Sunday, December 10, 2017

5 years ago today

5 years ago today I had my last chemo infusion.

I spent most of today writing a final exam for the class I'm teaching this semester. 5 years ago, I wouldn't have even thought that my side job would be teaching at a University. I'm not sure that I would have even applied.

When I told my bf of the survivorversary he broke out the good stuff

Sparkling grape juice and dark chocolate. 5 years ago today I couldn't eat chocolate, it destroyed my insides and tasted gross. 

Here's another victory; my mother forgot. December 10th is no longer an ominous day for her. I'm happy, healthy with a head full of shoulder length hair. She cannot believe she didn't remember the date, as it seemed impossible to be able to forget when I had finished. 

And there was only one small reminder of the long term effects of cancer treatment; I washed down my blood thinner with the sparking grape juice. But, I smiled while doing it. 

5 years has come fast,  especially from the days where I just kept singing "Just keep swimming, just keep swimming". 

I'm so happy to be in this place. 

Sunday, November 12, 2017

Making Strides, Celebrating all the Birthdays, XRT follow ups, people on blood thinners should not be allowed to used mandolines, and recent news that will hike up the FOR meter

Been having some fun living my life without biopsies, that I have some catching up to do.

Making Strides Boston 2017 
Mom and I went again this year. I got my survivor sash and a cape. Yup, a superhero cape. It was a brisk morning, but I do feel like I'm advocating for the survivors under 40 while I'm out there walking around. My mom's favorite part is how many stares and mouths agape that I get walking around with my survivor sash. This year, on the way home an man in his 50/60's kept hitting his wife until she turned to point me out. I just smiled and waved. The barista at Starbucks asked me if I dressed like that ever day. I'm not going to lie, I considered making the cape part of my daily look. 

Celebrating Birthday's
I love that the American Cancer Society once had a slogan "Here's to more Birthday's". I had never really been one to celebrate my birthday, but now I do make sure I do something special, eat some treats and see some of my favorite people. 

Celebrating my birthday, however is nothing compared to how much I love celebrating my niece's birthday. She turned 3 this year and Mom and I flew down to Arizona for a few days. It was the first flight I'd taken since being diagnosed with DVTs and I wore compression stalkings on both flights. On the lead up to the flights my left calf was being all twingy with pain, but I think that it might have been all in my head. I was nervous to fly, but knowing that I was going to go get quality "Auntie Time" eased the nerves. 

Radiation Oncology 
Well, I never used to believe other survivors that there would be time that I wouldn't think about having had cancer every day, but I did. Now, I've transitioned into forgetting that I have oncology appointments! The pendulum may have swung too far. So, at my rescheduled appointment with my radiation oncologist all was well. We talked about how good my boobs looked, how happy I looked and when my next vacation was. Who doesn't want to start a Monday morning like that? 

People on Blood Thinners Should Not be Able to Use Mandolines 
I love kitchen gadgets. Love them. My boyfriend has a mondoline for very fine, constant and easy slicing. Well I was making an apple pie for Thanksgiving (it is less than two weeks away people, yes I am a planner) and despite his warnings that it wasn't really necessary and that he was worried about me using it, I sliced my finger on the 3rd section of apple (so like 45 seconds into using it). I watch my thumb slide right into the blade and then...... oh my.  I haven't had many instances of bleeding like that. 





Just kidding, it wasn't that bad. But it did involve a trip to CVS for some blood clotting gauze, butterfly bandages and fingertip bandages. Oops. Don't worry the apple pie was unharmed.

Jacking up the FOR 
Things I could have gone without. Studies are showing the ER+ breast cancer can recur 15-20 years after treatment.  Woman who had positive lymph nodes had the higher rate of recurrence. Well, that will give you some pause and make you continue to appreciate each and every cancer free day you got going on.

Makes me wonder, is 10 years enough on Tamoxifen? Should I just take that and my poop emoji shaped blood thinner 4-eva? Well, better make sure I don't miss my medical oncology appointment (in March!) and ask those questions. 

Wednesday, September 13, 2017

The trials and tribulations of navigating the Cancer Survivor world-AKA we'll just biopsy it

It was quite the summer; DVTs, blood thinners, colonoscopies and uterine biopsies. I began to feel like a human science experiment. Thankfully everything is benign and per usual "We would just like to monitor you, given your history". I swear I could make a template for some of my health care provider visits.

This summer I also continued to collect specialist. Now that I have the cardiovascular doctor, a gastroenterologist and now an endodontist.

An endodontist you say? Well, my adventures in dental examinations continue. I went in for my annual cleaning and they took some X rays, and then it began again.

"Hmm."

Crap. "What?" (Slightly concerned, but people say that a lot to me)

"Well that spot on your font tooth is still there and we think you should go see a specialist to see if you need a root canal." A root canal on my front tooth? Well that sounds all kinds of fun.

Off the endodontist I went. She was a lovely woman. One of the members of her staff looked at me and asked what bus route I took. Turns out we pass each other every morning. Yay bus people! (Those who ride public transportation together, stick together).

This lovely endodontist decided  to take her own 3D pictures of my jaw and there it was again.

"Hmm"

Crap on cracker. "What?" (Now concerned).

Well, she showed me what the imaging she had taken and it looked like a hole in my jaw. Right below my front teeth. A hole? Are you kidding me?

