Blogging with one hand

I have a long history of exaggerated reactions to bug bites. Every year from first grade through 6th grade I would get bitten by a black fly on my eye the night before class pictures. Then there would be a photo of me with my glasses barely able to make it over my swollen shut eye. Because of the over-reaction I have it is why they had to do a dose reduction in the PRESENT trial. Apparently my super, duper quad was not the goal of the trial.

On Saturday while waiting for a friend sitting on my front porch a bee decided my finger was a predator and stung it. (Side note, those injections for PRESENT really did feel like bee stings). My middle finger instantly swelled. However, knowing that swelling is just what I do, I did the regular; ice, benadryl, and NSAIDS. Well, that was fine and dandy, but the swelling didn't stop. My finger doubled in size, turned hot pink and spread into my knuckles. And then this morning my elbow was also pink. Uh oh.

By 9 am I was in to see a PA whom I hadn't seen before. He took one look at my hand and said "Well, looks like you just bought yourself some time off and some IV antibiotics". Damn. He asked my why I waited so long to come in and get checked out. I explained my history of exaggerated reactions and that I was just trying to wait it out. He asked me how well that worked out for me.

Next up comes an IV in my hand for at least the next 2 days. The IV RN who puts my IV has put in a couple of them for my MUGA scans and we chat about my bee sting. Then in comes in an RN to give me the IV antibiotics. She is befuddled as to why the IV RN put the IV in the same arm as where I had the bug bite. I explain to her that I am a "left arm only" and she asked if I had a mastectomy or lumpectomy, "Lumpectomy with sentinel node removal". She looks and me again and says "unbelievable". She asks me my date of birth again and tells me I look 22. I told her today I will take it (I had slept for maybe 3 hrs because of pain and itching in my hand) and was not looking my best.

So I'll go back to the hospital I'll go tomorrow for more IV antibiotics and until then this how I'm hanging out at home until then

Thoughts on the Moonshot

Back in October, Vice President Joe Biden announced his Cancer Moonshot; how he was going to meet with researchers and encourage collaboration in order to accelerate findings of cancer cures. Biden has been spurred on since the death of his son, Beau, to a brain tumor. Part of this initiative is to attempt to get a decade’s worth of research development within a 5 year period. Many people have taken exception to VP Biden calling for a Moonshot as they feel this conveys a false pretext as research results don’t result in large leaps in knowledge, but often small increments.

As a cancer survivor, I love that Biden called it a Cancer Moonshot.  The word moonshot conjures the image of President John F. Kennedy standing at Rice University inspiring the country with the importance of space exploration. When I heard Biden call it a Cancer Moonshot, I could hear JFK in his Boston accent say

“We choose to go to the moon in this decade and do the other things, not because they are easy, but because they are hard”

Curing cancer would be incredibly hard. Doing 10 years of research development in 5 years would be hard. But, these are initiatives that we must take on, that we must work towards and needs collaborative effort. That is why I love that VP Biden called it a moonshot.

As a cancer survivor, I feel that my role in the cancer moonshot is to continue to enroll in trials, send my blood and tumor out for study and support the research effort by continuing for follow up with the PRESENT trial.

Part of the biggest initiative in the cancer moonshot is the development of immunotherapy-using the body’s own immune system to fight cancer. This is part the reason why I was so drawn to the PRESENT trial.My friends at The Mesothelioma + Asbestos Awareness Center sent along a great infographic that explains the moonshot and immunotherapy beautifully. If you want to learn more about the rare cancer they raise awareness for, head on over to their mesothelioma page here.

Thank you Mr. Vice President for starting the Cancer Moonshot. Thank you for choosing to do what is hard. I am one inspired American and will continue to participate in the PRESENT trial and hope that vaccines and the use of immunotherapy will become the standard in the fight against cancer.

Lahey Health 5K Cancer Walk and Run 2016

Yesterday was a perfect summer day. The temperature was in the high 60's, low 70's around race time and the turnout was phenomenal. Team NED has never been so large in numbers or in spirit. And yet somehow I came home without a photo of the team...team captain fail.

