Today is my anniversary: three years in remission from breast cancer.
Hooray! 🎉
If you follow me here or on social media, you've seen that I've had an amazing year full of travel and adventure. I am so fortunate to have had these experiences, and as I've said in years past, the Thanksgiving holiday has special meaning for me now.
Sadly, the breast cancer war is still waged all around us; you likely know someone who has been impacted by it. Over the years, countless people have asked for my advice on how to help a friend or loved one who is facing breast cancer treatment, and I repeatedly forward an email with the below information that I crafted soon after my own fight. I decided to publish it here, as a point of reference for the next person who might find it valuable. Everyone's situation is different, but these are some of the things that made my own journey more tolerable. Perhaps they'll benefit someone in your life, too.
There are a lot of pretty, cause-related jewelry options that provide hope as well as a daily reminder that someone was (is) thinking of you. Two lines that I like: Dogeared Make A Wish bracelets on Irish linen, and Bravelets Breast Cancer Awareness jewelry ($10 from each purchase is donated to the cause).
Reading Materials.
Whether to pass the time during long hospital waits, inspire or educate on breast health, or simply distract from heavier thoughts and worries, reading materials of all kinds can be a welcome diversion. I received and stocked up on my share of guilty pleasure magazines (hellooo, US Weekly), light-hearted books, and one serious medical tome in the form of Dr. Susan Love's Breast Book - not for the faint of heart but widely considered the Bible for the newly diagnosed (and utterly fascinating reading). Some of my friends put movies (DVDs) in my care packages and they were great - I'm a huge reader, but there were days when my eyes hurt or I just couldn't focus on text and zoning out in front of the TV was perfect.
Groceries.
You can't go wrong by offering to cook a meal or pick up groceries. Everyone needs to eat! And having someone else pick up/prepare it for you is a welcome treat. Just remember: if your friend is undergoing chemotherapy, s/he may very well suffer food intolerance and nausea. I ate mostly bland things during this time: oatmeal, yogurt, applesauce, chicken soup, smoothies. With the occasional burger or steak thrown in when my red blood count was low.
Head Coverings.
Chemotherapy often leads to hair loss, and pretty head coverings come in handy not only for aesthetic reasons but for practical ones, too - bald heads get cold! Pretty knit or felt caps and cotton scarves are the perfect accessory. Avoid any rough/itchy material which can aggravate delicate skin, and silk which can easily slide off. I found some good scarf options at Headcovers.com but you can also find knit caps and square scarves at regular retail stores.
Skin & Nail Care Products.
Chemo makes your skin insanely dry and delicate, so you go through a lot of moisturizer. Near the end of treatment I was using a heavier, medicated balm on my feet (Carmex, with socks) - it was the only thing that kept them comfortable. Chemo can also really damage your nails, causing them to yellow and break. So, rich lotions and pretty nail polishes lifted my spirits and my appearance :)
Cre-C Shampoo.
Like skin and nails (and other areas of the body that have high cell turnover, like inside your mouth - see below), chemo damages your hair, causing it to fall out. A friend turned me on to this Cre-C Max herbal shampoo from Mexico (also available on Amazon.com) that is designed to stimulate hair (re)growth. I used it regularly in the weeks and months after treatment and I think it works!
Oral Care Products.
Chemo is tough on the delicate tissue in your mouth, often causing sores that make regular, alcohol-based mouth products unbearable. Fortunately, there are products geared towards people with "dry mouth" that work well. I used Biotene toothpaste, mouthwash and gel to keep my teeth and mouth healthy; it's available at most major drug and grocery stores. And for those suffering with mouth sores...popsicles help!
Natural Tears.
I had a lot of eye problems. The chemo dries out your eyes and then they over produce tears in an effort to moisturize themselves. There were days when I had tears streaming down my face and couldn't keep my eyes open because they were burning. But if you put a few eye drops in every few hours it keeps them in check.
Vitamin D.
Vitamin D supplements are really good to take while your immune system is suppressed, as it helps you fight off infection and helps strengthen bones (but definitely clear it with your doctor first).
Recovery Garments.