She then went through the options it could be and wrote them down 1) Dental thingermerbobber (didn't stick with me) 2) Something that would be replaced with putty 3) Bone MET. I gave her my best "really?" face. She said "Given your past medical history we do need to investigate further and we may need to biopsy your jaw". That made me start routing for a root canal. But, the specialist needed to send my films out to a specialist to have them read it further. Sounds about right.

So then I wait for the specialist to read my special dental films from the specialist. I am really good at waiting for results at this point.

1 week later the endodontist called. "Great news. It's a benign cyst. Nothing to be done. Don't let anyone ever do a root canal on that front tooth".

Winner winner chicken dinner.

Talk about the ultimate outcome. Glad it was just weird films and nothing else. Glad that it didn't come to a biopsy either.

Now back to living my life and eating crunchy and sticky foods with a complete jaw.

Friday, August 18, 2017

#BraveLikeGabe

I've had a hard time getting any consistent running going since the DVT's. Not sure why, but have been walking more than anything. To say my fitness is seriously lacking and I have been uninspired would be correct. 

However, I did follow the extremely inspiring story of Gabe Grunewald. The best way to understand her story is to read the great Sports Illustrated article "Athlete gets cancer. Athlete fights cancer. Repeat, again and again..."  It will make any cancer survivor glad they had a common, well researched with well defined treatment. It made this one, very happy that a)I've only had cancer once b) it was the most common kind. 

Today, one of my runner friend's posted the video of Gabe's story and her hunt to go to USA's. 

She may not have secured the qualifier this year, but because so many other athletes didn't get the standard her previous time got her into USA's. After a couple rounds of chemo, it ended up being more of a victory that she was out there (and for the record she still ran really fast!) 

So, I sit here on a Friday, putting a training plan back together. Trying to regain some fitness. I've already proven that I am no longer as quick as I once was, but I do miss have baseline fitness. And I am inspired. 

If you too are inspired you can donate to Gabe's cancer journey you can do so here



Tuesday, August 8, 2017

Diagnosis Day-5 Years Out

With the anniversary of my diagnosis day (August 8th, 2012 at 3:30 in the afternoon), my mother and I were discussing the day. She remember's sitting with me wishing it was 5 years from then, when she knew everything would be ok (forever the optimist, that mother of mine).

5 years after hearing, "you have breast cancer". 5 years after being forced to face my own mortality and choosing to let people and all the good in.

5 years of #cancersurvivorproblems.

Now, this is another thing that keeps on growing. When you have had breast cancer and it surprised your doctors, they spend a lot of time trying not to be surprised by things. So, when you are physically active and you still develop blood clots on your long term hormonal treatment, everyone is surprised afain. Then they put you on a poop emoji looking blood thinner. And that's when people start checking on everything (#cancersurvivorproblems).

Because my iron labs have been a little off multiple people advocated that I have a colonoscopy. Oh yeah. I got to drink this 4L jug of poop juice...
It is pictured here with my clear liquid diet and some items featured in my low fiber diet that needed to be consumed leading up to the exam.

And guess what? The anticipation of the colonoscopy is the worst part. The actual prep, isn't pleasant, but for a constipated lady like me (#cancersurvivorproblems), it did get rid of all my belly pain. And I was awake enough that I got to see the inside of my colon. (The science nerd in me was so amped). And there was nothing wrong with it (not just per my visual inspection, also per the gastroenterologist who did my colonoscopy).

5 years ago, I never would have imagined that I would get excited when I put a couple of months together without a doctor's appointment or test. I never would imagine that I would be living with my boyfriend or making travel plans to celebrate my niece's 3rd birthday. I never would've imagined that you can experience overwhelming gratitude about being alive at the same time you feel like human science experiment, but I'm glad I get to.

And who would have known 5 years ago I would wake up singing soulshine. I can deal with all the #cancersurvivorproblems because I'm still here to have them, and it sure is better than rain.






Wednesday, July 12, 2017

Why I Love to watch Playing House

I've been a big fan of USA's Playing House a comedy about two best friends and their travels through life and love of Kenny Loggins. These are two of the funniest people you will find on television.

I have been patiently waiting a year and half for the season 3 to happen (especially after the finale of season 2 featured Kenny Loggins singing my Mom's favorite song).

And then in May, my facebook feed had Stand Up to Cancer features Actress Jessica St. Clair Gets personal about breast cancer. And featured this blog post from her.

It was beyond relateable to me. Stage 2b ER+ breast cancer. The love of the Great British Baking Show. The gratitude and the self deprecation, was spot on and I got very excited to read that Perham and St. Clair would be writing their experience through cancer into the season.

I couldn't wait to watch......and I was not disappointed.

USA let every episode be available on demand and I blew through the seasons and I have watched all 8 episodes twice so far. What I really enjoy is that they show the character Emma living her life through cancer! It doesn't become the focus of the show.

You can tell that they really have lived it, and it's so appreciated. My favorite episode is "Ride the Dragon" as to me it had the most relatable moments.  Emma (St. Clair) has finished a chemo round and when she walks into a room/party of women people don't know what to say to her. And it takes Emma making a demand and using "come on, I have cancer you have to do what I say" to break the ice. Oh man, been there.

