Walking on sunshine – and don’t it feel good!

I hope the rest of you get that annoying song “Walking On Sunshine” stuck in your head like I do right now. You’re in this with me now.

In other news, I’ve made it over a week since my first treatment with only mild flu-like side effects – some nausea, aches, a bloody nose here and there and fatigue (though wanting to nap isn’t too out of the ordinary for me and just an awesome excuse to sleep more than usual). Congrats to me – I’ll be celebrating with an iced tea mocktail and a Friends marathon tonight! Big plans….

What other plans do I have coming up? So glad you asked. I am really proud that I just signed up to be the captain of team Touch Your Boobs for the 2017 Jimmy Fund 10k Walk on September 24th! My team and I are looking to raise $3000 in support of the Jimmy Fund and Dana Farber Cancer Institute. I felt compelled to do this walk not only to raise money but also to raise awareness of the importance of self exams for young women, to ensure Dana Farber has the resources it needs to continue providing excellent care to its patients, and to prove to cancer that it cannot beat me.

Please consider donating (link below), cheering us on or spreading the word! Any and all support is welcome to let cancer know we’re not messing around.

https://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1164089&lis=1&kntae1164089=759BDC63B38D4A7BBE68163FBCCE18CA&supId=449755970&team=6959465:

Trastuzumab + Pertuzumab

Are you trying to pronounce those words with a confused look on your face? Me too and I keep just trailing off at the end like… trassstuzammmmniner. But those funky words that make me feel dumb because I can’t say them are the Pac-Man drugs I got pumped into me for 5 hours yesterday. They’re flowing through me eating pac-dots, getting energy from power pellets and swiftly evading Blinky, Pinky, Inky and Clyde. Call me a nerd if you want, but Pac-Man was awesome.

I’m so happy the first treatment is complete – I’m already looking forward to the last! I know it’s going to be a long road but I continue to be impressed and feel at ease with the care I’m getting from everyone at Dana Farber. And finally, after 5 biopsy sites where they removed 15 tissue samples and inserted 5 clips (aka wild animal tags), 2 MRIs, 5 mammograms, 11 vials of blood taken, an EKG, an echocardiogram and lots of ultrasounding, I’m finally in the game.

Yesterday’s treatment was fairly uneventful. They inserted an IV, I watched movies and ate dinner in a reclining chair with a big window view of the city. It was a long day of another biopsy, a meeting with my doctors and 5 hours of treatment. Going forward, I’ll go in once every 3 weeks for a day of testing, monitoring and 2 hours of treatment through the end of November. The most common side effects are flu-like symptoms and some other minor things that can kick in right away or throughout the time between treatments. So far I feel tired and like a bus hit me (but only a small bus, maybe even an empty Airstream) because I’m pretty sore all over.

So the good news, other than my first treatment being checked off the to do list, is that I tested negative for the 9 genetic mutations most closely linked with breast cancer. It doesn’t explain why the F I have breast cancer now but it’s good news for other women in my family and it means I’m not at any increased risk for ovarian cancer as well. Still TBD on whether or not I test for the additional 33 genes they can use my blood to test for. I have time to decide on that and figured it was one less thing to worry about for today. Stay tuned.

The other good news is I’m now the proud owner of touchyourboobs.com and touchyourboobs.org! I’m going to eventually move my blog over once I figure out how the heck to do that. I’m surprised I even started a blog to begin with so I’ll let you know once I eventually figure that out. But I see this as a great opportunity to broaden my message of touch your boobs beyond badgering my friends and family about it. I hope this message spreads far and wide – particularly to young women. While it’s less common to be diagnosed as a young woman, it happens. And we don’t get regular mammograms so the only real way to detect breast cancer early is to touch your boobs. So do it! Am I glad I have cancer? Hell to the no. But am I glad I caught it early by touching my boobs? I want to swear here but my dad told me I have a potty mouth so I’ll just say with enthusiasm, YES! So I touched my boobs and I have stupid cancer but I’m in it now and you can’t win cancer. You will take things from me, you will make me feel like crap, you will annoy me to no end but you won’t break me and you won’t win.

