Wednesday, December 21, 2016

The greatest story ever told...yours

I always feel that storytelling is such a powerful tool. It is why I continually blog (sporadically at this point) and take the opportunity to tell my story. My hospital has been great about getting my cancer journey out to the world, but what I truly cherish is that because so many people where I work know my story and saw my bald little head they feel compelled to share their stories with me. 

It happened yesterday. I was happily charting away on a patient and a nurse said "Sara", I looked up and she said to me "You are such an inspiration to me. I am just back to work after a year long battle with breast cancer." We talked about her surgeries, chemotherapy and eventual reconstruction. She asked me about how I was doing on tamoxifen and I was honest with her. I've had minimal side effects and that as long as I keep running/moving that I in general feel ok. I told her in the past 1.5 years my hot flashes have been non-existent. Her face lit up with that nugget. We talked about how her dogs thought she was crazy as she walked them 3 times a day during chemotherapy and that she admits to feeling better with movement. I congratulated her on getting back to work and let her know that the fatigue would improve.  We chatted about how the recommendation for tamoxifen is now 10 years and how adjusting to new medications go. 

I now will look for her in the hallway and share our survivor stories. 

She also asked me my favorite question "How long has it been?" "4 years in February". The mix of "wow" and the distant look in her eyes as she tried to process that she will be able to put that distance between herself and cancer treatment was all to familiar. It made me grateful for all of those who shared their stories with me, even when I couldn't imagine putting 4 years between myself and treatment. 

Happy Holidays.....................to you 

Sunday, December 4, 2016

They see me enrolling...

Despite the PRESENT trial being declared futile, I have not lost my sense of need to be an active participant in the science around breast cancer treatment. That is why I'm enrolled in the Army of Women and friended the Young Survival Coalition on Facebook. Through one of these two places I found the most recent study to enroll in; a study with the Mayo Clinic called "Genetics of Chemotherapy-Related Amenorrhea in Breast Cancer Survivors".

This purpose of this study per their documentation is  "to understand how genetics contribute to the likelihood that a woman may lose her period and/or her fertility due to breast cancer treatment". As medicine moves towards being able to be tailored toward a person's genes I think that looking to see why people have certain side effects while others don't,  is exceptionally important.


This study has a lot less effort/time/blood/scans than the PRESENT study. You can see in near entirety what the researchers are requesting. They wanted paperwork (which I sign and the hospital releases my file), completion of an online questionnaire (not seen above) and a tube filled with spit. Yes, spit. There were even directions to not count the bubbles and continue to produce enough saliva to fill the tube. Then you put the paperwork and saliva in their prepaid, pre-addressed envelopes and send it all on its merry way.

That is it. A tube full of spit, some signatures and these scientists now have data they want to study and saliva to process.  

In 3-5 years we shall see if any correlations can be made.

For Science!

Sunday, November 13, 2016

Feeling Very Grateful

This was a long hard week for many reasons. However, from being a breast cancer survivor, I have found that after the most trying of times the overwhelming sense of gratitude can often fill the void that trying times create. Or at least it can if we let it. 

I haven't had the option to blog for a while because when I am not working or traveling, I've been training. Yes, this 400 m runner's foray into distance running continues. Today, culminated 12 weeks of training. My boyfriend and I completed a half marathon today. 

I had been lamenting as we did our long runs that my long shot goal seemed out of reach (I wanted to break 2 hrs). We had been running slightly quicker each week, but it seemed we were destined to run a very respectable 2:06. But, it wasn't what I really wanted. And as much I continually tried to tell my new training partner that I was ok with it, he knew I wasn't. So, this morning we towed the line and we pushed the pace for all 13.1 miles. Our result: 1:58.10. The runners high from this one is pretty darn good. Our cheering (and driving) squad was pretty excited too-but, you know my parents are biased. 

It also makes me realize that I am very fortunate. I am still able to get out there and run. 

I am very proud of the fact that I am a cancer survivor out of the cancer center in the hospital that I work for. When the PR team asked if I would be interested in sharing my story for a breast cancer awareness section in a local news paper, I said absolutely. I think overall the piece came out great (wrong half marathon, but the gist is there), but I think when you read the whole section, it is impossible for me to not walk away grateful. I'm grateful for how my cancer journey has turned out. I am grateful for the support I had (very happy the bear got some press) and that other's may begin to understand the gratitude I have for the amazing things people have done for me. {I don't believe in everything in that section that was published-particularly GMOs and alternative therapies. I believe in science and the science isn't there on GMOs and not for alternative therapies being the main treatment modality for breast cancer} 

Today I am going to bask in my gratitude. 