Then there is the interaction between Emma and her mother. Her mother just cannot spend enough time with her and give her enough hugs. Eventually, Emma gives way and just lets the prolonged hugs happen. Done that. (love you Mom) After cancer, one of my good friend's husband let me know that he totally appreciated that I actually hugged him now and didn't just do limp arms.

Finally, the most spot on depiction was the conversation between Emma and another cancer survivor. Their conversation about living a "Hell Yes" life and that cancer changes you because you have to face your on mortality is something that sneaks up on you through out treatment, but leaves an everlasting mark. I may have rewound this conversation and watched again and again. It's so great see the humor in cancer on television and not a melodramatic sad display.

The season finale (airing Friday July 14th or available via Comcast on demand) it is amazing. It has a great celebration of survivorship, friendship and Tina Turner.

Maybe I'll rotate episodes of the Great British Baking Show and Playing House. Now, that is a happy place.

Tuesday, June 27, 2017

Lahey 5K 2017

As all are aware the Lahey Health 5K Cancer Walk and Run is one of my absolute favorite events of the year. Obviously when the hospital makes a video of you running the 5K and promotes it, you best be ready to run!

And because they had done this little video and then asked me to give a little speech before about how much I love Lahey, a lot of great people came out to run with Team NED, including friends from elementary school, middle school, high school running buddies, my college besties, post collegiate track club friends, colleagues, my parents and my boyfriend. 
Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 


 How could it be a bad day? Friends came in from Colorado (with a 3 and 1 year old), Ohio (after leaving a 4 and 2 year old) and New York (with a 4 and 2 year old). These are brave friends! I am so grateful they were there. People juggled work schedules, family obligations and general life obstacles to be there. 

From the second I showed up early Saturday morning the atmosphere of gratitude and celebration of survivors was palpable. It started by meeting the wonderful photographer, who introduced herself as a 17 year breast cancer survivor. We discussed (as only other survivors will understand) how grateful we both were that if we had to get cancer we were grateful for breast because it is so well researched and that the tumors are usually outside areas that include vital organs. The BF just stands there shaking his head and after the interaction was done gives me a look and just says "okay....". 

As I walked through the crowd of people and dropped my bag off at the bag drop,  many people came up to introduce themselves and let them know they had seen the video and wanted to know if I was ready to beat last years time. I smiled, and let them know that I was happy to be out there running, but it was doubtful that I would be busting out some 7:57 min/mile (knowing what the last week had been). I ran into members of my treatment team who weren't sure I'd be there after the interesting week and half I had had. "I can't miss this event!" It warmed my heart to see all the people picking up their yellow Survivor t-shirts and the sheer volume of people at the Lahey 5k. 


Photo Credits: Theresa Johnson 
Just before the start of the race their is a little program featuring the CEO of Lahey Hospital and Medical Center, the chair of the Lahey Health Cancer Institute, a member of Burlington board of selectman and a grateful patient. This year that very, very grateful patient was me. As most everyone is aware I probably could have spoke for hours about my gratitude, but they said 2-3 minutes. My BF helped me whittle the speech down and my very proud dad filmed it on his phone while my mother looked on, beaming. 

 Video Credit: Proud Papa 


And then it was time to run. The ringers on Team NED (who I was bragging about to the CEO prior to giving my speech, letting him know that he'd be handing out multiple awards to Team NED) took off. And I struggled. But, my high school teammate, whom I have not run with in 17 years, gave up her competitive aspirations for the day and ran/paced me. She told me not to worry, that the day was about celebrating survival and she was happy to run with me. I really do have amazing friends! 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

Photo Credits: Theresa Johnson 

I was tired (it was very humid), but ecstatic. My friend had got me through the 5K in 25: 24. 8:11 min/mile. NOT my slowest 5K as I had feared. The last photo is me trying to celebrate. I then like any good dietitian walked directly over to the Dunkin Donuts table and consumed some munchkins and water. You know for recovery! 

Also, I did not lie in my trash talking to the CEO (still competitive much?), members of Team NED were the 1st Female finisher, 2nd Female Finisher and 30-39 age group winner. Way to go speedy ladies!

I was so touched that people flew, drove and made it a priority to get to the Lahey 5k again this year. It was so great to see many of my favorite people in one place and be able to run with them again. It is quite a celebration of survivorship and the exceptional work that in my extremely biased opinion the people at Lahey do.

Team NED ended up raising over $4,600 for the Lahey Cancer services and that is better than any fast 5K time. 

So grateful for all of Team NED and everyone who donated there time, effort, sweat, money and baked goods! 

Thursday, June 22, 2017

We'll just give it a whirl....and a trip to the ER

Since the DVT (deep vein thrombosis) x 2 diagnosis I have been that patient. I have been emailing my physician's asking questions, waiting for phone calls and taking a little trip to the ER for chest pain.

Last Friday, after pacing and waiting a return email I got a phone call from the NP I saw on Wednesday. She explained that Thursday had been her day off and that she wasn't ignoring me, in fact she had spent most of her morning discussing my case with lots of physicians. Here is what was decided.

1) I absolutely was not coming off the tamoxifen (phew)
2) The vascular doctors would like to see me that day in about 2 hrs if I could swing it
3) It was fine if I ran

So, I pick up yet another new specialist to add to my repertoire, a vascular specialist. She walked into the room and as she was closing the door, she looked right at me and said "You are not going to like anything I have to say".

I knew, right there we were talking being on a blood thinner.