Put me in coach

I have a logo! If anyone out there ever needs a logo designed, I highly recommend the shop wearecreatives on Etsy. They are incredibly responsive and will revise the design as many times as needed until it’s exactly what you want. And this is exactly what I wanted! I don’t really know why I needed a logo (maybe I didn’t?) but I am trying to send a pretty strong message for you to touch your boobs and I thought this helped in some way. Additionally, I started an instagram account you can follow (@touchyourboobs – stay tuned for posts!), all in the name of spreading the word to touch your boobs. I really, really mean it. Early detection is critical – according to Johns Hopkins Medical Center, “40% of diagnosed breast cancers are detected by women who feel a lump”. And it is so treatable if diagnosed early. As I mentioned before, this website is great for a “how to” in touching your boobs and I encourage you all to enter your name and email for the free early detection resource they offer:
http://www.nationalbreastcancer.org/breast-self-exam

More important than my logo, I have a plan! I start treatment next week. I’m so ready. Based on the testing they did they believe I am stage 2 due to the size of the tumor. The good news is my lymph nodes all look normal. Being stage 2 qualifies me for a treatment plan that includes targeted therapy followed by surgery and chemotherapy. For more info on stages and types of treatment check out my “hey cancer, I’m coming for you” post.

So starting next week, I’ll get targeted therapy for 18 weeks. This particular treatment targets the HER2 that I tested positive for. The cancer is dependent upon the HER2 and this drug finds it and destroys it in the breast and anywhere else it might have tried to escape to in my body, which in turn kills off cancer cells. In my head I picture my body looking like a game of Pac-Man. There used to be a pizza place we went to when I was little where my brother and I would sit at the Pac-Man table waiting for our food. I’d get so anxious to start playing and that’s exactly how I feel now. Ready to play and ready to win.

After my targeted therapy there will be surgery and there will be chemo. But I won’t know the details until it gets closer to the end of the targeted therapy and we see how my stupid cancer responds to the Pac-Man drug. I am in good spirits, I am confident, and I am ready. Put me in coach. As positive as I am, I have my moments of feeling sad, anxious and nervous. But I snap out of it really quickly and a lot of times it is because of the amazing people I have in my life. So if I haven’t said thank you enough for the support, outreach and love let me say it more clearly. THANK YOU. And touch your boobs.

Monday Funday

5 hours, two blood tests, one IV, an ultrasound, a mammogram and an MRI later, the waiting game continues. And I need a nap. I’m so ready to get this fight started but I still don’t know the treatment plan yet. Soon I hope – stay tuned.

One thing I learned more about today are the options for genetic testing (one of my blood tests from my Monday Funday). They can test for up to 42 genes that indicate your risk of being diagnosed with breast, ovarian, uterine, colorectal, gastric, and pancreatic cancers. That’s a lot of information to know. I opted to test for only the 9 that are most closely linked to breast cancer. I think that’s enough for my brain for now but I have up to 3 months to change my mind and test for more using the same blood sample. Like the doctor said, you can’t “unknow that information” so I’m thinking hard about my options. Now, you may be thinking to yourself “umm you already know you have breast cancer why are you getting tested at all?”. Good question friends, I asked that of myself as well. A few things made me go ahead with it. For one, it’s good to know for other females in my family. It might lead them to be eligible for testing as well or at the very least help them be more careful about self exams and screening. Secondly, some of them greatly increase the likelihood of ovarian cancer and I can be more proactive about preventative options if I test positive. Lastly, I may go ahead and get the full 42 gene test so I might as well give them my blood now and spare myself the return visit. For me, the main benefit would be getting closer and more frequent screening in the future if I were to test positive for any of them.

So the waiting game continues for now. I hope to have a plan in place soon. I’m lacing up my gloves preparing for the fight. It’s not going to be fun or easy or quick. It certainly won’t be without some crappy side effects. It’s going to be a long, bumpy road but I’m eager to get on it and even more eager to beat this thing. You’re going down cancer!

