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!

Implants

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:

Made in the USA

 


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 gi jane
Demi Moore in "GI Jane"

Natalie
Natalie Portman in "V for Vendetta"

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

Sinead-occonnor
Sinead O'Connor (in her prime)

Crew
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:

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And my masterpiece:

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CupcakeWe 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
Before Chemo

After
During Chemo

Brows
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 :)

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The Re-excision

My surgery went smoothly on Wednesday, although I'm hesitant to even comment on it until I get the full pathology report next week. But here's how it went:

I arrived promptly at 5:20am (along with 33 other people checking in or accompanying loved ones for surgery at that hour!) and was taken to a room where I changed out of my street clothes and waited for an hour before heading down to surgery. No bed in the room (bummer, because I would've enjoyed going back to sleep at that hour), just a wheelchair and a straight-backed chair from which I watched the local morning news (endless coverage of the Southie woman who attempted to ride up an escalator in her wheelchair).

They finally took me down to pre-op, and I was remarkably calm (for me!) while meeting all the surgical staff and hearing about their plans. I don't even remember doing this - or seeing the very cold, brightly lit operating room - last time, because I had so many sedatives in me (remember, last time I had to have that needle localization procedure first).

But soon I had an IV in my hand, and next thing I knew I was waking up in recovery, having some Lorna Doones and ginger ale. The surgery was - dare I say - easy, with the biggest complication being a nearly unrelated one: they covered my eyes in surgery (who new?) and I had a bad reaction to the tape they put on my face, leaving me with two black eyes (it's since turned to more of a red rash).

The surgical site is a bit sore, and I'm tired, but overall doing pretty well. I even got out for a quick visit to Cider Hill Farm yesterday.

I should hear the results of this latest procedure by the end of next week.

 


Next Steps

I had my week of fun, now back to business.

Last week I met with four different doctors to hear my options for moving forward: my surgeon, oncologist, radiology oncologist, and plastic surgeon. I was absolutely inundated with information, not only from them but from my own research, too (the "Bible" for breast care, and a handful of women who were kind enough to share their own experiences - thank you!).

I'll spare you the gory details (the science around mastectomies & reconstruction is quite fascinating if it's not in fact happening to you) and cut to the chase: I've elected to try a re-excision in an attempt to get clear margins. Basically, the doctors were really pleased with how my body responded to the lumpectomy (healed beautifully...you wouldn't even know I had surgery!) and presented this less invasive option to me last week.

So I go in again on Wednesday, when my surgeon will open up the existing site and remove another layer of cells in hope of getting a clear margin (2mm or more of cancer-free cells around the border of the specimen removed). There is a 50:50 chance that this will work; if it doesn't then I will proceed with a single-stage mastectomy next month. But the re-excision should be relatively easy - a one week recovery and no surgical drains! In either case, I still need to proceed with 6 weeks of radiation and 5 years of Tomoxifen once surgery is complete.

I'm hopeful that the re-excision will work, as I'm ready to get on with life!! I'm feeling well these days - my appetite is back in full force (although I'm definitely more mindful of what I eat, and I am the lightest I've been since College) and my hair/eyebrows/lashes are slowly coming back. I still tire easily, and my fingernails and toenails are a mess (apparently the worst of it hits them one month after chemo ends) but nothing a little polish can't hide.  

I got outside for a bit today and walked the new pedestrian bridge connecting Charlestown's Paul Revere Park  to Cambridge's North Point Park. Here are a few pics:

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Heading into Paul Revere Park

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Crossing under the Zakim Bridge into Cambridge

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Arriving at North Point Park

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Enjoying the scenery

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A happy local






Time Off

Hi, Everyone -

Just wanted to give you a quick update on things. Everything seems to be healing well: I finally got that nasty surgical drain out (after two weeks!) and am doing exercises to hopefully regain full range of motion in my left arm. I'm still in a bit of pain, and my fingernails are suffering the post-Taxol effect, but I don't have any other side effects and I have a tiny bit of hair growing back on my head!

But as I said in my last post, I was anxious to take some "time off" from Cancer, and spent the last week "living" again. I returned to work, visited with friends, published a blog post on Charlestown Patch, and took full advantage of all the festivities taking place in Boston this week - Navy Week (celebrating the Bicentennial of the War of 1812) and the annual 4th of July Harborfest.