She explained her reasoning. The blood clots were clearly being caused by tamoxifen and we cannot  remove the cause of the clots and we need to decrease the risk of the clots going to my lung (She repeatedly keeps telling me there is only a 5% risk that a clot would migrate from my calf). I begrudgingly agree.

We talk about all the blood thinner options and what my preferences would be (no dietary restrictions, take a pill once a day, minimal blood draws) and agree to start on Xarelto.  To give it at least a 3 month trial. It takes 21 days to load on the medication and it's main claim to fame is that the pill looks like the poop emoji

Given that this is my general feeling about the whole situation, it seemed only fitting. 

She can see my shear disappointment about having to start on a new medication. She encourages me to run, fly on airplanes and in general live my life.  

We discuss how I am clumsy and she explains that I will be bruised and just recommended I avoid falling down 10 or more stairs and striking my head. 

And because there is seriously something wrong with me all I can think of is the scene in Wayne's World when he asks "Will you still love me when I'm in my carbohydrate, sequined jumpsuit, waking-up-in-a-pool-of-your-own-vomit, boated-purple-dead-on-a-toilet phase" "Yes" "Party, excellent" 

I refrain from responding to her with "Party, excellent" and just take a deep breath and nod. 

Then I go pick up the giant pack of Xarelto to start with (it's very clearly labeled for what I take in morning and what to take at night) and has a warning sheet that is as wide as my wing span. 

The next morning I go for a run, and because I'm still having a lot of calf pain it is like running with a peg leg. But, I can still run. 

I start taking the medication and after 48 hrs on the medication I start having some right sided (the side of the clots) chest pain under my lumpectomy scar on and off through out the day. However, when I get home from work (after I leave the hospital) it becomes worse and pretty consistent. To the point that when I breath in it hurts more. I know I have to go the ER to get checked out, but I don't want to. My main reasoning "I didn't even go to the ER while I was on Chemo...." so apparently that meant that I will never go to the ER again. 

7.5 hours, standing chest xrays, EKGs, 3 failed blood draws, 1 IV placed into my bicep via ultrasound by a resident with a 5 inch needle, 1 chest CT with contrast (going to feel like you peed yourself) and 1 cup of urine later it was determined to just be muscular, not a clot. I felt silly for going in. The ER attending, resident, RNs and everyone else assured me that this was a very smart move and that I should always get it checked out. I also learned that it takes 3 days before the blood thinner really has a chance to start working. 

Now, I have gone for another run and actually have very minimal pain. I do have a very bruised left arm from failed blood draws and the successful IV placement. 

And I can still run. Trying to focus on the positive as we start the Adventures of Blood Thinners! Stay tuned for the next chapter. Hopefully, it involves less trips to the ER and more running. 

Friday, June 16, 2017

Now This I can Blame on Tamoxifen or How I got Blood Clots in My Calf

At one of my previous appointments, my oncologist had asked me to write a blog post talking about how benign tamoxifen was and how I had really no side effects. I agreed with her as I can count on one hand the number of hot flashes I've truly had, how I've learned to cope with increased severity of PMS (Captain Crazy Pants), and how I generally feel pretty good on it. After walking out of my mammogram and surgeon follow up like a boss I was totally prepared to write that post. But, all of this changed in the past week or so.

My brother, sister-in-law and 2.5 year old niece were in town for a really big princess party (also known as their wedding). So, naturally I took 2 weeks off from work and had a grand old time running around after the 2.5 year old and being Auntie Sara and part of the centerpiece production team. There were hair trials and multiple trips to Michael's craft store and a lot of playing with bubbles and movement. The only time there was sitting was to eat or when I was asked to read "Where the Wild Things Are" (as my niece would say, "Let the Grumpus Begin!"). Then came the actually wedding which is still a beautiful blur. Generally, there wasn't a lot of immobilization of my legs in the past week and half.

Starting on Saturday (the day of the wedding) my calf felt like I had had a charlie horse the night before and was sore in the middle. I had worn a lot of different shoes than my sneakers in the past week and my calves cramp all the time so I though little of it. I went for a run on Monday and my calf pain didn't get any better. I was concerned that I had torn the muscle which given the amount of picking up and tossing of a tiny person that had occurred in the week and half seemed reasonable. Tuesday, I noticed that the more I walked around the better it felt, but it was especially painful after sitting and the most painful after lying down for sleep. I found my right foot to be aching as well.

Thursday morning I was scheduled to get on a flight to Chicago. So, early Wednesday morning when I found myself doing what I know I shouldn't do, googling symptoms of DVT (deep vein thrombosis) and rationalizing that I didn't have any swelling (true), didn't have any redness (true), but that I did have pain that was fairly constant, no physical knots in my calf and point source tenderness in the belly of my calf. I decided that it was better safe than sorry and I called my PCPs office to make an appointment. "Hi, I'm been having calf pain for 5 days and I am scheduled to get on a flight tomorrow. Yes, 1:30 pm would be great". Thinking that a quick ultrasound would determine that my calf pain was a small tear and that my training for the Lahey 5K would be slightly derailed.

I meet with a lovely NP at 1:30 pm and I state why I am there "5 days of calf pain, on tamoxifen, want to get on an air plane tomorrow". She smiles, but gives me some words of caution, she had a 40 year old woman who was a patient last week who only had calf pain (no redness, no swelling) and it turned out to be a blood clot. She signed me up for my ultrasound of my right leg.