As if surgery isn't bad enough, you're sent home with these God-awful surgical drains to remove fluids from the wound. Without going into the gory details, they are long tubes attached to your side that must be supported so that they don't fall (or get pulled) out. After my mastectomy, the care team at MGH sent me home in a Jacki All Star Shirt, which not only has multiple pockets to support the drains, but also a snap-front closure for ease of dressing (you can't lift your arms over your head after this kind of surgery), and Velcro sides so that nurses can easily check the drains on subsequent visits. Another nice option, which I purchased for a friend recently, is the Heal In Comfort Recovery Kit. It includes a shirt similar to the Jacki, plus a wrap-around drain pouch and shower lanyard. While these items aren't as fun and glamorous as jewelry or flowers, they are incredibly helpful (and comfortable) for those that undergo surgery.
Again, everyone's situation is different (and much of this is geared toward people who must go the chemo/radiation route), but these are some ideas to show your support. But really, the biggest thing you can do for someone diagnosed with breast cancer is to be a source of positivity and hope.
On the personal front...I made my television debut! My friend Karen Fabian (pictured with me at left) has launched a fantastic new program on the Boston Neighborhood Network called Living Well. In it, she's putting her 25 years of healthcare and healthy living experience to work in order to bring the people of Boston (and beyond) information and inspiration for better health.
The first show airs tomorrow (Friday, June 5th) and the series will have segments on various topics including nutrition, stretching, meditation, technology and health, inspirational stories and activities and actions we can all take to stay healthy. While Karen will present various segments, guests will include teachers, physicians, nutritionists, community leaders, researchers, business leaders, yoga teachers, coaches and others making an impact in the health and wellness industry.
I was so honored to be included in the premiere episode of Living Well, on which Karen asked me to share a bit about my experience with breast cancer.
It was so fun to watch the taping of the entire show, including segments with:
Jose Masso, Director of Active Living and Wellness for the City of Boston (pictured above and at right with Karen) discussing the HealthyBoston/ #BostonMoves initiatives;
Yoga instructor Victoria Smith demonstrating stretches for the back; and
Yoga instructor Barrett Reinhorn sharing information on having a healthy pregnancy
Karen also launched a Living Well Twitter Challenge to get at-home viewers involved; simply use the hashtag ‪#‎livingwellbnn‬ to share your ideas for living well, follow show updates, and/or pose questions for Karen or her guests.
The show will air Fridays at 7am on the Boston Neighborhood Network (Channel 9 Comcast or Channel 15 RCN for viewers in Boston) and via live streaming for those outside of Boston at bnntv.org/tunein.
And before I sign off, I have to comment on the building that houses the Boston Neighborhood Network - the former MBTA Power Station in Egleston Square, which BNN purchased in 2005 and rehabilitated into a state-of-the-art media center that opened in 2007. They did a marvelous job maintaining the soaring arched windows, iron beams, and old pulley systems inside.
Today is a big day in my little corner of the universe: it was one year ago today I had my final dose of radiation and completed my breast cancer treatment. Which means I can now celebrate one year in remission!
It is surreal to go back and look at the photos from last year, which seem simultaeneously like just yesterday and a lifetime ago. For the most part I feel well (assorted aches/pains and Tamoxifen side effects aside), and things are back to "normal." It's not really a "new normal" - unlike some, I haven't radically changed my lifestyle, habits, or the company I keep. Sure, I try my hardest to eat well, exercise, and remain stress-free, but I did all of that before cancer. And I like most people, I still struggle with balancing all of the demands of modern life.
But I've learned that's what life is about: a string of messy challenges, frightening dares, exhilerating experiences, joyous celebrations and yes, mundane details. The key is to take it all in as it's happening, enjoy every moment, and make time for reflection.
And eat lots of amazing meals out with good friends, as I did last night at Kirkland Tap & Trotter (GO. And be sure to have the Housemade Spaghetti with chicken liver cream, pumpkin, and brown butter.)
Celebrating with Maria and Kate at The Kirkland Tap & Trotter
Tonight, I'll celebrate my milestone at the Kenneth B. Schwartz Compassionate Healthcare Dinner, which is timely since it recognizes the efforts of health care practitioners at Mass General Hospital and beyond.
I'll leave you with a quote, as I am wont to do:
It's just amazing how inside our own souls we can lift out so much strength I think it would be enough strength to move mountains at that, to lift our boots up again and go clomping along happy out of nothing but the good source of power in our own bones.
Today marks six months in remission! My, how time flies.
I feel great, and have been enjoying a wonderful 2013 (which is why I've been slow to post). The last few months have been full of art exhibits and concerts; running, yoga, hiking, and snowmobiling; monkey meetings, fundraisers, Chamber dinners and birthday parties; and too many restaurants to count.
I've had fun with family and friends, traveled a bunch for work and pleasure, and have had my hair cut again. Twice.
