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)

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 

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!

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. 

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.

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.

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.