Hey cancer, I’m coming for you

I’ve learned a lot in the past 3 weeks. Not only do I have dense and busy breasts, but after 5 hours at Dana Farber yesterday I also learned they’re “lumpy”. At first I really thought they were complimenting me… now not so much. I also learned that I definitely have breast cancer. A naive part of me thought they might say I was misdiagnosed then I’d have to apologize to everyone for making you say “touch your boobs” and sending me gifts. But deep down I knew that wouldn’t be the case. I also learned that a diagnosis isn’t as straight forward as yup you have cancer, here’s how you treat it, and we’re done. It’s complicated and there are many pieces to the puzzles. And the doctors try to piece them together and formulate the best treatment recommendation based on you, your diagnosis and your preferences. I learned, most importantly, that this cancer picked the wrong bitch to mess with. I’m coming for you, cancer.

I’m not sure those are the lessons the doctors were hoping I walked away with so I’ll get down to the legit information they relayed to me. I learned more about my diagnosis and treatment options but that I need further testing in order to complete the puzzle we’re piecing together in order to make a final determination on both.

As a part of a program at Dana Farber for young women (age 44 and under) with breast cancer called Young and Strong, I was also offered genetic testing and fertility preservation options. I don’t know much about either yet but they’re just two of the services offered through the program. Others include support groups, education programs, etc. So as a part of these services I’ll meet with a genetic counselor to determine if genetic testing is the right option for me based on the likelihood of having a genetic mutation (family history will help determine that). I’ll also meet with an oncofertility specialist to discuss preservation options. Chemotherapy has the potential side effects of damaging reproductive parts or causing premature menopause. I don’t know much about either of these and whether or not I’ll participate in them but it was something I learned more about on my journey and wanted to share. Stay tuned for more.

So onto the diagnosis. Like I said, it isn’t a straight forward “yup, you gots the cancer” type of a thing. There are so many different aspects to a diagnosis and as I mentioned in my “what is breast cancer” post, this guide is really helpful to understanding it all:
http://www.breastcancer.org/cms_files/47/Breastcancerorg_Pathology_Report_Guide_2014.pdf

So my diagnosis…. drumroll please! The good news is my left breast biopsy came back benign. However, they want to do a little more poking around before making a final diagnosis there. The, what we’ll call, not awesome news is I have invasive ductal carcinoma in my right breast – basically breast cancer that started in a duct and has left the original site. The grade of a cancer refers to how different the cancer cells are from the normal cells, rated on a scale of 1-3. My cancer is a 2-3 meaning they definitely don’t look normal and are growing at an intermediate to high rate. Put that in the not so awesome category. The good news is that it’s still early – it’s at least stage 1, possibly stage 2. Stages refer to how large the tumor(s) is and how much it has spread. The additional testing will help determine the actual stage but for now we know it’s at least stage 1. Stay tuned for more on that.

I know a couple of other pieces of information as well. They test for hormone receptors – both estrogen and progesterone receptors. I tested positive for both which means the cells “listen” to signals from hormones and they respond to hormonal therapy. I also tested positive for HER2. HER2 positive means the gene is abnormal and causes the cells to grow and divide more rapidly. This is in the “not awesome” pile as well but my doctor yesterday said something really reassuring. She said if she had to pick the most significant breast cancer advancement in the past decade it’s the research and treatment options for HER2 positive cancer. There are targeted therapies now that HER2 patients respond really well to. And Dana Farber is on the cutting edge of cancer research and treatment in general, so I know I’m in good hands. Overall, there is some good news in the shit pile of not awesome news and I feel more confident than ever that I’m going to kick this cancer’s ass.

So, I mentioned there are more pieces to this puzzle that require additional testing – which means another mammogram, ultrasound and MRI on Monday (reference my first post for how fun this all will be to repeat). They need to confirm the size of my tumor(s), check my lymph nodes and re-check the left breast. All of that, like I said, will confirm a final diagnosis and treatment plan. I want to emphasize that I make it sound like a nightmare, it really isn’t. It’s completely tolerable. I just want to be honest that it can be uncomfortable but I want to stress how important it all is to get it done. They’re being thorough and as much as I joke about getting pulled around by my boobs, I couldn’t be more appreciative they’re double checking my dense, busy, lumpy breasts.