Sunday, October 16, 2016

Celebrating Boobtober with a follow up and a birthday

Last week I had my standard follow up with my radiation oncologist. I see her once a year and 6 months after I see my surgeon; this way at least every 6 month a breast exam is down by a professional.

I enjoy seeing my radiation oncologist. She asks me a very important question every time...."When is your next vacation" and she's added in "How is your niece". We chat about these things and how great Skype is. She got really excited talking about Skype. She told me how it was invented in her home country of Estonia and how after they sold it to Google it has made her country rich. Fascinating stuff for a follow up.

She let's me know that everything looks good and that she will see me next year. I could really get behind only 3 specialty appointments a year. (Now, if I could only not get stung by bees or do other random stuff that earns me doctors appointments). 4 years out from diagnosis and my amount of time spent at appointments is rapidly dwindling. It's pretty awesome.

Also, celebrated turning 35 years old this week. Someone said "Happy 29th" in case I didn't care for turning 35 years old. I corrected them. I am happy and appreciate every year I have. I think being a cancer survivor you are happy to tell people your age. You wear it like a badge, like you do being a survivor. You are still here. You are still putting years together and sometimes when you are out seeing your favorite cover band college kids tell you "There is no way you are 35"and you laugh at the "compliment" and realize they have no idea what you have packed in to 35 years of living.

And sometimes you eat a giant plate of coconut chocolate chip pancakes with grilled mashed potatoes. I still need mashed potatoes in my life.

Although nothing compares to my nearly 2 year old niece singing me happy birthday, I have to say my mood can be summed up by Raymond Usher III whom I share my birthday with.


Monday, October 3, 2016

MSABC Boston 2016

Because everything gets abbreviated today, that's Making Strides Against Breast Cancer Boston 2016. Mom and I participated again this year. And it reminded me, how important it is to get out there and show everyone that women under 40 do get breast cancer. In fact, according to the Young Survival Coalition (YSC), 12,000 women under 40 get breast cancer every year.
"Breast cancer is officially an epidemic, with an annual increase in incidence of 3.1%. Young women make up 33% of global diagnoses, and women of reproductive age are dying from breast cancer at an annual increase of 1.8% per year.1  Letting people know that young women can and do get breast cancer just isn’t enough. This year alone, more than 12,000 women under 40 will be diagnosed in the U.S.2
If you click on the above link, you can also get the information on the petition from the YSC to get more  funding for research for breast cancer in young people. You know I can get behind that.

It's amazing at the MSABC when you walk into the survivor tent to get your sash, everyone is so excited to help you celebrate being a survivor. I picked up a pink sash and a sticker denoting that I have been a survivor for 3.5 years. As my mother and I walked through the tent an older woman asked me "How long?" "3.5 years" and then she said the most wonderful thing, the thing that gives me hope "26 years". She then hugged me. And my mother and I moved on to start the walk. My mother asked me if I had ever met that woman before, I told her no. But, hey hugging strangers and celebrating being a survivor all while raising funds for research/support/ and all the other things that the American Cancer Society does, what's not to like?


I was relaying this story to one of my colleagues and she said to me "You need to keep going to those. Imagine at some point you will be able to walk it saying 65 years as a survivor". I like where her head is at.

During the walk, at one point a new survivor ended up behind me. Her husband asked her how she was doing as they approached the end. Her voice quivered and she told him that she was doing great, but the walk was way more emotional that she could have imagined. I smiled while walking in front of her, but I couldn't turn around because all that emotion would have gotten the best of me too.

My mother's favorite part of the walk is the look on people's faces when they see that I am younger than others and have the survivor sash on. She enjoys seeing people's eyes widen, or the men pushing strollers who unabashedly turn around multiple times to try to figure out my age. Most of all she love's seeing me in the survivor sash and feels like I should wear it everywhere I go during Boob-tober or at the very least hang it over the back of my chair at work.

Here's to October and celebrating survivors and pushing for funding for breast cancer research. I look forward to walking with more and more people draped in survivor sashes next year.

Monday, September 19, 2016

PRESENT: An exercise in futility

Sometimes clinical trials go like gangbusters. Sometimes clinical trials lead to new chemotherapies, new treatments and changes the way diseases are treated. And sometimes new drugs show early promise in early trials, but when a large population is tested it is shown to have no value. 

Unfortunately, the once promising Nuevax vaccine, the vaccine used in the PRESENT (Prevention of Recurrence in Early-Stage, Node-Positive Breast Cancer With Low to Intermediate HER2 Expressions With NeuVax™Treatment), was found to be futile. 

