Wednesday, September 22, 2010

The Ultimate Breast Cancer Survivor's Wish List

Now that life is good, I have decided that it is time to give back!
Tonight I had a thought that just would not stop bothering me all throughout dinner and for hours as I tossed and turned trying to fall asleep. Have you ever thought about the fact that right now, at this very moment, a woman somewhere is going to bed bearing the burden and sorrow of a new cancer diagnosis?

Life is good for me right now, but this thought haunts me. Every day, every minute of every day, in every corner of the globe, someone else is going to be touched. It might be you right now. It might be your mother. It might be your daughter. It might be your wife. It might be your sister. It might be your best friend. Did you know one woman is diagnosed with breast cancer every three minutes?

Well, that thought has been haunting me tonight probably because, for once in my life, my treatment is working. But for some other woman somewhere life is not good. I think I heard someone call this phenomenon "survivor guilt."

I have learned so much about fighting breast cancer over the past five years. I have so many tips and tricks. I have so much knowledge to share. So, I have decided that during this quiet time in my treatment, now that my chemo seems to be working, I am going to take advantage of this opportunity to give back and share my tips.

And so, without further ado, I present to you, my "Ultimate Breast Cancer Survivor Wish List!"

For your shopping pleasure, I have compiled a comprehensive list of all the silly little items that got me through my 5 diagnoses, my 7 surgeries, my 30 rounds of radiation, and my 11 chemo drugs thus far! These items not only got me through, they also kept me fabulous at moments when I could have felt my lowest!

When I was diagnosed, when I was looking at major lifechanging decisions like whether to lose one breast or two, I did what I knew best, I Googled. Sadly, my Google searches turned up really depressing, hospital-like sites. Nothing fun, young, supportive, or helpful really popped up. Everything was very...sterile.

I hope that this post can fill that void. This is my advice from the trenches. All of the items I have added to this Wish List I have done so with care, so please indulge me as I explain the benefits of each. If you have a mother, a sister, a daughter, or a friend currently struggling with this disease, feel free to pass along this wish list for her shopping pleasure.

I know a few of you who follow my posts have already been diagnosed, so if any of you have anything that you think I should add to the "Ultimate Breast Cancer Survivor Wish List" please share these items in the comments section below. I will add items that I feel are fabulous, but remember, this is about feeling fresh, fun, and lady-like at a time when God seems to be testing us! Don't suggest anything sad!

 The Ultimate Breast Cancer Survivor Wish List

First off, I have recommended Fuzzy Socks. No real explanation is required here except to say, you have cancer. You deserve to be comfortable. Embrace it. Use the socks!

Next on the list we have a lovely "Spring Flowers" pattern underarm pillow. When I was diagnosed, I was lucky enough to call a lady named Saralyn my friend. Saralyn sews, and she was kind enough to sew me my very own underarm pillow, or as Saralyn called it, a "heart pillow." For a breast cancer survivor facing a mastectomy or lymph node resection, this pillow is your new best friend! I recommend getting two, one for under each arm. After surgery, your arms are going to get incredibly tired all the time. They feel like giant weights attached to your tender chest. You can't ever get them quite comfortable. The pillows are your saving grace.  No matter how I tried to bend my regular bed pillows, they just weren't cutting it! These underarm pillows are just what the doctor ordered!

Next on the list are two "TopsyTurbans." When I faced my first round of chemo, I bought into the hype and purchased an entire drawer's worth of Hermes scarves. The problem with scarves is, no matter the pretty pattern or expensive silk, when you don't have hair you really run the risk of looking like a pirate. I was never very patient and, even after taking a workshop, I couldn't quite figure out the art of tying a scarf in some cool manner that would actually stay put. Enter the TopsyTurban. These things come in every color and fabric under the rainbow, and there's no super-long, pirate-looking tail hanging down the back of your head.

The second TopsyTurban isn't even a Turban at all; it's really more of a nightcap. In a cozy cotton fabric, it looks more like the kind of hat a brand new infant would wear to leave the hospital. Like that beautiful, bald newborn baby, you too will lose a lot of heat out of your head on chilly fall and winter evenings. Why stick your head under the covers, or wake up with a stuffy nose? Why not look cute at night too! One of my mom's best friends sent me my very own pink nightcap and I have never slept more comfortably. I still have mine and use it on particularly cold Boston winter nights, even though I now have a full head of hair.

Speaking of sleeping soundly, I have included a super attractive sleep mask on the Ultimate List. Why would I include this you might ask? Well, have any of you ever been in the hospital overnight? Let me just tell you, the nurses come in every 15 minutes to check your blood pressure. The janitors like to mop the floor and take out the trash at 3 am, and if you don't have a private room, God help you! I have had multiple hospital stays- one time with a sleep mask and one time without. Let's just say, whether you have breast cancer or whether you are just visiting the hospital for bunyon surgery, no matter the ailment, please come prepared with a sleep mask. And why not make it a fabulous, paisley-print sleep mask? Why would you settle for the typical black sleep mask that you can get at CVS when pretty paisley is available?

