30 facts in 30 days, Day 5

Since the month is young and many people are asking "then what CAN I do?" I'm sharing a post from the founder of Badass Survivors, Melanie Childers. Short post from me today - please read her words.

Don't buy pink: 5 ways to make a real difference for breast cancer

30 facts in 30 days, Day 4

I'm kinda cheating on today's post, guys - I'm sharing something from Kathi Kolb, aka The Accidental Amazon. I really want to get into the marginalization of folks with mets/Stage IV and the pathetic lack of funding for metastatic breast cancer, but I don't have the energy right now. Ironically, it's because of my own cancer treatment side effects: I'm having a very painful lymphedema flare. So I'm going to give you Kathi's post, and in the days to come I'll talk about mets, and also about lymphedema.

When any of us is first diagnosed with breast cancer, one of our first visceral reactions is fear. And there is a good reason for that. Close to a third of those of us who are diagnosed with invasive breast cancer will develop mets. Even for those of us diagnosed with DCIS, non-invasive breast cancer, up to 10% will develop invasive breast cancer, and that 10% will then be at a 30% risk for developing mets. And yet, a miniscule percentage of research funds goes to finding effective treatment, prevention and cures for metastatic breast cancer.

From Metastatic Breast Cancer by The Accidental Amazon

30 facts in 30 days, Day 3

Melanie Childers of Badass Survivors shared this yesterday on Facebook, and I told her that it would be today's fact.

From We're Aware - Now What? A patient's perspective on the need for research, a Healthline article by Ann Silberman of But Doctor, I hate pink!

The Susan G. Komen Foundation (also known as Komen), by far the largest breast cancer charity, only donates 17 percent of their millions to fund research grants. And MBCN estimates that less than five percent of all charitable money goes towards research for metastases, the only form of breast cancer that kills. The rest of the money is funneled back into awareness and education. Races are sponsored, literature is distributed, breast self-exams are advertised, and of course, mammogram machines for clinics are funded. But little is spent to help save those who are dying in the last stages of the disease.

Most people are unaware of the reality of breast cancer, but even fewer are aware of the reality of stage IV/metastatic breast cancer. It's not an instant death sentence as it once was. Many people - because men get breast cancer too - live for years with stage IV breast cancer, changing treatments each time the current one stops working. Sadly, not only are stage IV patients marginalized by the lack of funding, but also by other patients. It's HARD to talk about, and a lot of early-stage patients, frankly, don't want to be confronted by their worst fears.

I think more on this will be tomorrow's fact. 

30 Facts in 30 Days, Day 2

How about something practical you can do in just a minute?

From Breast Cancer Action: 

More than 20 years after the introduction of the pink ribbon, breast cancer “awareness” has become a multibillion-dollar industry that benefits corporations more than women’s health. This flood of products and the widespread culture of “pink” have hijacked the breast cancer movement.

Join breast cancer activists from across the country and send a letter to corporations that are responsible for some of the most outrageous pink ribbon promotions.

Together we demand that they Stop the Distraction and turn instead toward clear alternatives that can truly make a difference to all women, from all communities who are at risk of and living with breast cancer.

Click the link above and add your name! Then, when you see other offenders, ask to see a manager. Politely ask if they have any idea where the money from the tchotchkes goes, and if they don't, ask for the number to corporate. Please, please, don't direct your righteous anger at them - these types of things come from head offices, not local branches of major companies!

Yesterday I was at Walgreens, and when I was checking out, the screen asked if I wanted to add a donation to Komen for the Cure. Of course the answer is HELL NO, but I gave the clerk a really quick "why Komen sucks" which he had no idea about. (See this 2012 post from Kathi Kolb, aka The Accidental Amazon for more.) I went to the front counter and asked the ladies there - gave them a little bit more information, doing my best not to word-vomit on them, and asked who I could get in touch with. They told me that the best number is the one on my receipt, and that I'd either be able to speak to someone directly, or told where to write. I'm going to make that phone call today, and will edit when I have more information. My plan is to ask if whoever makes these decisions has any idea the controversy surrounding Komen, and whether they would consider switching to a different organization, like Metastatic Breast Cancer Network.