Futile; incapable of producing any useful result, fruitless, ineffective, pointless. 

The study has been shut down. What happen was after the ~700 people were enrolled in the study  and 70 DFS (disease free survival) events [ok this is a little tough, DFS events are the opposite of disease free survival they are recurrence, secondary cancers, or all cause death] and Independent Data Monitoring Committee (IDMC) unblinded the study. The IDMC found that the vaccine offered no benefit and recommended that the study be stopped; mathematically they found the study to be futile 

To say that I am bummed is an understatement. I understand that this is how drug development works, and I was so hopeful that this would be the next big thing for breast cancer treatment. However, I'm thankful to not be writing about wishing my chemotherapy or surgery had been successful. I'm trying to keep it in perspective. 

The upside to the study ending is that now I have regular follow up which means a lot less tests, scans and follow up appointments. 

I will no longer need to have MUGA scans, bone scans and CT scans. I will only see my oncologist every 6 months for another year than annually after that and the only annual imaging I will need is a mammogram. I asked my oncologist about needing an MRI and she explained that I am not high risk and those who have positive genetics are those who they do MRIs with. She explained that if that had been what I needed for imaging that I would have been getting it all along with the CT scans because they are looking at different things (the CT scan was more looking for metastatic disease while MRIs are for looking specifically at the breast for new disease that wouldn't be able to be shown on a mammogram).

As the research nurse put it; I'm just a regular healthy person . (But, I'm still going to mourn the futility of being injected with an ineffective vaccine 40 times). Also, they are going to unblind the study and  I will be told what I was actually getting.

In the meantime I signed up to send my saliva (for my genes) to test if there is a genetic link between why people develop chemopause (lack of menstruation during chemotherapy).  Saliva and survey? Easy enough.

What a bummer.

Saturday, September 3, 2016

Triclosan Banned!!

Since finishing my treatment in February 2013 and embarking on the cancer survivor right of passage that is known as "review all the chemicals that are in your life and try to see if they are the source of what just happened to me" I have been avoiding Triclosan. Triclosan has been in antibacterial soap and even toothpastes. Triclosan can potentially create super bacteria and is a known endocrine disruptor. As someone who just took an endocrine disruptor on purpose (my tamoxifen) I would like to put only the ones my doctor prescribes into my body.

Guess who finally got on board that Triclosan shouldn't be allowed in consumer products? The federal government. Yesterday, the FDA banned triclosan and 18 other specific ingredients because they were not any more effective than plain soap and water.

In the press release the FDA, the mention that the data when these chemicals were studied may demonstrate that the do harm. Here is a direct quote.

Consumers may think antibacterial washes are more effective at preventing the spread of germs, but we have no scientific evidence that they are any better than plain soap and water,” said Janet Woodcock, M.D., director of the FDA’s Center for Drug Evaluation and Research (CDER). “In fact, some data suggests that antibacterial ingredients may do more harm than good over the long-term.
 Another case of more is not always better. This may have been 3 years later than most consumer protection agencies would have liked, but the FDA finally got there and it means a lot less people exposed to an endocrine disruptor. Companies have 1 year to get triclosan and the 18 other ingredients out of their products, but by 2018 antibacterial soap should be thing of the past and that makes me happy.


Tuesday, August 9, 2016

The Marking of the Annual Diagnosis Day

Yesterday was four years since the Nurse Practitioner called me at 3:30 pm and said "You have breast cancer". Four years. The same amount of time I spent in my undergrad. The same amount of time I spent in high school. Four years.

It seems forever ago and yesterday all at the same time.

Four years ago, I didn't believe anyone when they said this would just be a blip in the path that is my health. I didn't believe anyone, that after learning I had cancer, that I would ever spend another day not thinking about it. I didn't know what pure gratitude felt like and I had no idea how loved and supported I would feel throughout treatment and into survivorship.

I spent the day, like I have a couple before, doing what my mother and I were supposed to be doing August 8th, 2012, sitting on the dock with my Aunt in Lake Sunappee. We enjoyed the sun, peace and quite and some down time (and my hand is back to normal size!). While sitting quietly in my chair on the dock, the swell of gratitude was impossible to fight. In the four years since I was diagnosed, treated and declared cancer free I have had such a strong army of co-survivors who still would do anything for me. It's amazing to know that that support is out there. In the past four years, I have also seen many individuals who have not had the same happy outcome that cancer journey did. I think of Joanne. I think of Marisa. I think of Mary. I take comfort in knowing they are at peace.

Four years. The olympics are back and I'm watching them in prime time and not the middle of the night because my mind is too full. I may run much slower than I did 4 years ago, but my spirit, my sense of humor and my health are all in tact.