Next on our list is a blue stripe, ruffle-front, button-down shirt. When you have a mastectomy or a lumpectomy,  it will be a few weeks before you get your full range of motion back to your arms. The one icky, oversized, boyfriend shirt you have in the back of your closet, that you only wear when painting the house, that shirt will be the only shirt you can put on for weeks because you won't be able to lift your arms over your head. Why not be proactive and get a button down that you can wear with pride? This one is super cute. I love the ruffles. You can wear it with yoga pants around the house, or slip on some jeans or leggings if you decide to be brave and venture to the grocery store for the first time in a month.

Speaking of button front, that style isn't just reserved for shirts. I am a firm believer that you only feel as good as you look! It is important to not just have lounge-worthy clothes when you are facing surgery. You need to be prepared with one pretty, but still comfortable and practical outfit. This Max and Cleo button front dress fits the bill!  My mastectomy fell just three weeks before Christmas, I couldn't raise my arms above my head, but I sure as hell wasn't going to let that keep me from celebrating Christmas with my family and feeling somewhat normal and pretty as I did so. My button front dress kept the whole family happy.

Next on the list is Palmer's Cocoa Butter.  I had been given any number of scar lotions and stretch mark lotions that didn't help one bit after my first surgery five years ago. It wasn't until my third surgery that my surgeon recommended I try cocoa butter. I tried the cocoa butter on my new scar and it practically disappeared. I then used it on two other scars that were two years old at that point and it worked on those old scars too! Give it a try and let me know how it works for you! Just remember, you need to apply every day and you must be patient. I also found it helpful during radiation to keep my skin happy and smooth. Although, if you have a lot of post-radiation burning, I still recommend you chat with your radiation oncologist about prescription strength cremes.

The Clio BeautyTrim is my greatest find. When I had the lymph nodes under my arm removed. No one told me I was going to have a Grand Canyon for an armpit afterward. There is no way I could get in there ever again with a regular razor blade, and bikini season was quickly approaching! I needed help, and the Clio Beautytrim came to the rescue. It's a teeny, tiny, battery operated razor that fits into the deepest crevices. Because its battery operated, I don't have to worry about nicks or cuts that could lead to lymphadema, and, of course, it comes in pretty colors and patterns!

I include a suggestion for a 1 year subscription to Vanity Fair because the magazine selection in hospitals is horrible and because Vanity Fair has everything from current events to Lindsay Lohan.

If Vanity Fair isn't your speed for hospital reading, I recommend you try the book Promise Me. Promise Me is Susan G. Komen for the Cure founder Nancy Brinker's inspirational memoir. Nancy Brinker is a powerhouse. When I was facing a devestating diagnosis, knowing that someone like Nancy was working hard day and night on my behalf, it helped me stay inspired and it helped me sleep at night. As if that's not reason enough, they include my story in one of the mini-chapters about how Komen for the Cure's work is helping survivors today! (shameless self promotion!)

When you go through chemo, your tastebuds change and with that your sense of smell is going to go through the roof. The Big Man can attest.  I can smell Starbucks from three blocks away! I'm a little Bloodhound! The only thing that helped with overpowering smells when I was/am/will always be in chemo was Mrs. Meyer's Scent Diffuser. It wasn't so floral that it made me nauseous. It was just pleasant. It was just what I needed!

Gentle Touch post-mastectomy cami and pajama set. If you remember nothing at all from this entire wish list, just remember this one item. The hospital is going to try to sell you a post-mastectomy camisole. Trust me, I've tried post-mastectomy camisoles at three different hospitals and for four different surgeries. The Gentle Touch is the best! First off, its cotton, not some polyester, rayon blend that gets SO uncomfortable after 48 straight hours in bed. Furthermore, it has a velcro closing front so getting into and out of it is a breeze when you can't lift your arms. As if that wasn't enough, it comes with matching pajama pants,  and it has a pretty ribbon detail down the front so I actually wore it out in public like a tank top underneath cardigans and blazers! If you prefer just to buy the camisole and not the pajama pants, that's certainly fine. You may do so here.

And finally, Moroccan Oil. An odd addition to a breast cancer survival list you would think, but really a life saver. If you can't lift your arms over your head, blow drying your hair is hell. I found Moroccan Oil (thank you, Ellen!!) not only left my hair shiny and smelling good, it cut my blow drying time in half. It was a lifesaver when I was relying on my impatient mother to dry my hair, and it continued to help me as I slowly recovered.

