underneath the muscle, which are essentially very hard, plastic, deflated implants. They then glued my approximately 5-inch incisions back up (yup no stitches or bandages – just glue holding me together like a model airplane).

Over the past 4 months I’ve had the tissue expanders gradually filled with a saline solution through a needle inserted through the skin into the expander. This causes the expander to push the muscle and skin out to make room for the permanent implant – hence the term expander.

Now that I’m finished with chemo and the expanders are filled up, the final reconstruction surgery will be a quick 1-hour procedure to remove the tissue expander and put in the permanent implant, which is no different from the implant one would receive with an elective, cosmetic breast augmentation.

Q: How long will it take to recover?

A: After my mastectomy I spent 2 days in the hospital with a cocktail of morphine and oxycodone pain killers. Morphine sounds extreme, doesn’t it? But let me tell you, it was necessary. I’ve never been in that much pain in my entire life. As the anesthesia and numbing nerve-blockers wore off I started to actually shiver, convulse and cry in pain. The good news is once the pain did start to subside I saw major improvements each day. I also had to deal with limited range of motion in my arms and scar tissue, which required physical therapy. It took months in order to do any physical activity requiring my arms or chest muscles. Recovery after my reconstruction surgery will be a lot less painful and traumatic than the mastectomy – in fact I’m told I’ll have immediate relief from not having the tissue expanders anymore and I’ll be able to return to normal activities in about 4 weeks.

Q: Do you have to wear a bra after your reconstruction and/or have you missed wearing a bra?

A: Nope! I mean, I’m sure I’ll have to wear them for aesthetic purposes once in a while but not for functional reasons. I always knew I was a flower child at heart but now it’s confirmed – ban the bra! It’s as liberating as not having any hair to deal with.

This ends our mastectomy/reconstruction Q&A session! Thank you, Kellie, for your insightful questions. The answers and information here is all limited to my knowledge and personal experience – each woman’s experience is different so for a very detailed overview to better understand it all here’s a great website you can visit:
https://www.emedicinehealth.com/mastectomy/article_em.htm#mastectomy_overview

My cancer baby

9 months ago today I was diagnosed with breast cancer.  Since then I’ve experienced exhaustion, nausea, hot flashes, emotional highs and lows, severe physical alterations, and food cravings/aversions.  I basically had a cancer baby.  Don’t worry I won’t make you lie and tell me my baby’s cute ’cause we all know it isn’t.

While I’m officially done directly treating the cancer – woohoo! – I still have to take some steps to reduce the risk of recurrence, as I’ve mentioned before.  So today I started my every-3-week Herceptin treatment – the drug I’ve gotten with both my trial and chemo that targets the HER2 mutation.  I will also start taking Tamoxifen – a daily pill to keep my hormone levels low since as a reminder, my cancer responds to and feeds off of hormones.   Both of these are to minimize the risk of recurrence and will be light on side effects – practically a party compared to the last 9 months.  The other major milestone I have to check off my list is my final reconstruction surgery scheduled for May 15.   I can’t even tell you how I excited I am for that… well, I can and I will.  But I’ll fill you in on that once the date gets closer. 

So I’m still sitting here letting it sink in that chemo is over and I’m now a breast cancer survivor.  While it’s been a life-changing experience and I’ll forever be a champion of early detection, advocacy, patient care, research, etc., this doesn’t define me.  I am not cancer and cancer is not me.  I’m a daughter, sister, aunt, pit bull cuddler, travel lover, and friend… who happened to kick cancer’s ass.  Well, that’s not true.  Technically I just showed up for my appointments.  The doctors, nurses and staff at Dana Farber are really the cancer ninjas that won this battle for me.  They truly are remarkable people who have somehow made having an ugly cancer baby somewhat enjoyable.

Take that cancer, I won!

Kristen – 1. Cancer – 0. I’m just looking at that letting it sink in………

I’m not sure it’s totally hit me yet but today marked the end of chemo. And I’m actually pretty speechless. Shortest blog post award goes to what should probably be the most exciting one but my brain just keeps saying over and over again… TAKE THAT CANCER, I WON. So I’ll leave it at that for now. Stay tuned for more when my brain is functioning properly again.

Taxol – a love/hate relationship

I have one more chemo treatment – one more week until I’m a breast cancer survivor and I’m having mixed feelings about it. Wait, no I’m not. I’m nothing but insanely excited.  I am over the moon, freaking out in an amazing way, happy and excited.  But it did make me realize I’ve had a serious love/hate relationship with my chemo drug called Taxol. Here’s a quick note to Taxol about my feelings.