Although I still take it one day at a time, I think I shall now start to look to the future with the classic campaign slogan-4 more years (at the very least)?




Monday, July 25, 2016

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


Saturday, July 16, 2016

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.


Sunday, June 26, 2016

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.





Wednesday, June 1, 2016

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.

Sunday, May 15, 2016

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:

Sunday, May 1, 2016

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)! 

Tuesday, April 19, 2016

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... 

Monday, March 28, 2016

Still NED!!

MUGA SCAN 
Today started out with me needing the IV nurse and it was a good omen. I know, needing someone to place a needle in you, usually not a good omen, but this IV nurse who I had noticed that she wears a pink ribbon on her coat decided to tell me her story today. While being well aware of my "left arm only" need she told me that she ended up needing a bilateral mastectomy and that she decided to go with the arm that had the least amount of lymph nodes out. She slid my IV in without a problem and then told me that was 17 years ago and she's been cancer free since. I told her she was giving me such hope. We chatted about why I needed the IV (routine follow up for the PRESENT study) and I told her the details of the study. I thanked her for her sharing her story with me and took it as a good start to the day.

With IV in hand (well, literally it was in my left hand) I was able to get my PYP injection and then the technetium 99 for my MUGA scan. In preparation to have my heart checked up on and to plump my veins up I drank some extra water in this morning and that would be a decision I would come to regret. As they strapped me down to the same machine that had scanned my bones (and I previously interrupted because I had to pee so bad) it was the same student as before. First two scans are easy, the third and final scan involves my arms over my head. A very uncomfortable position for me to start with. Even more uncomfortable since all the scanning last week hurt my back (34 going on 104). And to add fuel to the uncomfortable fire that was scan #3, I really really had to pee. So much so that you could see my heart rate continue to climb as I tried hard not to squirm or call out. When the student came in I told her and she helped hurry me out of there. She made certain to give me my "I'm radioactive" on purpose card so that I can enter Federal buildings with documentation as to why I'm setting off the geiger counters. Note to self, no flying too close to having all the scans.

The Results
To say waiting for my scan results and things makes me a little cuckoo would be an understatement. But the time had finally arrived for my oncologist to give me the results. After an uneventful blood draw with only 4 tubes and more urine (theme of the day apparently) my oncologist walked into the room and said the greatest line ever

"Everything looks good."

When you've prepared yourself for whatever news is coming down the pipeline you sit there a little stunned at first. And then like when the Grinch realizes the true meaning of Christmas (you know a little late to the game) the perma-smile creeps over you face.

And let me tell you it feels like Christmas morning. I did tell my oncologist a couple of my concerns, my on going back pain (outside of hurting it with scans) and that I really felt the scar tissue under my scar was getting bigger. She inspected the scar and said she thought that if it had changed it was very minuscule and that she was hesitant to expose me to more radiation via diagnostic mammogram and ultra sound (she would do it in a heart beat if they would allow for just an ultrasound). I asked her if I was being a crazy person. 

She said and I quote "You are not being a crazy person".  

Banner day for me here. I'm going to have t-shirts made with that printed on it. We decided that because I already was going to have a mammogram in the beginning of May and have physical assessment with my Surgeon that day, that it was reasonable to wait. I agreed. She said when she went back and read her previous notes that that there didn't really appear to be any worrisome changes. She tole me if I changed my mind, to just get in contact with her. 

She said the my bone scans were great, MUGA (heart scan) was still the best she had ever seen and that there was nothing on my CT scan. She said my labs looked good, iron deficiency anemia has gone away. Yes. And I was cleared for the LAST round of injections

Finishing Up the Vaccinations 
Once I was cleared to have my vaccines the research nurse got the order down to the research pharmacy. I asked her for written copies of all of my scans (as if it weren't true and that it would somehow go away) and we chatted about upcoming vacations and how my niece is doing. 

Then she prepped my leg with alcohol for one last time. There was a new research RN who was there training and she was finding out what a quirky patient I was. We told her about how I request that my injections be done in a square because the engineer in me really liked the order. She gave me a polite nod. And then came time for the shots. 

Damn I forgot how much those stung. But, just very briefly. They do swell rather quickly after. We celebrated my completion of the trial!! Yay!!! 

And then I realized....I totally forgot to ask about what my follow up would be now. I was too excited. She told me she would look at the protocol and email me. (Scans annually, blood work every 3 months) I can totally do all of that. I was way to excited about being NED and finishing injections. 

