CultureJunkie

One Year Later

Here we are, one year later.

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.

Patricia Wrixon, owner of the Salon at 10 Newbury, was another honoree, for her work providing wigs to cancer patients. I have Patricia to thank for hooking me up with Kristen Wiig, and her colleague Kimberly Bruno for keeping my new pixie cut in shape!

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.

Happy Holidays

A special note to everyone who helped me get through this year:

Have a wonderful holiday!

- Stephanie

For Whom the Bell Tolls

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:

It reminds me of the famous passage from John Donne's Meditation XVII (and Hemingway's novel named after it):

"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

Red Badge of Courage

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.

*(sans cowardice!)

Beam me up, Scotty

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!

Made in the USA

It's been 6 weeks since my surgery, and I'm finally feeling back to "normal" (albeit a new normal, where fatigue and random joint pain are routine occurences thanks to my old friends AC-Taxol).

But I've regained range of motion on my left side, am building up my chest muscles again (and have new-found respect for them: you don't realize how much you use them until it hurts to do so! Basically, every time you sit, stand, bend down, reach, sneeze, cough, or otherwise move your upper body), and feeling pretty good about my new - ahem - anatomy.

Blogging about breast cancer has always been an exercise in navigating that fine line between information and too much information (TMI). But the science behind it is quite fascinating, and now that I've gone through a mastectomy and reconstruction I find many people are curious to understand what exactly that means. So here goes: this post is about breast implants. If you think that's TMI, then turn back now!

Mastectomy is removal of the breast tissue as a way to treat breast cancer (and in some cases, people who are at high risk for the disease elect to have the operation prophylactically as a way to prevent it). There are different kinds of mastectomy, and different options for reconstruction of the breast(s). There is also the option to skip reconstruction altogether, and many women go that route. Suffice to say, the decision is a very personal one and I won't debate the pros & cons of either path here. But I will tell you that I had a unilateral mastectomy with single-stage reconstruction (so, removal of the breast tissue on the left side and insertion of a silicone implant, all in one surgery).

Now, most women who undergo reconstruction have a two-phased approach. First, they get tissue expanders, which are spherical, saline-filled implants that have a disc in the middle (at top in the image below). Once it's implanted, you go in weekly and the doctor inserts a needle directly into that disc (right through your skin) to fill it with more saline, slowly enlarging it and expanding the surrounding skin (tissue) over time. The second stage occurs 4+ months later, when the tissue expander is removed and replaced with a silicone implant (at bottom in image below), which you then have for the duration. This two-step process can take about 6 months, however, so it wasn't an option for me (because it would have delayed me getting into radiation for that long). And I'm glad, because I don't think I could've handled the saline needles!

So I had the mastectomy and silicone implant procedure all done at once, which took about four hours in surgery. I had a subcutaneous mastectomy, which means that the surgeons preserved all of my skin, making an incision below the breast, removing all of the breast tissue, inserting the implant, and then sewing me back up. I'll say again how fortunate I am to receive care at MGH, as both of these procedures - subcutaneous mastectomy and immediate reconstruction - are not standard operating procedure at other hospitals. I was very lucky to again receive the "latest and greatest" treatment protocol, and everything went smoothly.

Two things I learned that I found interesting:

(1) In the early days of implants, doctors would tack them down in about 4 spots to keep them in place. But they found that they were more likely to tear around the stitches, so they stopped doing that in favor of letting them move around freely between the skin and chest muscles (!)

(2) It is for this reason that the implants are spherical (vs. say, tear-drop shape to better mimic real breast tissue by being flatter at the top and fuller at the bottom), so that they can move around and always look the same. If they were tear-drop shaped (or other) they would look funny if they flipped upside down!

So this year I will not only recognize Breast Cancer Awareness month, but also the inaugural Breast Reconstruction Awareness day (affectionately called BRA) on October 17th. Haven't heard of it yet? You will: the American Society of Plastic Surgeons is launching a campaign to raise awareness of the historically taboo subject, because even today about 7 in 10 women are not fully informed of their reconstruction options.  They've tapped singer/songwriter Jewel as the spokesperson, and she has penned an inspirational song to raise funds for reconstruction-related research and the charitable care of breast reconstruction patients.

