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!

13 comments:

Shannon said...

Thanks for this well thought out list. I'm going to use it to put together a few gift baskets to donate to a friend's charity group, Heaps of Hope, in Boston. She'll know just the right women to benefit from your kind sharing of such an important list.

Bridget said...

I've never heard of Heaps of Hope even though I live in Boston. Thanks for sharing Shannon! I look forward to learning more about it and supporting the organization in the future. You rock! Thank you for your work!

Kristian Kauker said...

I was brought to your Blog by Shannon. My mom is a 4-year survivor of Inflammatory Breast Cancer. She is done all of her treatments and she is doing well.
One thing I'd like to share for your list is an MP3 player and small battery operated speakers or small computer speakers. A few days after her diagnosis, my co-workers pitched in and bought her an MP3 player. I filled the player with music she likes (Enya, Charolette Church, etc) and setup small computer speakers on either side of their (mom and dad) bed. They would often fall asleep to it and it brought her great comfort on nights of worry and discomfort. When it came time for treatments, the music once again helped her through long days of chemo. If she was alone in the treatment room, she would put on her headphones and relax. When staying in the hospital after procedures, I placed the player with a small battery operated speaker next to her on the night stand. Each time she woke up, she would be smiling knowing that the music was there. Now after everything is done, she still finds comfort in listening to the player and drifting off to sleep to it.
I hope this may be an idea for the list.

Kristian Kauker
Proud son of a 4-year IBC survivor

Wendy said...

Great list Bridget! I got lots of great stuff too but there were 2 stand outs for me.

I had some really cute simple knit berets (Black and Oatmeal)similar to the one shown in the link but without the ribbon. I actually dressed them up by tying different scarves around them to go with my outfits. Hey, A girl's got to accessorize! http://www.tlcdirect.org/products/sku-7673__dept-28.html. What I liked is that they were warm (I went through Chemo in the winter), the floppyness of the knit beret top had volume like hair, and because they were knit they stayed on really well.

Another miracle product for me after this latest go round with the mastectomy/reconstruction stuff was Nature's Gate Vitamin E Roll On https://www.natures-gate.com/shop/showitem.asp?ProductId=45177438&menuId=155&withLinks=1 which I used on my scars. My doc was amazed how fast they healed. Used it on my nipple area tattoos as well. I was told that skin would be rough for 6 months. It's been about 4 weeks and they are as soft as a baby's butt! I've now switched to just using my day moisturizer (DermaE Organic Expressions Hydrating Day Cream) on them. (OK that's 3 products!)

Wendy said...

Oh, found my actual beret online. It's by Jon Renau....loved it! Comes in many colors.

http://www.internationalwig.com/ProductDetails.asp?ProductCode=JR_KnitBeret

Kristen Sager Cincotta said...

This list that you have set up is amazing! What a wonderful thing for you to do. I am always being asked what types of things people can do for my mom as she goes through treatments. I will definitely be using this list as a guide in the future.

And you're helping to raise money for a charity at the same time? Just straight up amazing.

~ Kristen

Anonymous said...

Hi Bridget!
I got goosebumps reading your post. I work with Navigating Cancer and you really hit home with your reflection of newly diagnosed women. I'm always searching for ways to reach out and embrace them with some sense of support. Your Ultimate Wish List is awesome! I would love to use this on our site. Can you contact me? Thanks! Becky
becky@navigatingcancer.com

Shop Without Money Sisters said...

This is a great list Bridget. I wish I could have found something like this 5 years ago when I was needing it. I, too, remember finding all those "sterile" websites and I just had to fumble through. A great "chemo" gift a friend gave me was a subscription to People. It comes weekly, no heavy reading and I got quite familiar with celebrities. It also has a crossword puzzle in the back of each issue that is all about celebrities and kind of easy vocab so if you've been reading People, it's not too taxing on a chemo brain, but just taxing enough to tucker you out on those anxiety-ridden nights when you can't sleep. I will use your list as a reference for women I know who are newly diagnosed. Thank you.
Heather

Ronni said...

Hey Bridget - Another alternative are shirts with pockets on the inside for post op drains. One of our former grantees http://alittleeasierrecovery.org/jacki-program.htm has a couple. What I like about these is that the sleeves are also velcro for easy access in the hospital. Just a thought....Love, Ronni

Linda Landowski said...

Good lists! I'll have to try the cocoa butter. Another thing helpful is Gas Cards & food cards! 2 years before my diagnosis my Husband lost his Job & our insurance. I was a Stay at home mom/Grandmother. At age:49! So having any cravings, treats, ice cream or decent Water was Hard! Affording our Drives. Impossible. Too far & we couldn't afford the gas! Also cards and Stamps! Its been so hard doing this! Living in unbearable pain and not being able to get needful helping Meds. & Tests! So any local gift cards would be helpful! I can't be the only jobless, hopeless, wife, mother & grandmother Down on our Luck! Hoping for the Cures!

Rocket said...

Do you have any recommendations where I can get cute mastectomy bathing suits? Thanks!

Jenny Cook said...

More than 5 years later and I'm still sharing your wisdom with women going through breast cancer. I'm always grateful to you for writing this and to your wonderful mother for keeping your blog available. Missing you, my sweet friend <3

Lillian Weber said...

Thank you so much for sharing on your list about the underarm heart pillows. I, myself, found the pillow so very helpful after my lumpectomy, and have heard from so many breast cancer survivors with tears in their eyes, how those pillows have helped them. My heart's desire is that every lady and gentleman who faces breast cancer surgery will hear about these wonderful pillows, because they truly do give greater pain relief than drugs.

Thank you also for linking your readers to my website for these pillows. The address of that link has changed as we have updated our website and online store. The address is now just "mastectomydesigns.com" instead of "store.mastectomydesigns.com". Lillian Weber