 The race itself was great, it is much easier to run without a belly full of buttercream frosting! I ran better than I thought (can still get under 8 min/mile for a 5K). But, what was so great was all the people out there in the Team NED tshirts. My parents, my boyfriend, my good friend from elementary school, her sisters and their children, my good friend from middle school, my track teammate from college, her husband and their children, and a couple of great Lahey Dietitians and Speech Language Pathologist thrown in for good measure.

My sister in law and brother organized an amazing turnout of virtual runners online. I got to spend the rest of day with a constant stream of updates from folks supporting Team NED and going for runs from Arizona, Colorado, Ohio, Texas, South Carolina, and Pennsylvania (a strong presence in PA).

 How great is that? Support from around the country and lots of people going for a run!

Because of all the Team NED participants, our bake sale, and generous donations from family, friends, and the Kelly Care's Foundation Team NED raised over $3,600 for the Lahey Cancer Centers. This, I think is the most money the team has every raised.

I am grateful for everyone who came and out, those who virtually ran and all those who donated.
Thank you for making yesterday such a great day and having an excellent celebration of all things NED.

Naked Toe Nails

I have painted my toe nails since I started running competitively (since I was a freshman in high school). I have some pretty ugly runner's feet and have long had weird or missing toe nails. Sometimes when a toe nail would fall off, I would paint one on with multiple layers of nail polish and no one would be wiser. I would occasionally go the winter months without polish on my nails, but for at least 9 months out of the year there would be some color on there.

Post chemo, I sill had black spots in my fingernails even a year after treatment; for almost an entire year I painted my finger nails too. During this year, I was investigating all of my food sources looking for potential causes of harm, looking at sunscreens and lotions, handwashes and toothpaste. It never occurred to me to look down at my nails.

Last October, the Environmental Working Group (EWG) in collaboration with Duke University released a study using 26 women (small number, would have like to see more than 30) on chemicals in nail polish. In particular, the study was looking at Triphenyl Phosphate (TPHP). TPHP is suspected to be an endocrine disruptor. This study tested the urine of the 26 woman after they painted their nails and found an increase in the TPHP levels within half a day. That is a pretty short turn around to be able to find it in the human body. TPHP is also the same chemical used as a fire retardant and is used more in polishes that are chip resistant.

The EWG compiled a list of all the nail polishes that contain TPHP here. Knowing that there are possible endocrine disruptors in cosmetics does give me further pause before I put anything on (which is a very rare occasion anyways). Knowing that I was spending a week on vacation where I spend most of my time in bare feet, I let my feet stay ugly. I threw out all 24 bottles of nail polish prior to vacation. It freed up a whole drawer. Maybe busted runner's feet will become the next big thing for summer? A girl can dream. But, for now they will stay unpainted.

Squished and Cleared

Thursday was mammogram day. Always a pleasure. I made certain to not put on deodorant and wear a cotton shirt for my 10:15 am appointment. It was a busy morning at work, so I was running around trying hard not to sweat.

I managed to not be stinky by the time my appointment came. The volunteer who called my name to bring me into my appointment was likely about 80 years old. When I stood up she looked surprised and asked me to verify my birthday a couple of times. She realized I was a repeat offender when I told her I hadn't put any deodorant on for the test.

I put my pink johnnie on and sat in a room full of anxious women. What I realized was I was not one of them. I was not anxious. After having all of my testing in March I felt pretty confident that this was just another box to check off. I was not looking forward to it, but I was not concerned (which is unusual for me).

They called my name, I have a new to me mammogram tech and I tell her that I have markers in both breasts. She is reading through my sheet and states "I see you didn't check of the family history or any genetic markers, how...why....just some bad luck..." and she trails off at the end of the sentence. I think my age and history has thrown her off a bit. She is not the friendliest of techs, continually telling me to move my feet and getting frustrated with where I am placing them. I really wanted to tell her "look, I have my face pressed up against a plastic shield, I have my barely size "A"s inside your vice (which at one point had 13.5 pounds of pressure to flatten them), could you just say please!". But I didn't, mostly because I can't really breath, never mind make sentences while they take pictures. Friendly or note, she got great shots on the first try; only 3 vice grips per side. The radiologist cleared me to go and I went up 4 floors to see my surgeon.