And what of this post's title? I lifted it from a sign in my doctor's office that made me chuckle:

 

GI Jane

I've swapped Kristen Wiig for GI Jane. It's only fitting since I've been on the front lines of a battle this year!

But the good news is (and it is very good news) that my surgeons got clean margins in the last procedure, which means I do not need any more surgery. I just need to heal from the mastectomy and reconstruction (4-6 weeks) and then begin a 6-week course of daily radiation to kill off the remaining cells.

The last procedure went smoothly, and I am healing well: got one surgical drain removed this week, and should get the second out next week. In the meantime, I'm enjoying seeing my hair come back in (the damaged nails have been slower to bounce back, but they do look better, too), and joining the ranks of these illustrious ladies:

Demi Moore in "GI Jane"

Natalie Portman in "V for Vendetta"

Kim Cattrall in "Sex and the City" and Cynthia Nixon in "Wit"

Sinead O'Connor (in her prime)

Stephanie and Lulu in "Battle of 2012"

 

Strength, Surgery, and Baseball Jerseys

"You never know how strong you are until being strong is the only option you have."

My friend Catherine sent me that quote back in February. I don't know who originally said it (it appears to be a popular one on the Web), but it holds particular significance for me now, seven months after my initial diagnosis.

I never thought I could endure the harshness of chemotherapy with all of its absurd side effects, or the subsequent needle localization procedure and not one but two lumpectomies. I nearly fainted the first time I had a surgical drain placed in my side, and I was overcome with anxiety last Sunday night as I counted down to the dreaded mastectomy I'd been dodging all year.

But guess what: I made it through and it wasn't as terrible as I'd imagined.

I mean, it was incredibly difficult to have to go through something like that, and I'm of course dealing with some pain (plus a gag-inducing two surgical drains), but I'm back home, moving around, and for the most part feeling ok.

It was another 5:30am start time at MGH on Monday, where I was the first procedure of the day for my surgical team. I was all worked up about getting the paravertebral nerve block (where they inject novacaine into the nerves near your spine that control feeling in your chest) because although it is designed to reduce post-op pain & nausea, you're awake when they do it. Thankfully, I had taken some Ativan that morning to calm my nerves and they had already begun to administer the anesthesia drip so the last thing I remember is them saying, "OK, roll over onto your belly..." and that was it. No recollection of the nerve block, the subsequent 3.5 hour procedure, or my time in the recovery room. In fact, I only vaguely remember seeing my parents later that afternoon, and was still pretty out of it when my friend Sara visited that night.

So, I made it through with relative ease. The surgeons were able to remove the cancerous breast tissue, salvage my skin, and do the reconstruction in one fell swoop. I won't get the full pathology report back until next week, but all of the doctors are pleased with how things went from a surgical standpoint (and although I still have trouble looking at my reconstructed self, they tell me it looks great. Sorry, Justin, but I didn't go Coco style).

I spent two nights in the hospital, which in some respects was more difficult than the surgery itself: I had an elderly roommate that needed lots of care, which meant a constant flow of traffic through our room at all hours of the day and night (and the nurses have no qualms about throwing on those harsh overhead lights and talking at full volume when you're trying to sleep two feet away!). And then I had my fair share of 11pm antibiotic infusions and 6am rounds.

Thankfully, I had lots of visitors to help pass the time, and they brought an assortment of snacks and magazines and flowers to cheer me (thank you!!!), and I had a fantastic day nurse - Rich - who surprised me with the best invention ever: the Jacki shirt. Designed by a breast cancer patient and tested at Boston's Brigham & Women's Breast Health Center and Tufts Medical Center, it's a post-surgical garment paid for by sponsors and distributed free of charge to breast cancer patients. Unlike a traditional hospital Johnny, which is thin, coarse, and leaves your backside exposed, the Jacki is a soft cotton jersey with Velcro closures for ease of dressing (when you have limited motion) and physical exams. But the best part is that it has several interior pockets to hold the nasty surgical drains! I opted for the incognito All Star shirt, and I'm sure people have no idea I'm recovering from surgery...they probably just think I'm an old-time baseball player.

So now I'm home with my antibiotics and pain meds. I'll go in again next week for a check-up and hopefully get one of the two drains removed, but it will be about 4 weeks until I am healed and can go on to the next (and final!) round of treatment: radiation. But I'm not even worried about that at this point. It really is amazing how strong you can be when necessary.