So now instead of shirtless fun, it is time for more pantless fun! A lower extremity ultrasound involves the ultrasound tech pushing the wand very hard against your veins to get good pictures of what is going on. The start in your groin and work their way down to your ankle. Now, when you are having some tenderness in your calf and someone needs to press really hard with a solid object against it multiple times you better sit on your hands or lock them together because your first instinct is to knock that wand out of the very kind ultrasound tech's hand. And when she is done, she states that she needs me to point to where the pain is and has to double back and take even more pictures right there. She apologizes, I just nod at this point.

Then they send me back in to see the NP. I get put in a room right away and I think great, she will roll right in and tell me that I should back off on the running for awhile.
And then I wait.
And wait.
And wait.

About 40 minutes later, the NP comes in with 3 pieces of paper and apologizes for the wait, but states she had to talk to 3 different physician's about the plan and still had more people she wanted to discuss this with.

I look at here and ask "What the farfanoogin (this word has been edited?"

She tells me that there are two clots in the proximal veins (those below my knee) and they are small, but they are present.

Me: Litany of expletives

The NP then goes on to state that it's not recommended that I get on the flight the next day, but I am an adult and can make my own decisions. She also tells me to start taking a full strength aspirin daily and that in a week I will have a follow up ultrasound to see if the clots have dissolved.

Me: Expletives and bargaining like my 2.5 year old niece in order to still get on the flight the next day.

The NP is just shaking her head right now and sends my oncologist a message to make her aware about the blood clots, a known side affect of Tamoxifen. And then states that I am pretty close to the 5 years that they have people on tamoxifen. I explain to her that I am supposed to be on it for 10 years. She now looks like she would like to use a litany of expletives.

I leave the appointment totally flummoxed. I keep very active. I haven't had long periods of immobilization, how could my calf pain be two blood clots (not just one!).

Then I get mad. Forget these blood clots, I'm living my life! I'm getting on the air plane, who cares what the vascular surgeon whose an expert in DVT suggests!

My very rational thought process than proceeds to fear. What if I have to stop taking the tamoxifen? What happens then? I haven't even hit a minimum of 5 year?

And then the final stage sadness. I had to tell my boyfriend who had rearranged his entire schedule for the past week and a half to do a ton of stuff with my family that our trip was off. No fancy hotel stay in downtown, no architectural tours, no great restaurants for dinner.

So, for now, it's back in a holding pattern. Taking aspirin, still taking the tamoxifen until I'm told to stop and walking around frequently to lessen the pain and waiting for a follow up ultrasound.

Damn you tamoxifen (But, please don't take me off of it!)! So conflicted...and back to pacing while I wait.




Sunday, May 28, 2017

Squished and cleared

Last week started with my new version of tests since the PRESENT trial ended. I do not have to follow up with my oncologist, so I had a mammogram and follow up with my surgeon.

Because I know how to start the week out right, I had my mammogram at 8:30 am on Monday. It is always interesting to watch people do math when I give them my birth year and have them give the puzzled look as to why I might be having a mammogram. I like to smile in response. I think that imagination is an underutilized skill and do it as a public service.

My mammogram tech I have had previously, and she is great. She is also 4 ft 11 inches; I am 5 ft 8. I had to scrunch down to have the mammogram done. But, seeing as I need to scrunch down, stick my butt out, pull my arm, smoosh my face into the plastic shield, and generally try to become one with the mammogram, scrunching down a bit more is not really an issue. She also repeatedly reassured me that she was taking more than 2 photos on each side so that I didn't have to be called back. She worked meticulously to get all my markers in (two in the left, multiple in the right) especially because they are so close to my chest wall.  We discussed my particularly challenging anatomy-large rib cage, shoulders that have minimal range of motion and 1 and 3/4 boobs. She, however, worked her magic and no more pictures needed.

My follow up with my surgeon was very short and sweet. He and I chatted about general goings on in the hospital. He was happy with my mammogram and physical exam results. He asked me about how I was doing on the tamoxifen, and I responded "well". And then he said my favorite words "I'll see you in a year."

Yes you will, because all of this means that I will be around for another rotation around the sun.

Also, this may have been how I strutted out of my appointment:






Tuesday, May 16, 2017

Holy Baked Goods Robin!

So myself, my boyfriend and all the dietitians (and one very generous nurse) really outdid ourselves this year. We went to town baking and candy making. My poor roommate wasn't able to use the freezer for the past month. But all the cupcakes, cookies, donuts, mini loafs, fudge, peanut butter cups and giant cookies was well worth it. 


Here are some glamour shots of all of our hard work 



Here is everyone pitching in

The bake sale is always one of my favorite events of the year. People are very generous with their money, but also in spirit. My mom and bf have heard me rave about how much I enjoy sharing with people during the day that they decided to join me in sling the bake goods. 

The hospital has been promoting my story and many people came up the the table to chat. Two women who work in the hospital told me that when they first saw me bald 4 years ago, they thought I had just donated my hair and that didn't realized that I had gone through treatment until they read about me. I chuckled thinking they obviously hadn't seen me towards the end of chemo. 