Now just to document the swelling and redness in the leg for 3 days. It's a small price to pay for what seems to working. Let's keep it going. I want to be that IV nurse telling some other survivor about how 17 years ago I was once a guinea pig for the standard treatment that is the breast cancer vaccine. Life goals. 

And now I realize how tired I am. I think I will celebrate with an early bedtime and throwing myself a party. And baking a cake and dancing to some Bon Jovi. Yup, that seems like a good week long celebration. 


 

Thursday, March 24, 2016

Barium Free Scan Day

Today was a day filled with scans and tests in preparation for the last round of injections of the PRESENT trial on Monday. I have had my crazy pants on for quite some time, but they really escalated this week with the dread of having to drink mochaccino flavored barium. Earlier in the week I put my laundry in the dryer and forgot to turn it on. It is definitely less effective this way. My intake of chocolate has also increased. I may have been eating it to protect against the down trend in chocolate consumption that usually follows mocha flavored barium.

Because last year they wouldn't let me have a CT scan without my urine test, I made sure yesterday to get that done ahead of time. I did this in order to minimize the interruptions as I had fairly tight schedule today:
8:45 am injection for bone scan
9:00 am arrival at CT scan for drinks
10:00 am CT scan
11:15 EKG
11:45 bone scan

The day started out with an IV placement, which is always an adventure for me. There was a student in nuclear medicine and I am sure they saw my age and thought that I would be great patient for her. I told her that I was a left arm only and you could see her be startled a little bit. I pulled up my sleeve and let her know that I am a known hard stick. She turned on her heels, looked at her preceptor and said I don't think this is a good idea. I appreciate her unwillingness not to stick me 100 times. Her preceptor than tried and failed. They were getting ready to call the IV team when my usual nuclear med technician came in. She asked me about how work was going, grabbed a hot pack and had an IV in me in under a minute. She than asked me when I was coming in for my MUGA (heart) scan I told her I would be in on Monday. Only two sticks, starting off with a win. They injected me with the radioactive technetium and I was on my way to the next appointment.

Next up, I headed over to CT scan with the impending dread of what the barium does to my GI tract. Checked in and sat and waited for them to walk in with the the liter of heavy chalkiness. And then something wonderful happened. The CT tech walked in with a 1 liter plastic cup filled with a clear liquid. Now, as I couldn't have anything to eat or drink after 6 am I am super thirsty and wondering if I might be hallucinating at this point. I ask her with the enthusiasm of an 8 year old in a candy store "No barium!?!?" and she responded "Nope, they've phased it out". I checked my wrist band 6 times to make sure I was registered for the correct test and every time it said CT abdomen, pelvis and chest. This was really happening. I tasted the omnipaque (the clear liquid contrast that I had to drink) and it tasted like stale water with a slight hint of pen. But, it was light, it didn't cause me to gag and was easy to drink over an hour. My excitement over not having to drink the barium was hard to contain. The other folks in the waiting room were likely confused by my grinning and happily drinking the giant container of clear liquid.

During the CT scan there was some difficulty with my IV and the tech needed to hold it in place while the contrast was injected, but it didn't infiltrate and I still felt like I was peeing my pants, so we knew it was working. You know what the best part was, I didn't have to drink any barium! They were happy with the pictures and I was on to my next test.

I went up 3 floors to have my EKG done. The EKG tech asked me if there was anesthesia in the test I just had. I told her that the contrast dye just made me feel a little weird. She told me as she was locating all of the clips that her husband was allergic to contrast dye. By the time she was done telling me this, she was already unhooking everything because the test was done. I forgot how fast those were.

Because I didn't have to drink barium (did I mention that) I went and got a snack and started drink water to flush all the contrast out of my kidneys. I may have been a little over zealous with drinking the water. The grand finale of Scan Day was my bone scan. The student was back to get me all set up. She was less timid this time. She set me up for my first scan, which involves the machine being 1 cm from your face to start with as you move along a conveyor as they take the pictures of your bones. As I was watching the machine slowly come away, I started singing in my head, Gloria Estefan



And as I watched my bones assemble on the tv screen (still makes me think of Mike TV from Willy Wonka) I could see me exceptionally full bladder light up the screen. As I tried not to squirm so they could finish the whole body scan, I asked the student that before we did the chest scans if she could let me go pee. After she undid all the straps (yes they strap you down) I sprinted to the bathroom and then came back to get strapped down and have my chest scans. 

And then I was done. No mochaccino burps. Free to drink water without being strapped down. Free to take a nap. 

Now all I have left is a heart scan and a round of injections and then I can be declared NED. Monday at 3 pm will be glorious. 

Tuesday, March 15, 2016

New Heroes

Did I mention that I have amazingly generous friends?