For now I'm just concentrating on getting my throwing arm back...for Lulu's sake.

7 Days and Counting

Just one more week until my surgery!

And I'm so ready to get it over with. I'm feeling stronger than I have all year, and although I'm quite nervous about the procedure itself (unilateral mastectomy with single-stage reconstruction), I've been too busy lately to think much about it.

In my continuing quest to cram a Summer's worth of fun into two weeks, I've gone to the beach, attended the circus, hit the SoWa Open Market, and did a Paint Nite with friends. I've also gotten my ~4 mile walks in a few times a week. I'm exhausted! Stamina isn't quite what it used to be. But it felt good to get back to "normal" activities.

Here's the Paint Nite crew:

And my masterpiece:

We were all instructed to paint a cupcake, like this (in case you were wondering why I chose to paint a weird, pop-art cupcake). But the room was dark, people were drinking, and of course there were varying levels of experience (it was my first Paint Nite), so it was fun to see what people came up with. And very therapeutic to paint while chatting with friends. I would definitely do it again.

Amidst all this fun I did have one meeting with the plastic surgeon, where I learned all the gory details of the upcoming procedure and listened patiently while he shared the "what if" scenarios (as in, "what if things don't go as planned..."). Hopefully that won't be the case and I'll have a straightforward operation, 2-night hospital stay, and then home for ~4 week recovery, before starting the 6 week radiation regimen.

We'll see what next week brings!

Try, Try Again

About ten minutes after I published my last post, I got a call from the surgeon indicating that the re-excision was unsuccessful and I would have to undergo yet another sugery: this time, mastectomy.

Another dip in the rollercoaster. Only the dip didn't seem so low this time, the news not quite as devastating, because I knew going into it that there was a good chance it wouldn't work. And I hadn't gotten my hopes up.

I've lived with the news for a week now, and I have to say, I'm feeling ok about it. My anxiety in the past had a lot to do with all of the choices that were given to me, none of which were a sure bet and a decision that was mine alone to make. Because there is no definitive cure for this, and the doctors can't say how any individual will respond to treatment or procedures (and probably for fear of law suits), they won't tell you, "you should do this." They just provide general information about recovery times and survival rates and leave the decision  about which procedure to pursue (lumpectomy vs. mastectomy, unilateral vs. bilateral) up to you. It's incredibly stressful.

But now I know I've tried all my options and really only have one  left, so I'm booked for surgery on August 20th. That means I have three weeks to relax and enjoy Summer before going back in for a single-stage mastectomy (left-side only) with simultaneous reconstruction. It should be pretty straightforward, but with a longer hospital stay (overnight, I think) and recovery (4-6 weeks). And two of those damned surgical drains (blech).

And with it, the addition of two new doctors to my team: the plastic surgeon and radiology oncologist. The former has an intense personality and lengthy resume of accomplishments. He's sort of intimidating, but I can tell he's a perfectionist and will do beautiful work. The latter is much more soft-spoken, but equally accomplished (what else would we expect from the recently-named #1 hospital in the nation?!) and oversees a new kind of radiation treatment which I'm now eligible for. Traditional radiation uses photons, which go straight through your body and out the other side, which make it difficult to work on the left breast since you need to avoid radiating the heart and lung behind it. But this new machine - there are only about 7 of them in the country and MGH has one - uses protons instead of photons and can be controlled with much greater precision. Because of the high demand for it, it is mostly reserved for pediatric patients, but they are also using it for breast cancer patients who have mastectomy.

Six weeks of daily (Monday-Friday) radiation will begin once I've healed from the mastectomy &  reconstruction. They are anxious to get to this stage, as it's been a couple of months now since I completed chemo and I can't postpone it much longer. The challenge has been that you need to get all surgery done prior to radiation because it makes the skin less pliable and therefore you can't do reconstruction after having it. But my body has responded well to the last couple of surgeries so I'm hopeful I'll come through this one smoothly, too, and be ready to get onto the next part of treatment soon enough.

For now, I am enjoying the return of my hair (just barely!) and brows/lashes (which literally sprouted overnight and are still growing):

Before Chemo

During Chemo

After Chemo

And I made it out to Cirque du Soleil for my company's Summer outing, and a Girls' Night Out with Kristen Wiig  and my friend Maria :)