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. 

#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.

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.

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.

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.

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. 

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)