Last night a good friend from college and her husband invited me to attend the Irish Eyes are Smiling Gala in New York City (above is a photo of the two of us at the event). The event is a celebration of  the Kelly Cares Foundation and the major donors and people who exemplify the foundations principals of Health, Community and Education. The foundation was founded by Notre Dame head football coach Brian Kelly and his wife Paqui Kelly.



Paqui Kelly is one of my new heroes. She is a two time breast cancer survivor and through her battles she found that her overwhelming gratitude for the amount of support and the level of health care she received inspired her to create  the foundation to help those who were not so fortunate. The foundation supports causes that support Health Initiatives, Community Development and Educational and Educational Institutions and Programs. These initiatives included the Paqui and Brian Kelly Comprehensive Breast Center in the Saint Joseph Health System in Indiana. I was fortunate enough last night, to be able to meet Paqui. My friends let her know that I was a survivor, and we do what survivors do. She asked "How long?" I replied "3 years". She smiled and said "8 years". And then she said something to me that was so poignant and really resonates with me this month as I battle the FOR.  She said to me "Keep checking those days off, one day at a time". And that is what March has been about as I approach "Scan Day". Checking off one day at a time.

My other new heroes who I didn't get to meet, but were introduced to their story was the Enright family. The Enright family started the KeiraSTRONG foundation to help families of children undergoing treatment for cancer and life threatening illness. Another example of people so grateful for the support that they received during Keira's treatment for Leukemia (she was diagnosed at age 7, she is now 12 and in remission) that they created a foundation to help pay it forward.

The entire event left everyone inspired to be able to pay it forward.  It also ended with a intimate performance by Jon Bon Jovi. Folks, I was 15 ft away from the man. I was freaking out a little bit (nope, that's a lie. I was freaking out a lot and singing along probably very annoyingly to all those surrounding). It was a great way to cap the night.



So, as I continue to check of days of survivorship I will drink out off my new set of glasses every morning and think about how I can pay forward the amount of support and good fortune I have had. (And will continue to rock out to Bon Jovi while I bake). I have so many things to put in my gratitude journal, thank you friends. 



Saturday, March 5, 2016

Keeping the FOR at bay

My bone scan, CT scan and EKG are on March 24th. My heart scan and last round of injection shots are March 28th. My crazy pants have been on since February 24th. Which means sometimes I am normal (well, as normal as I get) and sometimes I am obsessively checking the scar tissue at my incision site. The lead up to scan day also means that my house is spotless. I clean to de-stress. Today I cleaned my house for 6 hours. I scrubbed my tub, cleaned and reorganized my pantry, washed all the throw blankets, and steam cleaned my floors. I also blared some Bon Jovi while doing it. Boogie and cleaning makes for a great workout. 

I also like to schedule myself like crazy leading up to my scans; might as well channel the energy into productivity! In the next 3 weeks I will be having brunch with friends, taking a trip down to NYC to visit a good college friend, going to see a Bon Jovi cover band, celebrating a friend's birthday, throwing a baby shower, attending an alumni board meeting and trying out a new gym. 

And you know what helps even more, when you have great friends who send you this in the mail: 

A card and a magnet with my two favorite quotes. One from Stuart Scott "You beat cancer by how you live, why you live and the manner in which you live" and one of my new favorites that I found this past year "Don't let the FOR (fear of recurrence) ruin your QOL (Quality of Life)". I have hung them on my magnetic chalk board so that I can look at them every day and remember not to let the FOR take over.  


Saturday, February 27, 2016

Better off NED 3.0

Today is 3 years since I finished treatment. 3 years. Holy crap.

I decided to wait to throw my party until I was declared NED at the end of March. I found last year, while I had a great time partying, having to go through multiple rounds of testing I really wanted to celebrate when I was all done. So I'll wait.

But...I couldn't wait to bake. Made a yellow cake with fluffy milk chocolate ganache. And I piped my scar on it.

I mean I still needed to celebrate. And I'm not going to lie, my belly hurts. I may have eaten a little too much cake. For dinner. But I'm celebrating.

I also ate a ham and cheese sandwich today. They were my savoir during chemo, one of the only foods that tasted correct, and one of my main sources of protein. And it was delicious. I think ham and cheese will forever be comfort food for me.

And my parents are taking me to brunch and I may have bought my entire stitch fix (delivery service of new clothes). Because, things need to be celebrated.

Madonna was right. If we took a holiday. Took some time to celebrate. Just one day out of life. It would be, it would be so great.



February 27th will always be NED day for me.