More tomorrow!

"Happy" Pinktober, aka 30 Facts in 30 Days

It's Pinktober! And you know what that means. A plethora of largely-meaningless pink ribbons abounds everywhere you look. As a self-professed research junkie and pink-hater, I've decided to present 30 facts in 30 days to counteract the misleading bounciness of those happy smiling faces that often accompany the ribbons. I'll probably talk about other stuff too (hello, painful lymphedema flare), but in the meantime, here's Day One of Pinktober:

30 facts in 30 days Day 1: "From the beginning, the pink ribbon connoting breast cancer awareness has been embroiled in controversy. Today, some members of the movement wear it proudly, giving thanks for both the symbol and its attendant charity-dollar largesse. Others hate it with a passion. But to much of the media and the world at large, the ribbon is the breast cancer movement. Where did the ribbon come from, where is it going, and what has it meant along the way?"

Think Before You Pink: A History of the Pink Ribbon

Think Before You Pink » History of the Pink Ribbon

The woman was 68-year-old Charlotte Haley, the granddaughter, sister, and mother of women who had battled breast cancer. Her peach-colored loops were handmade in her dining room.

THINKBEFOREYOUPINK.ORG

I encourage you to do your own research, to make sure you understand where your dollars are going before you spend them on pink ribbon-adorned items.

Blogging my way through therapy and back to my life

I started therapy today. The first session was primarily an evaluation, but we did get into a few things, which surprised the therapist as I guess it usually takes longer. But this isn't my first time, so I know how it works for the most part. And I'm motivated to get better and get back to actually living my life, not just sort of existing my way through it.

We discussed my goals, how I've been feeling, why I think I'm in the place I'm in. And I realized that I've been thinking the reason for the current depression and feelings of detachment stemmed from grief - that since 2011 basically piled so much crap on me that I couldn't cope, I had this backlog of grief I needed to work through. But today I realized that's not true. While I miss my grandfather and my stepdad desperately, grief is pretty normal. Everyone dies, and everyone grieves when they lose someone they love.

No, mine is all about cancer. I've given it both too much and not enough credit all at once. I told myself that I'd had "cancer lite" since mine was caught early and I didn't need chemo or radiation, so I hadn't been through as much as my friends who needed either or both, or my friends who've had recurrences and are Stage IV. I compared my experience and dismissed it as "less than" others. By doing so, I couldn't allow myself to grieve, to really deal with it.

At the same time, I've given cancer power over me. It took my breasts, rearranged my body, and now I have lymphedema. My body will never be the same. I've allowed my identity to become wrapped up in these facts - I've withdrawn from friends because they ask what they can do and I don't have any idea how to answer, and because I don't know how to let go and just BE anymore. I put on my ever-present cheerful public face - the face that's so good that only my husband and son can truly see through it - and lie. I lie that I'm okay, I lie about the depression that's eating me up. About the ennui that's my constant companion. It's lying by omission, but when it comes to friends, it counts as lies. The problem is, I don't know how to remove the public face and be honest. I walk out the door and it snaps into place as easily as putting on my glasses.

My therapist held up his pen and asked "If this was a magic wand and I could wave it and you could be whoever you wanted, what would that look like?" I started to cry immediately and said "You can't - it's impossible." He asked if I meant that I'm not willing to work for it, and I said "I can't ever NOT have had cancer. I can't have my breasts back, I can't not have lymphedema, I can't make the pain stop, I can't be who I was before. That's what I want, and it's impossible." And that IS what I want. And this depression, this ennui, is because I have not really, truly, come to terms with the fact that I had cancer, because I believed that it wasn't as "bad" as my friends, that they somehow deserved more than me, because they're going through much worse. And if I never come to terms with having had the disease, I can't come to terms with the treatment, or my life as it is now. I can't learn to accept that this is the new normal, and that I can be happy again.

The therapist gave me some papers and some homework. Some of it seems obvious, almost juvenile in its simplicity, but since all I seem to do is overthink and not allow my emotions to connect anymore, I need it all explained to me in small, simple words. I need someone to hold my hand, someone who's not emotionally invested in me like my husband, son and friends, and tell me I can do this, I can get through this, I can be okay again. Someone to tell me that cancer didn't steal ME away, that I'm still in here rattling around. That I can reconnect with my friends, who I miss so much. And that I deserve all of this.