The treatment plan is not confirmed yet so I won’t go into too much detail around options but there are two types of treatments. Local treatments target the specific area and that includes surgery and radiation. Surgery options are a lumpectomy (removal of the cancer) or mastectomy (total removal of the breast with reconstructive surgery). For this I have a surgical oncologist to oversee my treatment plan. There are also systemic treatments, which are drugs that spread throughout the body to go after any cancer cells wherever they may be. This includes hormonal therapies, chemotherapy and targeted therapies. To oversee this course of treatment I have a medical oncologist. Again, the further testing will help determine a plan and sequencing but I will have a combination of most, maybe all, of these options.

That’s a lot of info. I’ll stop for now. I have one recommendation for anyone going through this and that’s bring a notebook. My doctor asked me if I’m an engineer because I was so organized, took thorough notes and asked questions. It’s only because I’m a nerd, feel inadequate if I don’t know everything and also don’t listen well if I’m not writing. So touch your boobs and bring a notebook. I’m getting so bossy these days, I know. But just do it.

I’m tired and my brain is spinning but I’m so confident and prepared to take this on. The doctors at Dana Farber are really amazing and made me feel at ease. I’ve also gotten so much love and support. I am overwhelmed by it in the best way possible. To summarize, cancer makes you popular. I’ll leave you now with words of wisdom from my insightful big brother… time to kick cancer in the dick. So cancer, I’m coming for you.

What is breast cancer?

I’ve slowly started to absorb that this is real. I actually have breast cancer – it’s pretty weird to say the words but it’s sinking in and I’m starting to want to understand more about it. At first it was too overwhelming and I’ve smartly stayed off the internet afraid of what I might find. But one thing I’ve started reading is a document the doctor sent me home with, which is actually really helpful to understand a breast cancer diagnosis. You can find it here:
http://www.breastcancer.org/cms_files/47/Breastcancerorg_Pathology_Report_Guide_2014.pdf

What I’m looking forward to is checking all of the boxes they have available as they tell me the details of my diagnosis – hopefully on Tuesday which is when my first appointment at Dana Farber is. There is so much more I need to know and understand to be able to answer everyone’s questions but I have a feeling I’ll be an expert in no time. Stay tuned for more. In the meantime, touch your boobs!

How to touch your boobs

I’ve heard from an overwhelming number of people that they’ve never done a self-exam because they don’t know how to.  I think that’s probably normal but it’s not ok.  You have to do them.  If you don’t, I won’t be your friend anymore.  Big loss, I know.  You won’t have your favorite sweatpants wearing, couch laying, nap taking, cheap wine drinking, Disney movie watching friend to do nothing with anymore.  So here it is y’all.  How to do an exam:
http://www.nationalbreastcancer.org/breast-self-exam

I really like this website because it most importantly tells you to check standing up and laying down.  Like I said, when I checked laying down my sneaky little lump friend played hide and seek on me.  So I thought it went away.  So please, do me a favor (I have cancer I get to ask for favors now) and TOUCH YOUR BOOBS.  Every month.  Standing up and laying down.  And we’ll still be friends.

Ladies, touch your boobs

Ladies, you really need to touch your boobs.  My doctors always stressed the importance of self-exams so I’ve always done them.  I’m here to now stress that to you.  TOUCH YOUR BOOBS.  Touch them standing up, touch them laying down, touch them from the armpit to the nipple.  Get to know your boobs, how they feel and how your cycle effects them. Touch your boobs.

Here’s why. A few months ago I was doing a self-exam and felt a lump. I decided to ask my doctor what she thought. She said if it goes away in the next few weeks it’s probably another cyst but if it doesn’t go away just schedule a mammogram. Well here’s the tricky thing.  When I was laying down I couldn’t feel it. So I thought to myself, it’s a cyst and it went away. I decided to check again and this time I was in the shower standing up.  Guess what… there it was again. I was a little confused about whether or not it was the same lump but I took some words of wisdom someone gave me to heart – don’t fuck around with breast lumps. Something else was in my mind telling me to schedule it as soon as possible and that was my strong family history. I’ve had maternal and paternal aunts and grandmothers have breast cancer so I called to get my mammogram scheduled.