Saturday, February 20, 2016

Cognitively Better than I thought

I feel like my brain doesn't function as well as it did pre-chemotherapy and I wondered if my continued cognitive difficulties-particularly word finding when fatigued, could in fact be blamed on chemo/tamoxifen. Well, apparently I am not the only person who wondered this as a team of researchers enrolled 170 women in the Los Angeles area in a 1 year study. Ganz et al recently published the study "Impact of Adjuvant Endocrine Therapy on Quality of Life and Symptoms: Observational Data over 12 Months form the Mind-Body Study" in the Journal of Clinical Oncology. This observational study followed woman in 3 groups: No Endocrine therapy, Tamoxifen and Aromitase Inhibitor (AI). There was a significant difference in the age of the woman in the AI group over the tamoxifen group, as expected. AI is used in postmenopausal patients.

The authors looked at patients after primary treatment (enrollment), 6 months into endocrine therapy, and 1 year into endocrine therapy. The study found during enrollment and one year later that all breast cancer patients had significantly worse quality of life (QOL) scores than a control group of concurrent healthy woman. Well that is a little bit depressing. But regardless of type of endocrine therapy it was noted that even one year after the completion of primary treatment (being surgery, chemo, radiation or any combination) continued to have sleep disturbances, fatigue and cognitive issues. Those are some pretty big items that are going to affect your QOL one year out.  I think the most important finding of this study is best described by the authors as follows:
Adjuvant chemotherapy contributes significantly to greater symptoms in the year after primary treatment, and combined with ET (endocrine therapy), is likely responsible for the failure of some chemotherapy related symptoms to resolve. 
Yikes. I hope that this is the first of many publications from the authors and that they continue to study if endocrine therapy continues to affect folks for the duration of their endocrine therapy. But, you know people are only on these treatments for 10 years.

The statistically significant results that this study found was that both the AI and tamoxifen group had significantly more cognitive problems than the no ET group, with AI patients report significantly more cognitive problems. Interestingly, the tamoxifen group after a year reported significantly more bladder issues than both groups. I won't go into further detail, but I will say that I can attest to that. Both ET groups had a higher rate of hot flashes than the non-ET group and the AI group was statistically greater than the tamoxifen group. The AI group also had a significantly high rate of musculoskeletal problems than either group.

So, it is scientifically proven that at least in my first year after treatment my brain didn't work as well as it used to. We'll see if that can be extrapolated out over the years of treatment. However, in my own independent study with a sample size of one, I would say my cognitive function might be doing better than I thought. I took a certification examination in November for which I studied by reading 11 textbooks (2 of which I had previously read) and just found out that I passed and earned a couple more letters after my name.

Perhaps the cognitive difficulties decrease after the first year? I'll keep my independent study going because I will have to take at least 2 more national exams for certification during the remainder of my time on tamoxifen. Hopefully, I will continue to have positive outcomes.


 Source: Ganz, PA, Peterson L, Bower JE and Crespi CM. Impact of Adjuvant Edocrine Therapy on Quality of Life and Symptoms: Observational Data Over 12 Months from the Mind-Body Study. J Clin Oncol 34. DOI: 10.1200/JCO.2015.64.3866. 

Monday, February 8, 2016

Sucralose, downgraded to avoid!

I distinctly remember when Splenda (Sucralose) came out. My mother bought a lot of it. I baked a pecan pie with it. Then I did some research into it. Sucralose replaces a couple of hydroxyl groups with chlorine molecules. Chlorine. Like the stuff you put into your pool. But, that wasn't enough to get us to stop drinking beverages with it. It was enough to get me to stop baking with it.

Then in 2013 the Center for Science and Public Interest (CSPI) in their monthly publication Nutrition Action Newsletter released that an Italian institute, Ramazzini Institute, evaluated the additive and it has been linked to leukemia and blood cancers in male mice. Yes, mice are not humans, but that was enough evidence for my mother and I to completely cut it out.

Now, the Ramazzini Institute has finally published their study in a peer reviewed journal that details out how exposure over time can lead to increased risk.

Although CSPI states that the risk of over consumption of sugar (obesity, heart disease, diabetes) is greater than the cancer risk from sugar substitutes, I think I'll continue to avoid it. I'll add in  those on the CSPI chemical cuisine avoid list too.

Now, if I could just cut down on the sugar....(the battle continues)

Sunday, January 31, 2016

Practicing the art of comfort in, dump out

I have blogged a couple of times about the great LA Times article on how to be a comfort to people and not say the wrong things in hard situations. For a refresher, here is the great Op-Ed piece by Susan Silk and Barry Goldman.