But most importantly, I've gotten a clean bill of health at all my latest medical appointments. I continue to take Tamoxifen daily, and thanks to recent study findings will continue to do so for the next 10 years instead of the originally-planned 5, but that's a small price to pay to keep Cancer at bay.
Thank you to everyone for the continued love and support. I look forward to a fun-filled Summer, and reporting back at the 12-month mark!
It was on January 27, 2012 that I went into MGH at 9am for a mammogram, and went home at 3pm the same day with a cancer diagnosis. What a blur that day was.
But I will never forget the conversation I had with Cathy Furlani, one of my nurses in the cancer center, soon thereafter. She said, "Stephanie, I wish I had a crystal ball so I could show you what you'll look like one year from now. You'll be like a new woman, and you'll feel great." And she was right!
So when I went to get my hair cut last week (I've had it done 3 times already!) I was thrilled to see that Cathy was among the most recent honorees at The One Hundred, an annual fundraiser sponsored by the MGH Cancer Center that celebrates one hundred individuals and groups who have helped advance the fight against cancer.
The beads around my wrist were a gift from my sister and her daughters, to mark the end of the last year and give hope for the future. They came from Amazima Ministries, a nonprofit designed to educate and empower the people of Uganda through child sponsorship, meals, medical care, spiritual studies, and vocational programs like jewelry-making, carpentry and farming. The jewelry making program is a great key to success in helping women take care of their own families - and then in turn helping whole villages begin to care for their own and thrive.
Closer to home, there is another effort underway to provide hope, this one through music and laughter for cancer patients. My friends Jane and Alastair have two beautiful twin girls, one of whom was diagnosed with Leukemia last year. Alastair is a musician, and during the long months of treatment he found that the brightest moments at the hospital were spent singing and writing songs with his daughter. So now he's putting together an album full of songs about appreciating the little things, coping with hardship, and embracing struggle. There will be a video accompanying one particular song - When I Get Bald - a fun, empowering track about losing hair. He's currently looking for cancer patients who might be willing to share their "bald and proud" photos for inclusion (I sent two!). To learn more, or to donate to the project so that Alastair can make the album a free resource for patients and pediatric oncology programs around the country, you can visit his webpage here.
Today was a big day. I had my 28th and final dose of radiation. And just like that - 300 days after my breast cancer diagnosis - I am essentially done with treatment.*
They have a lovely tradition in the Proton Lab, whereby "graduates" get to ring a bell to signal completion of their regimen:
"No man is an island, entire of itself. Every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friends or of thine own were. Any man's death diminishes me, because I am involved in mankind and therefore never send to know for whom the bell tolls; it tolls for thee."
Donne was of course referring to the old village custom of ringing a bell to inform the community when someone dies, his point being that humanity is interconnected and a loss of one is a loss to all.
This bell is designed to inform the community that one has survived, and they did it with the help of the community. At no time does the phrase "no man is an island" ring truer than when you are faced with a difficult situation, as I was for the better part of this year. I couldn't have made it this far without the support of tons of people along the way, and for that, I am very thankful.
*with the exception of a daily dose of Tamoxifen for the next 5 years
I have now completed 22 radiation treatments (!) and have my red badge of courage* to show for it - the skin on my chest is burnt and blistering at this point, and the left side of my throat is sore where the radiation field crosses it. But I only have 6 more treatments to go!
And in a strange turn of events, I will be sorry to see my treatment come to an end. I won't miss the radiation itself, but I will miss seeing my radiation crew - the group of friendly faces that I've seen every day over the last 5 weeks. It includes all of my radiation techs - Ron, Ryan, John, John, and Scott, plus nurse Kathy, Dr. MacDonald, and Paul at the front desk. And then there are the other cancer patients that are on the same schedule as me - prostate, breast, and pediatric cases - we sit in our hospital johnnies and make small talk every day. When one finishes treatment, we all go watch as they ring the celebratory bell (more on that later), and clap and cheer for them. The strange circumstance of our ill health brought us all together, and in the most uncomfortable of situations we are collectively able to find comfort, and often even laughs.