July 6: I had my mammogram and all the while I was thinking they’re just going to think I’m silly for coming in with a cyst.  But hey, might as well get it done and off my mind.  I’m not going to lie, mammograms are pretty uncomfortable.  First someone gives you an exam as well, I’m used to touching my own boobs like that but a strange lady with cold hands doing it was a little odd, though I must say she was extremely friendly and made me feel at ease.  She felt the lump I had found myself but also informed me she felt another one as well – both in the right breast.  So she marked me up for the two areas they wanted to look at. Now onto the actual mammogram, someone is basically pulling you by your boob to stand as close as possible to a robot like machine that squishes your boobs into pancakes repeatedly.   It feels like they’re going to explode but let me assure you, they do not.  What happens next is you lay down for someone else to come look at and feel your boobs for an ultrasound.  Again, not the most comfortable thing ever, but all part of a very necessary process.  What I learned that day is I have “very dense breasts”.  They kept saying it and I wasn’t sure if it was a compliment or what.  Turns out breast tissue can be anywhere from very fatty to very dense.  Mine happen to be very dense – they told me this about 10 times.  What that means is it makes it harder for them to see things in the images so my boobs were being difficult. Figures.

I was still waiting for them to tell me to leave because I just have a cyst.  But instead they had me sit in the consultation room and let me know what they found was very concerning.  The lumps we both found were definitely not cysts and they also saw a cluster of calcifications in the same breast that looked concerning.  They wanted me to speak with a doctor about a biopsy.  Ummm, ok.  That’s not what I was expecting but I went ahead and talked to a doctor who said it looks like it could be an early stage of breast cancer.  He scheduled me for an MRI and biopsy for the following week.

July 11: I had an MRI, which I have to tell you is yet another uncomfortable test.  You’re basically slid into a tunnel where you have to lay still for 30-45 minutes while very aggressively loud noises clang around you.  Picture the scene in Dumb and Dumber where Lloyd Christmas asks if you want to hear the most annoying sound in the world.  It’s like that but worse because your boobs are hanging down into these plastic caverns, you feel like you’re in a coffin and you have an IV hooked up to you so they can inject dye for contrast imaging.  Super fun times.

July 14: I was scheduled for a biopsy of the right breast since that’s where the masses were found as well as the concerning calcifications.  The MRI also showed a mass in the left breast.  The doctor informed me that since the right breast is so concerning they’d like to be safe and also biopsy the left, if I can handle it after the first two.  I told them let’s do it.  So for about 90 minutes I had needles jammed into me for Novocain and tissue extraction in 3 separate locations.  It is not as quick and easy as you might think as they need to use ultrasound to manually locate the tissue they want to extract then move the needles around to the exact spot they need them to be in.  So it’s kind of slow and very uncomfortable.  Not only do they have to extract tissue they actually have to then go in and insert “clips” that indicate where the masses are in case additional surgery is needed.  I likened it to tagging an animal in the wild – the doctor said he had never thought about it that way but I’m pretty sure he’s going to use that analogy going forward.  You’re welcome.  It was pretty tiring and left me with some decent bruises but I again learned something new about my breasts!  Not only are they “dense”, they are also “busy”.  I happen to have a bunch of things like cysts and whatnot that make it even harder for them to read the imaging and locate what they need to.  Dense, busy breasts.  Who knew.

July 18: I was scheduled for an in-person appointment to get my results. I won’t bore you with the details of waiting and the insane amount of anxiety I felt not knowing.  But when the doctor walked in he simply said “its cancer”.  I obviously had the cancer before that moment but it feels different once you know.  It’s a little shocking, it’s confusing and it’s overwhelming.  But it was also a massive relief to hear him say “you’re going to be ok”.  I caught it early enough that I’m really looking forward to starting treatment and kicking this cancer’s ass.  I will know more specifics about the cancer itself and the treatment plan but for now, yea I have cancer.  But I’m going to be a survivor in no time.  Just remember, ladies, touch your boobs.