Taxol, I hate you for making me a bald chick who looks, no question, like a cancer patient. My poor eyebrows are hanging on by a thread and my head gets so cold when I forget to put a scarf on when I take Stella outside (that’s also partially New England’s fault for snowing in April). The one upside is people have stopped asking me “what brings you into town” when I check into hotels for treatment. I no longer have to say “oh um a work thing”.  Taxol, I hate you for making me so tired that I couldn’t get out of bed on my nephew’s birthday.  The fatigue is really getting old and I want my energy back. Taxol, I hate you because you’re making it trickier to put IVs in every week. My veins are literally running away from you. I used to get compliments from anyone with a needle – they’d tell me “oh you have such great veins” before they poked holes in them. I now have to run my hand under warm water to make them appear – like some weird hide and go seek game. Taxol, I hate you because my toes and fingers feel like I stuck them in the snow overnight. I have neuropathy which is a funny numb/tingling sensation and it’s really annoying. Taxol, I hate that sometimes I can’t think of a simple word I’m trying to say or remember what I did 30 seconds ago.  Chemo brain, it’s a thing.  And it makes me feel really dumb.  Taxol, I hate you because I don’t feel or look like myself and I want that back. So take a hike, will ya?

On the flip side, Taxol, I love you for killing cancer. I mean seriously, you KILL CANCER for a living. That’s pretty bad ass. Taxol, I love you for saving people’s lives. I bet other people love you for that too. Taxol, I love you for giving me reassurance that even though they literally amputated my breasts to remove the cancer, you’re my 2013 Koji Uehara with the bases loaded in the 9th inning – GO SOX!

Speaking of the Red Sox… I got a really amazing surprise yesterday. I went to Dana Farber’s resource center to donate a few items and the woman working at the desk thanked me. I assured her that, as a patient, she and Dana Farber deserve the thanks. Having found out that I’m a current patient she asked if I like the Red Sox.  I’m certain if I hadn’t said yes immediately my mom was going to tackle me and scream it out for me.  She gave me 3 tickets to take my parents to the game on Sunday in Fenway’s fancy, schmancy pavilion section. I was blown away – they really have cracked the code to “above and beyond” patient care. They’ve somehow managed to make cancer a positive experience. It’s truly an amazing place that I have a love/love relationship with and will forever be committed to supporting their efforts and paying back what they’ve given to me, which will soon be the ability to say I’m a cancer survivor.

Onward to the finish line!

There was a time when very little was known about the HER2 mutation found in about 20% of breast cancers. When it was finally discovered, a HER2 positive breast cancer diagnosis came with a very poor prognosis. HER2 positive breast cancers are more likely to spread and less likely to respond to treatment making it one of the more aggressive forms of cancer.  Finding out that I had HER2 positive breast cancer at the age of 35 was frightening to say the least.  But like my doctor said the first time we met, the greatest advancement in the treatment of breast cancer over the past decade is the breakthrough discoveries in targeted treatments that have increased survival rates of HER2 positive patients by more than 30%, as well as help patients avoid traditional toxic chemotherapies. This includes the clinical trial I’m proud and grateful to have completed last year. Because of the cutting edge research and patient care available at Dana Farber, like the trial, in 2 short weeks, I will join the ranks of courageous, badass, breast cancer survivors.

To celebrate, to give back, to raise awareness, to say thank you, to honor the memory of Helen Gale, Don McCallum, Patty Maglio and Julie Deveney, and to support Dana Farber, I’m participating in my second Jimmy Fund Walk in September with team Touch Your Boobs. Please consider spreading the word or donating to help reach my very ambitious goal of $7,500!   It’s the least I can do for the place that is literally saving my life. Cue dramatic movie music….

http://danafarber.jimmyfund.org/site/TR?px=1004247&pg=personal&fr_id=1060&s_hasSecureSession=true

My appreciation for all of your support through this crazy roller coaster is difficult to express – thank you doesn’t cut it but it’s all I’ve got so THANK YOU. Thank you for your kind words, for reaching out at random times, for encouraging me to keep fighting and for supporting efforts to help kick cancer to the curb. This fight isn’t over yet – 2 more rounds of chemotherapy until I can say I’M A SURVIVOR.  Holy crap I almost cry every time I think about it.  I’ll also have final reconstruction surgery in May.  And to fight the risk of recurrence I’ll continue with 9 months of Herceptin infusions every 3 weeks (chemo-like drug that targets HER2) and 5 years of a daily hormone therapy pill.  But the worst is behind me and I couldn’t have done it without you.  Onward to the cancer – and Jimmy Fund Walk – finish line!