My favorite interaction of the day, however, occurred between my mother and a patient family member. (Side note, inviting your mother to work the bake sale, means she tells all the people that you are a survivor out of the cancer center). My mom was chatting with a husband to a patient who asked her what the bake sale was for. She explained that we are Team NED (No Evidence of Disease) and that we were raising money for the Lahey Cancer Center. She told this gentleman that I was a breast cancer survivor out of the cancer center (Four years!). He started to tell my mother his wife's story. He stated that in February she had been diagnosed with breast cancer and had undergone a bilateral mastectomy. My mother asked "How is your wife doing?". The man's face lit up "Thank you so much for asking, she is doing well and won't need chemotherapy, but is about to start radiation". My mother responded with "Ok well with radiation she might experience some fatigue and usually have some skin burning." He asked her how she would know that. She told them how she used to do radiation for the hospital and from my own experience. He responded "I am so glad that I stopped by this table today" and handed her a $20 bill. She asked "what can I get you?". And he responded with something that will stay with her for a long time...

"Nothing, you just gave me everything that I needed". 

More than just a bake sale. Its great to get out there and meet all the other cancer survivors and fighters who stop by the table (especially the woman who bought cookies pre and post her chemo infusion!). 

At the end of the day, we broke every bake sale record. $2,147.85. Damn that one is going to stay for a long time. 

Go Team NED! 

Sunday, May 7, 2017

BCRF Hot Pink Party Boston

The wonderful folks at the Kelly Care's Foundation invited myself and my BF to join them at the BCRF Hot Pink Party Boston for a night of dinner, dancing and celebration of of heroes, fundraisers and a whole lot of survivors.

I had heard of the BCRF (Breast Cancer Research Fund), but was unaware of the phenomenally great work they do. The BCRF is committed to being the end of breast cancer though research. It was founded in 1993 by Evelyn Lauder and has been involved in many breast cancer breakthroughs. These are the people involved in getting herceptin chemotherapy clinical trials rolling. Herceptin has been a game changer for folks with HER2+ breast cancer, as the diagnosis is no longer a death sentence. They have also funded the research to prevent over treatment of early stage estrogen based cancers and helped developed care paths as not everyone needs to have chemotherapy and still experiences the same outcomes. More of the amazing progress this institution can be found here.




Needless to say, once I realized the magnitude of work that the BCRF has done and is doing, we were even more excited to attend. And as you can see (above) it was a great event. They honored a breast cancer survivor, who has also overcome the death of a child and colon cancer after finishing treatment for breast cancer. It was inspiring to hear how she not only continued to get up day after day and continued to support not only her family, but also help continued to help others as they went through breast cancer treatment. Very self less.


It was fun to be part of the celebration of all the great research that they do in the Boston area. The BCRF has awarded more than $7 million in grants this year to research in the region. It was also empowering to be surrounded by so many breast cancer survivors and their support systems. It was amazing to be in a room full of people who understand science and believe that research with be the end of breast cancer. 

The night capped off with dancing and dessert with music by Nile Rodgers. Nile Rodgers is a Grammy award winning composer, producer, arranger and guitarist. And....he is also a cancer survivor. He produced a wide breadth of hits "Le Freak"  and "Good Times" as member of CHIC, David Bowie's "Let's Dance", and Sister Sledge "We are Family". It was a spectacular to dance to "We are Family" with one of it's producer's preforming it with a room full of breast cancer survivors...the line "I've got all my sisters with me". 


What a fun event for an organization that uses 91 cents of every dollar donated toward either research or raising awareness. I'll be excited to see what comes out of the research funded by the BCRF in the future and their goal to #BetheEnd. 

Wednesday, April 26, 2017

#GameChanger

I was fortunate enough to be able to return to the Irish Eyes are Smiling Gala for the Kelly Care's Foundation on Monday April 24th. It is such an awe inspiring, soul repairing, celebration of gratitude and people who are #GameChangers that I was excited to return.

The Kelly Care's Foundation with it's great tagline of "A Playbook for Hope", is a great foundation that funds research that supports Health, Education and Community projects. The foundation came to be after Paqui Kelly (wife of Notre Dame's football coach Brian Kelly) defeated breast cancer twice. The Gala is a celebration of things the foundation has accomplished throughout the year and highlights individuals who make great contributions to the areas of Health, Education and Community.

The folks at Kelly Care's were aware of how inspired I was by Paqui Kelly last year and asked that I participate in the video that proceeded her introduction. I was honored to be able to participate and did my best not to be tongue tied.

Here I am up on the screen at the Gala, trying not to cringe at the sound of my own voice. Part of this video clip was for me to fan girl about Paqui Kelly and how inspiring it is that she took her gratitude about her support and level of treatment she received through her cancer battle and started a world class foundation. The other piece was to help promote their initiative about how everyone can be a #GameChanger. This social media campaign appeals to me because I believe that everyone does have the potential to be #GameChanger and that through work on this little blog, I am one. 

This year's gala paid tribute to the life of Steve McDonald, an NYPD officer who was shot and paralyzed by a 15 year old in central park in 1986. Steve spent his life being a champion of forgiveness and listening to his son and others talk about him, you knew he was an amazing man. 

The gala also honored Pat Quinn of Quinn for the Win, one of the tri-captains in the battle against ALS. He was introduced by the Pete Frate's (another Tri-Captain and well known to those in the Boston area) parents. As a breast cancer survivor, it is amazing to me to think about that prior to the 2014 ALS ice bucket challenge, ALS research had not been properly funded and new strides in treatment had not really been made since Lou Gehrig had the disease. Pat Quinn lives the mantra of Fight Like a Champion. He and Paqui both talked about being part of team's they never chose, but taking an athlete's approach and being an active participant to their new teams. Very relatable. 