Over the past couple of weeks I have found and witnessed that it is often against people's first reactions to practice comfort in, dump out. People sometimes value their own pain over those who are in those inner most rings and it's really hard not to put yourself into the center. It really is ok to not say anything at all, especially if you don't know what to say. Never is this more on display than at a wake or a funeral.

My boyfriend's mother passed away from pancreatic cancer a little over 2 weeks ago. It's a really sad way to meet someone's entire extended family. For those who were just outside the inner circle (the inner circle being: my boyfriend, his dad and his brother) for the most part people were practicing comfort in. My main job was to give my bf a dump out ring and offer comfort in. It involved me biting my tongue when one relative decided to tell us about his theory that a cure for cancer exists and that it's a global conspiracy between big pharma to not release it. Being the "dump out ring" meant it was also my fault that pants don't fit, sweaters shrank and shoes just look stupid. Practicing comfort in can also sometimes mean that you buy a brand new winter coat because your person in the inner circle has become so fixated on it that it becomes a point of anger. A quick trip to Macy's and you get a smile on a face for the first time in weeks. Not all things are that easy. Sometimes you cry together in the grocery store, or you have to just listen and not try to fix during a 3 hr rant about how much the universe sucks right now.

After the funeral my boyfriend's father told me that he couldn't imagine what I went through with breast cancer. I told him that compared to everything he and his wife had been through that it wasn't even on the same level. He said his two sister (both concurrently in treatment for cancer) said the same thing. People often preach that cancer is cancer. There are some universal experiences, but there truly are different levels. I was never faced with writing my own obituary or picking out the outfit I wanted to be buried in. I didn't have to go down those roads. I hope to not have to for another 60 or so years.

I will forever be grateful for being given the chance to get to know my boyfriend's mother before she passed. It will always make me sad how short our time was, but for right now that's something I'll only share with the next circle up.

Rest in peace Joanne.

Tuesday, January 5, 2016

A little follow up and a little research

Yesterday, I had my Larry Bird (33 month) follow up for the PRESENT study. It's just blood work, urine and physical exam. You know, the usual. But, what is super exciting is that I am at the 33 month mark for the clinical trial. The 3 year clinical trial. I was given the date of my scans (CT, Bone, Heart, Mammogram) and the date of the last round of injections. Next month I will celebrate my 3 years being NED. Wow.

My follow up was uneventful. I am still Iron deficient. No one is worried. I've been eating less meat and I've been running. Not uncommon. I'm still not deficient enough that I have to take iron supplements or have further tests. So a hamburger and some Grape Nuts (highly fortified cereal) will be in my future.

While riding the bus home from work, smiling about good blood work I came across an article stating that sucrose (sugar) consumption had been linked to breast cancer. My dream bubble filled with cookies shattered into a million chocolate chips. I then hunted down the research study.

The article I read was siting the research study by Jiang et al, A Sucrose-Enriched Diet Promotes Tumorigenesis in Mammary Gland in Part through the 12-Lipoxygenase Pathway, published in the January 2016 edition of Cancer Research. Basically, the group at The University of Texas/MD Anderson took mice who had been injected with triple negative breast cancer cells or breast cancer lung mets and then randomized the mice varying levels of sucrose enriched diets. The control group received 0 g/kg of sucrose, then 62.5 g/kg of sucrose, 125 g/kg, 250 g/kg and 500 g/kg. The study found that those on the higher sucrose diets (125, 250, 500) had an early onset of tumors although no information about the statistical significance is stated. The statistically significant results that the study did find were that the mice on the high sucrose diets had larger tumors than the control (no sucrose) and had a significantly greater number of lung met tumors. Therefore this study did show that the inflammatory pathway (12-Lipoxygenase as referenced in the study title) which is stimulated by the ingestion of sucrose may play a role in the growth and spread of breast cancer tumors. However, the authors admit that the knowledge on the pathway that was being studied was incomplete. It also was testing triple negative breast cancer (that without hormonal markers). And it was also mice. And the results of the mice fed 62.5 g/kg were not mentioned.

Very interestingly, the mice on the higher sucrose containing diets did not gain statistically more weight than the control mice. Therefore, overweight-a known risk factor for breast cancer, cannot be the cause.

What does it mean? Well, it is difficult to ascertain what the results in a human will be from animal studies. Also, the mice were already given breast cancer so it does not address sugar consumption and the cause of breast cancer. It does however give me pause coming off the holiday season were I definitely over indulged in the sweets. It also makes me pull up my dietitian boot straps and start working towards getting back to the American Heart Associations goal of 24 g of added sugar. Which, I have tried to do every year as noted by my post from 2014. But, when I look at today I only had 12 g of added sugar. So, it can be done.