My surgeon walks in and says "Can you believe it's been 3.5 years since I did your surgery? That's crazy". That fine surgeon is an understatement. Let's keep those years piling up. I tell him that myself and my oncologist had been worried about some thickening at my scar. He does the physical exam and tells me that it is just natural surgical changes. He lets me know that if I do feel like it is getting bigger than to come back and see him and he'll biopsy the site. However, he feels like he doesn't need to see me until next year. How's that for piece of mind? I'm pretty excited.

As per usual I was sore the next day from being in the vice. One of my colleagues sent me this in honor of the day:

Bake Saling!!

This past week was one of my absolute favorite days at work. Bake Sale Day. As dietitians my lovely colleagues and I love to bake. A lot. And then when you add in for a cause, we get a little nuts. Above is a photo of me hamming it up at 6:45 am as we were setting our table up. 

Here is a wide shot of our table and all it's glory: 

That is a lot of great stuff. We were again raising money for the Lahey Health Cancer Centers. Our online email weekly newsletter ran a little story on me and my breast cancer journey through Lahey and helped promote our bake sale to the hospital. It was really great of them and many people through out the day stopped by to congratulate me on continuing to be a survivor and a couple even asked me if I was Sara. It was great. 

However, two visitors to the table really touched my heart. 

The first told me she was a survivor out of the Lahey cancer center and how proud she was to see us out there. I told her I was a survivor too and we exchanged congratulations. She bought her baked goods and left with a giant smile on her face. We each had a reminder of the gratitude that comes with being a survivor. That, and she had also bought one of the giant chocolate chip cookies I had made. 

The second visitor was my absolute favorite. She was decked out in pink and black with a baseball cap. She had just the slightest hint of peach fuzz underneath. She came to the table and asked what time we were there until. I told her 3. She said "Great, I'll be back after my treatment". I waited patiently for her to return. When she did, I asked her how her infusion went. She told me "I"m used to it by now. This is my 3rd cancer, and unfortunately this time it's not curable". She then went on to tell me how she used to do bake sales to raise money for the cancer center herself and how much she missed doing them. She was grateful that we were out there and was hopeful to see us again. 

She is the reason we were out there. She was the reason that I decided at 5 am to throw an additional batch of cookies in the oven because I felt we needed just a little bit more. Even though I had already made 3 dozen donuts, 2.5 dozen peanut butter cups, and a couple dozen each of blueberry muffins, oatmeal raisin cookies, giant chocolate chip cookies and very carrotty carrot cake cupcakes I knew I could squeeze in a couple dozen more. 

My colleagues fully understand how important this fundraiser is. You can see the amount of work and effort put in. And we raised $1,084. With baked goods. I'm still floored. 

Go Team NED (No Evidence of Disease)! 

How to Party NED Style

With testing and good results behind me, it was time to party. I've been delayed in posting this, because since I had the party and the relief of the results I've found I really like to sleep, a lot, right now. A fun bought of laryngitis also added into the mix didn't help.

Here's how to part like your NED.

Step 1) Be overwhelmed with the gratitude that comes with a clean bill of health
Step 2) Boob cake

This is a S'mores cake. I decided that it was appropriate because it is irradiated, much like my boob. Ok so not really irradiated, but rather flame toasted, but you get the idea. (Not to toot my own baking horn, but this cake was delicious. My completely unbiased boyfriend said it's the best cake he ever had. I'm holding him to that).  

Step 3) Invite all your co-survivors and put out a spread for them 

And because you have amazing co-survivors and an amazing support system these fine folks send you flowers like those seen behind the boob cake, or they make things like these: 

These are mammo-grahams. They are almond paste smooshed between graham crackers. They are hilarious and delicious. 

Step 4) Have a great time catching up with everyone and catching your breath. It's not ideal to live your life from scan to scan, but you sure can cram in a whole lot to a year. 

I gave myself a little break from researching breast cancer stuff to give my mind time to quite down. It's now primed and ready to take a look at all the fun stuff out there about endocrine disruptors, pesticide residue on food and some of the new testing coming out for breast cancer. Getting ready to dive in! 

But, first maybe a quick nap...