The final honoree of the night was Hall of Fame football quarterback Jim Kelly. 
Jim Kelly in his Hall of Fame jacket with Irish Eyes are Smiling Gala Chairman Brian C
Jim Kelly gave an impassioned speech about being resilient and keeping a positive attitude. Jim Kelly also had a quote that will stay with me
Make a difference today, for someone fighting for their tomorrow. 

Whoa. I may have to print that out and hang it up. Talk about #GameChanger.

And then the band Chicago played. Yes, Saturday in the Park was played. Amazing.

I am grateful for the opportunity to attend and be inspired by those the Kelly Care's Foundation honored. I was also grateful for a comfortable dress and not wearing a bra (fancy back to my dress) out in public for the first time post lumpectomy. This was personal win for me and my self confidence.




Tuesday, April 18, 2017

And the un-blinding reveals....

As previously mentioned the PRESENT trial (Prevention of Recurrence for Early Stage, Node Positive Breast Cancer with Low to Intermediate HER2 Expression with NeuVax Treatment) phase 3 of the study was ended because of futility.

As my oncologist and the research RN let me know that when the results were unblinded they would send me a letter letting me know what group I was assigned to.

Drum roll please........

I received the placebo.

I'm not going to lie I was a bit stunned and oddly disappointed. I mean I got stuck in the thigh a fair amount and I even fainted that one time.

And then my brother had the worlds greatest response
"On the plus side it means your body is keeping you cancer free".

Yes, yes it does. Way to find the upside!

Now to hunt for other programs to enroll in.

Thursday, March 30, 2017

So Much On Soy!

A couple of weeks ago the headlines were bold "Soy no safe for breast cancer survivors to eat""Soy may actually prolong breast cancer survivors life" "Soy actually decreases the recurrence rate". I got really excited and were reading on the headlines and the articles.

If soy was somehow protective, I would go back to my edamame, soy milk and tofu (all occasionally) ways. Anything to support nutritional science.

What generated these wonderful headlines? That would be the Study by Zhang et al titled Dieatray Isoflavone Intake and All Cause Mortality in Breast Cancer Survivors: The Breast Cancer Family Registry (DOI: 10.1002/cncr.30615). This study used 13,000 families from the United States, Canada, and Australia. However, because a different Food Frequency Questionnaire (FFQ) was used for Australia, the Australian population was not included in their end analysis. After exclusions, the study involved 6,883 women. Each woman was given an FFQ and each woman self reported their cancer treatment history and ER/PR status of their cancer was obtained for record. The study also used self reported weights and heights (this cracked me up, because I wondered how many people shaved a couple of pounds off, or reported how tall they used to be).

The study looked at isoflavone intake; isoflavones come from whole food soy (soy milk, edamame and tofu). And the study showed that there was a 21% lower all cause mortality associated with high isoflavone intake after following the group of woman for longer than 9 years. Those are good numbers!

However, the biggest key piece is that the reduction in mortality was only for those women who had ER/PR negative tumors and those who were not receiving hormone therapy. ER?PR positive tumors are the most common form of breast cancer and this means that these great headlines about extending survival and decreased risk of recurrence does not apply to most women and none who are receiving hormone therapy.

So I will continue to avoid soy protein isolate and I will likely consider continuing to not eat edamame, tofu and soy milk.

Another study on soy consumption over the lifetime and response to tumors came out in February. Researchers fed rats a high soy diet over a lifetime (to simulate a typical Asian diet intake) and then fed other rats higher soy intake as adults (to simulate a typical Western diet) and the rats were given ER+ tumors. Now, this study was in animal models, which doesn't always translate into humans. The researchers found that high lifetime soy intake was protective against the development of mammary tumors and that those who where lifetime consumers of soy while on tamoxifen had better response to the therapy. However, they researches found that the rats that started consuming soy during tamoxifen therapy or as adults the tumors didn't respond as well to the tamoxifen therapy. The rats that started eating soy as adults and not over a lifetime had a significantly higher tumor burden. (Zhang X et al, "Lifetime Genistein Intake Increases the Response of Mammary Tumors to Tamoxifen in Rats" doi: 10.1148/1078-0432.CCR-16-1735).  Yes, its only an animal model but it s demonstrating that maybe you shouldn't start eating soy later in life for a protective affect.

Bottom line, I am going to continue to not eat soy and work on my overall fruit and vegetable intake.




Saturday, March 18, 2017

Cheese raises breast cancer risk!! (Not really)

This alarming headline clogged my facebook feed this week. Cheese raise your breast cancer risk, but yogurt may be protective. This is based off a study by Susan McCann, PhD and her team and published in Current Developments in Nutrition and a good recap of the study can be found here.

The breast cancer survivor in me's original reaction "What! No, I love cheese. How am I going to give up cheese? Is life worth living without cheese" Yes, it got real dramatic, real quick.

Then the science driven nutrition professional dove in. In this study Dr. McCann and her team took a group of women who had breast cancer and a group of woman who had not had breast cancer and gave them a Food Frequency Questionnaire. A food frequency questionnaire is exactly what it is sounds like, a document where people are asked how often they consumed an item in the past month.