I've made a life-long friend in my fellow patient, Janeen. We tend to be scheduled back-to-back, and kill time together when they're running behind or the machine is broken (yes...that's happened twice). Here we are after a much-needed spa visit over the weekend:
I also made it out to a special event last week - the annual Kenneth B. Schwartz Compassionate Healthcare Dinner. Ken Schwartz was a healthcare attorney in Boston who got diagnosed with advanced lung cancer at the age of 40. He was treated at MGH, and although he eventually succumbed to the disease, he was so moved by the compassionate care he received there that he created an organization to nurture compassion in healthcare across the country. The Schwartz Center now has a presence in 300 hospitals nationwide, where they facilitate rounds to educate physicians on the importance of providing compassionate care, and each year they host a dinner to recognize those practioners who embody the idea of it. My employer, PARTNERS+simons, has worked with the Schwartz Center for years, and some of my coworkers actually designed the event invitation below. It was wonderful to attend the dinner this year, after having been on the receiving end of this type of care, not only from my radiation team but also my oncology and surgical teams before them. It really does make a difference when your medical team sees you as a person, and not just a patient.
I am finally on my last leg of breast cancer treatment, which consists of 28 radiation sessions administered every day (M-F) for six weeks. I leave work around lunchtime, drive over to MGH, spend about 20 minutes actually getting treatment, and some days have additional meetings with various doctors and nurses. Between the commute there and back, parking, and all the appointments, it's generally 2-3 hours out of my day. Every weekday.
But the exciting part of it is that I'm taking part in a research study on a new kind of radiation - proton therapy, vs. the more traditional photon therapy. Doctors have used traditional photon therapy via a linear accelerator since the 1950's. While these high-impact x-rays work well to kill cancer cells, they are indescriminate and destroy a lot of the healthy surrounding cells as well. In fact, traditional radiation therapy can lead to heart, lung, bladder, and bowel problems (depending on the area of radiation) and sometimes even a new cancer in the body.
In contrast, proton therapy, which uses a cyclotron to produce high energy protons, can be precisely targeted at the diseased tissue only; it has an entering dose of radiation but no exit dose, so it doesn't harm nearby healthy cells. As you can imagine, this is a huge advancement in treating cancers that live near major organs, such as head & neck cancers where traditional radiation might harm critical brain tissue.
Proton therapy has been around for 5 or 6 years now, but the high cost of building a system has limited its use. Today, there are only 7 of these machines in the country, and they have historically been reserved for pediatric patients (in an effort to minimize long-term radiation effects on their young bodies) and head/neck and prostate cases. But in this pilot program at the Francis H. Burr Proton Therapy Center at MGH a team is studying usage of proton therapy on left-side-mastectomy-with-reconstruction patients like me - 26 of us, actually. Where traditional radiation would be difficult for us due to the proximity of the heart and lung, the proton beam can be controlled in a way that they zap the tumor area but not nearby organs and healthy tissue.
The science behind it is remarkable, as depicted in these great illustrations from the University of Florida and the New York Times. This is pretty similar to the set up at MGH (I think ours is a bit bigger, with a 4-story Gantry vs the 3-story one depicted here), and it will give you an idea of scale. Note the tiny read figure in the image that represents the patient in the treatment area. As in this picture, MGH has one cyclotron (which is off limits to patients - too radioactive!) which creates a proton beam that is then fed alternatively into one of three treatment rooms that sit in front of the gigantic Gantry:
Here's a picture I took of my treatment room, Gantry 2. What you can't see is the window on the left that looks out onto the 4-story Gantry sitting behind and around this room, which can rotate 360 degrees around me to position the nozzle perfectly over my tumor area.
And you can't see the nozzle that is lowered down over me to focus the beam on my chest. It is so heavy that they use a crane to put it in place, and they schedule patients who use the same nozzle size back-to-back, so that they can minimize how many times they need to change it in a day.
There are two pieces that sit on the nozzle that are personalized to each patient: a brass aperture that is cut in the shape of their tumor, and a lucite compensator that controls the speed at which the beam enters the body. You see, protons lose energy at an increasing rate as they slow down, so by changing the protons' energy, doctors can get them to stop at any depth they choose. They create this compensator using a 3D picture of the patients' anatomy and tumor (from CT or MRI scans) and shape the radiated area to fit the tumor, using advanced treatment-planning software. When the proton beam is directed through the nozzle, it is compressed into the shape of that individual's treatment area, and is slowed as directed by the lucite compensator (which means the radiation does not go beyond the cancerous tissue). Here are the brass apertures and lucite compensator that were created for me (I have two treatment areas - the breast and lymph nodes):
It's all really fascinating, which makes it a bit easier to go through. And the 4-5 new members of my care team who work in the Proton lab are fantastic. I look forward to seeing them again tomorrow!