I think that's enough for now, but again, if anyone else has any additions, please share them in the comments. If you decide to buy anything off of the Ultimate Wish List, proceeds from the sale of these items will benefit Thrive Together, a Boston area charity that provides special support and education services for young women under age 50 who are diagnosed.  And finally, I want to reiterate strongly that, this is a wish list I set up for others. I don't need nor do I "wish for" any of these items. Sadly, I've been there, done that, own it all already! Instead, I hope you or someone you love can find some help from this post at a time when help is most needed. It's time I gave back!

Monday, September 13, 2010

Fresh Fall Start

Here in Boston, the weather has gotten suddenly chilly and the days are getting noticeably shorter. For the Big Man, a high school English teacher, summer is officially over. It is a start to a whole new year. In our household, Labor Day weekend seems like a much more noteworthy holiday than even the hoopla of New Year's Eve.

In my metastatic breast cancer world though, I follow a different calendar. I start a new "year" every three months. Believe it or not, my past three month "year" has already come to a close! It's been only four blog posts, one fast summer, and two glorious holiday weekends since my last set of scans. In June, I celebrated my first real out and out victory in my fight against cancer. For years the words "no change" or "stable" were actually good terms. I hadn't realized what limbo I was living. For five long years, the cancer never actually shrunk. It either grew or it stayed the same. The status quo was a victory. I was simply keeping the beast at bay, I had never before sent it running for the hills.

Then my little silver bullet came along. In June, for the first time, with the help of this TDM1-GDC clinical trial I started winning!

But last week, I was facing a new question, a new challenge. If you remember, when I first started the clinical trial I was taking both TDM1 and oral chemo pills called GDC. That combination almost killed me. My platelet count fell to dangerous levels. I was breaking out with "spontaneous bruising", which might sound tame in medical terms, but was in reality the scariest thing I've ever been through. I also couldn't get out of bed because every step, every breath, every movement hurt from the inside out. So I threw in the towel and I was devastated. But when I got the good June scan results, my devastation turned to hope.

Last week, as I went in for scans and results, I was again filled with dread. I faced a new question: without the GDC pills, would the cancer shrink? Would TDM1 alone be enough to keep this cancer running for dear life (I think that phrase takes on a new, opposite meaning in this case, don't you??!)

Well, my friends, the verdict is in:

 I am kicking cancer's ass!

In the past three months, the TDM1 has shrunk the original tumor in my liver visibly. I quote from the Radiology Report:

"There is an ill-defined mass in segment 6 of the liver which is slightly decreased compared to prior examination and measures 1.4 X 1.1 cm. "

But here's the best part...drumroll please....the scan doesn't even mention the second, smaller, newer liver "lesion" that showed up in April and started this whole clinical trial drama!

That vile, nasty, evil thing that sent me to the hospital for a biopsy that hurt like hell, it just disappeared so quickly and so quietly. That liver lesion arrived with so much pain and hoopla, and then it disappeared without even a peep! Take THAT cancer!

The TDM1 is working. I love my little silver bullet.

Me heading off to pre-school,
I guess at that age you didn't need a backpack?
I don't know what I love more,
my pig tales or my blue big girl shorts! 
This September is truly a fresh start for me as well as for my husband. This morning, I drove past an elementary school on my way to Starbucks. I saw and heard dozens of adorable children with shiny new backpacks, new haircuts, vivid white polo shirts, and smiles of pure joy race to visit with classmates.

As I drove past, I felt a kinship with those elementary schoolers, not because I was reliving my own childhood, but more because I share in their joy. This week, every phone conversation I have, every time I see a friend, every morning when I see the Big Man, I am filled with unbridled joy and the excited flip flop in my tummy that comes with new beginnings.

Today is a shiny, new backpack kind of day! Who knows what sort of terrible challenges lie ahead for the rest of this year, but today as I embark on a new chapter, I am fresh, well rested, healthy and new. My liver is shiny and clean and the world is my oyster.

I hope that all of you can take a bit of my energy today and face this new week with some ounce of unbridled joy and optimism. To see that sort of unconditional trust, hope, and love in an adult is an unusual gift. I think if we faced each morning like a child the world would be a better place, and our day to day lives would feel just a little less painful.

I want to say one last final thought about my second liver spot. That evil creature kept my entire family and all of you, my blog friends, awake at night with fear, but we must also remember, it also united us all in prayer and in hope, and, now, our prayers have been answered. That's the beauty of life, the same thing that hurts us more deeply than we can imagine, also opens us up to more joy than could have been enjoyed before. A rollercoaster is only as thrilling as its scariest hills and loops.

Thank you all for helping me and encouraging me along this journey. I cherish all of your comments and support more than you can ever know. I deeply believe I wouldn't have made it to this moment without you.