A question might look something like this:
 "In the past month, how often have you consumed 4 oz (1/2 cup) of yogurt?
☑ Never ☑ 1-2 times per month ☑1-2 times per week ☑ Daily

The questions are likely more specific, but you can get the idea.

The main results touted for the study are that woman who consumed a "high" amount of yogurt had a 39% lower risk of developing breast cancer and those who had "higher" intake of cheddar and cream cheese had a 53% high risk of developing breast cancer.

Well, this highlights the issue with nutrition studies. People eat all kinds of food and it's very hard to tease out exactly what is affecting people's diet. If people were only eating yogurt or cheese than it would be easier to say where the correlation lies.

People who eat yogurt, also tend to be people who eat more fruit and vegetables. It is known that high fruit and vegetable consumption lowers an overall risk for cancer. While the researches did correct their results for confounders such as BMI, overall fruit and vegetable intake wasn't included.

Bottom line, no new news. Continue to eat a balanced diet and low fat dairy products is still part of that diet. Consume high fat dairy products (like cheddar cheese and cream cheese) less frequently (not daily) and there is further research needs to be done on the role of dairy and breast cancer.




Monday, February 27, 2017

4 more years! 4 more years!

4 years ago today I completed my last radiation treatment and celebrated through the whole day. It is a tradition that I have continued. I have since thrown myself a Better Off NED party every day on or near the 27th of February to celebrate with myself and all my co-survivors. It's a great little shindig where I make a cake that abstractly looks like a boob and I often put my scar on there. (My boyfriend thinks it's a little weird, but everyone else loves it)

Here's a compilation of boob cakes, with this year's version on the lower right hand corner. I did not get a shot of the inside, it had great layers of caramel on the inside.

I have put in to have off for the day of work for infinity. Having cancer is one of those things that teaches you about the fragility of life and the importance of taking time to celebrate. I am grateful to be able to celebrate 4 years cancer free and hope to have a lifetime more of celebrations.

So, I slept in, did a workout on the stationary bike (4 more physical therapy sessions and then I can run again), danced/cleaned the house to some Bon Jovi and went out for a very fancy lunch with my parents.

My hospital also launched on Friday the new video for the Lahey 5k and the story is a very familiar one.

Please forgive how much of a goober I am. But, I love this event and I am truly grateful for the role that Lahey hospital plays in my life. How great is my mother in this video? 

Off to eat more cake. And celebrate a little bit more. 

Saturday, January 28, 2017

No, no medical resident don't worry about that, my oncologist said I'm just a regular person now

In all my training for the half marathon back in November, somewhere along the way I injured my left hip. I was too determined (aka stubborn) during training to take some time off and have it checked out. I gave it my standard 6 weeks off to see if it would heal, but it did not.

Here is one of the weird things for me, I have rarely had an injury to the left side of my body. I have had multiple (6) stress fractures, all on the right side. My bad eye, on the right. My bad boob, on the right. It's a whole new experience on the left.

Anyways, after attempting to gt back running, cross training and then just plain walking and still having pain in my hip I finally went to the doctor. They told me that I could wait an additional 6 weeks and see my PCP or I could see the medical resident the next day. I chose the resident.

The resident was lovely. Being a resident, however, you could watch her go through her mental checklist based on my symptoms and my past medical history. Bless this lovely little resident, but I nearly stopped her mid questioning to say "No, it is not a bone met". But for once I actually behaved myself and let her finish the line of questioning. I smiled politely through the physical exam and told her about the way the pain radiated and that it felt to be more muscle/tendon pain (and tried to reinforce that years of running I have become extremely familiar with the difference). She looked at me puzzled when I explained that sometimes it was more of a "nagging" pain than a "stabbing" pain and it didn't have the burn that a stress fracture has.

She stepped out (and than back in 2 times to check a couple of items, no I do not drink alcohol nor do I have any changes in my "gait" -likely not a Vitamin B12 deficiency here).

Then the resident's attending came in. He took one look at me and said "I thought it was you!". After all, I am hospital famous. The breast cancer surviving dietitian. The attending physician and I chatted briefly about running (he had finished with a couple of members of team NED at last years Lahey 5k) and about how long I'd been running (high school, college, post collegiate) and was asking me about running in college. He did his exam and then stated "I don't think that it's arthritis, you would be a little young".

"Well, I've been a little young for things before"

"True". And that is how I ended up having an Xray on my hip later that day. The resident was insistent that it was part of a protocol and that she didn't think it would show anything. I reassured her, that I too believed that. She gave me a warm smile.

She called me the next day to let me know that the xray was completely normal. You could tell how relieved she was. I told her I wasn't worried, my oncologist told me I'm just a regular person now. She helped me schedule a follow up with the sports orthopedist and wished me luck.

I got my xray results via my online chart a couple days later and read it just for fun. Normal L hip. Only remarkable is larger than normal stool burden. So...um yeah, more exams letting me know that I'm full of s*it.

And now that I've gotten a little extra dose of radiation and everyone feels better about my hip pain (except for me who still can't run yet), I'll just patiently wait for my appointment in 2 weeks with the orthopedist. And distract myself with the run up to the Patriots in the Super Bowl (the below song was referenced in the pregame piece leading up to the AFC game, that was narrated by the one Jon Bon Jovi)