Here are a few of my favorite photos from the week (see the full set on Flickr here):

10
Ahoy, Mate!
32
Old Ironsides
29
The Blue Angels

This week, I plan to talk to a few more survivors about their experiences (specifically with mastectomy) and gather my list of questions for next Monday's meeting with my surgeon and oncologist. I should know more about next steps then.

Happy 4th!


Reality Bites

The past week has been an emotional roller coaster, full of highs and lows.

First, the high of getting through surgery with relative ease. Then, the low of dealing with a surgical drain and the pain that arrived once the anesthesia and pain killers wore off. I have limited use of my left arm, can't lift or carry anything over 10 lbs, can't sleep on my left side, can't move too quickly, or pick up the dog. I also can't look at the incisions because it makes me queasy, but I've been told my surgeon did a remarkable job, I'm healing well, and will likely have minimal scarring from the lumpectomy.

Next, the high accompanying the kindness of friends and strangers alike. I've received all kinds of Get Well wishes - balloons, flowers, a fruit basket and teddy bear - that have brightened our home and lifted my spirits.

Reality Bites Reality Bites

Reality Bites

I even received a lovely Get Well necklace from the girls at Mint Julep, a great boutique in Brookline. I had purchased a dress there recently which ended up having a small tear in it. When I brought it back they graciously offered to replace it with a new one that would be shipped from the manufacturer. I casually mentioned that they needn't rush because I was going in for surgery the next day and it would be weeks before I could return to get it. They were kind enough to not only ship the dress to my office, but include a get well note and necklace with it.
So I was on a high, thinking that getting this drain out would be the last gruesome procedure I'd have to endure, and while it didn't come out this week as I'd hoped, it will surely come out early next week and then I could move on with healing.

And then I received a call from my surgeon, and with it, a new low:

The pathology report came back, and the cancer had spread in a way that prevented them from getting all of it. While the main mass did shrink fro 4.6 cm to 1.5 cm, they found numerous other small, cancerous cell throughout, and were unable to get clear margins (meaning that the cancerous cells extend to 0.1 cm from the top, back, and side of the specimen the removed, an indication that they likely exist beyond that area). They recommend a mastectomy, to be completed at the end of July after I have healed from the last surgery, followed by radiation.

That's all for now. I think I'm going to take the weekend off from Cancer, and then resume another cycle of research/questions/debate next week. Thank you for all of your support thus far. I was hoping that this post would be the one where I say all the prayers had been answered, but we can't give up just yet!

 

 


Easy Peasy

Surgery is complete! And despite my anxiety going into it, everything went smoothly.

I arrived at MGH a little before 6am (a big thank you to the special folks who sent a car service for me) and promptly went into pre-op.

The needle localization procedure that I dreaded was first, and while it hurt a bit, it wasn't nearly as bad as I'd thought. I had some Ativan in me to calm me down, and I listened to the relaxation tape throughout. Both helped. And now I know why you have to be awake for this procedure: it involves standing up at a mammogram machine, and while your breast is compressed in the device, the doctor threads two thin wires through it to localize the califications for surgical removal. You then leave with the wires sticking out of your chest. Good times.

I then went back to my room where I watched tv and took a nap before the lumpectomy and lymph dissection. I barely remember going into that procedure, because I (thankfully) received anethesia for this part of it. The next thing knew it was about 6pm and my parents joined me in the recovery room. Dr. Specht was her usual upbeat self, indicating everything went according to plan and that she was really pleased with the outcome.

We got home to my parents' house at about 8pm last night (I slept the whole way) and after a quick bite I went to bed.

Easy PeasyAnd I feel well today!

A bit grossed out by the drain in my side that removes fluid from the surgical site, but I'm getting used to it. I'll spare you the real-world picture and share this image instead: the egg-shaped plastic piece hangs from a thin tube that is attached to the incision. It fills with fluid throught the day, and I (and by "I" - I mean "my mom") have to empty it out morning and night. When the fluid output is <30cc (usually after a week) the drain can be removed.

It will also take about a week to get the pathology report back on my tumor.

But for now I just relax and heal (and wait for my hair to start growing again!), until I go back in to meet with my oncologist on July 9th and find out my radiation schedule.

Thank you, again, for all the kind words, care packages, well wishes, wish bracelet and prayers...they really worked!