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.

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.

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)?

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