More as it comes to me - I always forget how hard this journey is, but I'm trying to remember how worthwhile it can be!

Living With Lymphedema

The best way I can think of to talk about my experience with lymphedema is to tell you about my morning.

It's time to shower. Before I can, I pull out my PitPak, which I keep in my right armpit at night to keep the swelling down. Then I take off my Under Armour compression shirt, which I wear to keep mild compression on my chest and torso and reduce the amount of pain I have without compression, so I can sleep. It also helps keep my PitPak in place.

After my shower, I make sure I'm good and dry so my compression garments don't trap any moisture. Then I grit my teeth and put on deodorant (I get electric shocks down my right arm when things rub down my pit like that, though it's better than it used to be and I've learned to apply it with much less pressure). After that I don my Juzo Armsleeve, using "It Stays", a roll-on adhesive, to keep the top from rolling down and needing to be messed with all day. (An aside: I wear a plain beige sleeve. I've been asked why, when I have blue hair and love color, and there are so many really awesome designs available. It's because I don't want to be noticed for my sleeve and have to answer questions about it. The beige one is almost never noticed or commented on, and besides, I'd rather be noticed for my cool hair or my knitwear than my sleeve!) If my hand is swollen, I have a gauntlet that I can wear. I only need it sometimes, thankfully.

Next I put on regular underpants and pull on my custom garments. The closest description I can give is bike shorts and a tank top, but that's not quite right. The shorts have silicone bands on the leg openings to keep them in place, and only come up to about the top of my butt crack (sorry). The top comes down further than the top of the shorts and they Velcro together. In combination, they keep down the swelling in my left lower abdomen - a result of the lymph nodes moved during my reconstruction, as well as the area below the bra line, and my upper chest. Without compression I'm in some degree of near-constant pain, lymphatic fluid builds up, and I swell and am generally miserable.

Here's a pic of them, freshly washed so they are at their tightest (thus providing the best compression):

Note: my "foobs" are not that small - that area is pretty elastic! But since I have lymphedema in my entire chest, the compression has to be pretty specific without causing the "uniboob" look under clothes.

Putting on my garments is a hassle. They are (for hopefully obvious reasons) very tight, so I have to wrestle with them. The Velcro likes to bunch up, and when I put on jeans I have to really fight to keep it lying flat so it doesn't show. Also, the top comes up rather high, so in order to wear v-neck or button-up shirts I have to either wear a shawl (thankfully I'm a knitter and the weather is cooling down, but in the heat of Florida summers, the garments are ENOUGH on their own) or a bandeau top to hide it.

Once I'm dressed, I can pretty much forget about my garments until I have to go to the bathroom. Then I get to wrestle all over again as I position the shorts and top properly and get the Velcro to lie as flat as I can under my clothes. It's a hassle, but I consider it better than the alternative (not wearing them), especially since I can't wear a regular bra anymore - I have a long-line mastectomy bra, but it's not comfortable and doesn't stay put, nor does it provide compression.

Other times I can't forget about my garments include when I shift wrong and the underarm fabric pulls uncomfortably, my sleeve shifts down ("It Stays" has finally eliminated that issue), my hand is swollen and I need the gauntlet, which can restrict some movements, or my clothes don't look right. I realize this may seem trivial, but those of us who've had cancer just want some normalcy, which can be really hard to achieve. The custom shorts don't come up very high, so there is an area of overlap where there's a lot of compression at the top of the shorts, which means that I have a "pooch" just above that where clothes can look odd. I try to find flattering clothing, but since I'm still struggling to accept my body and now the garments I have to wear, that can be really difficult. The garments are thick and add a layer of fabric that is not only warm, but also ungainly.

I'll do another post soon about lymphedema itself, the risks and potential complications. I thought I'd start here - with everyday living.

Keep in mind after reading all this that I have mild lymphedema that's manageable with a combination of MLD (see previous posts) and compression. Not everyone is lucky enough to catch it as early, or to be able to have treatment and get proper garments.