Thursday, March 17, 2016

It Doesn't Get Easier

One of my breast cancer sisters died this morning. Or rather I should probably say that another one of my breast cancer sisters died. It doesn't get easier, thinking about it, or dealing with it. We don't get used to it. Our sisters are dying and it seems that no one is doing anything about it. When you don your pink ribbons in October and you raise funds and walk "for a cure," think about the fact that on average, only 2% of the money donated to most breast cancer charities is used for research. However, on the day you did your walk, 112 people died from metastatic breast cancer. That's about 41,000 every year. And that number hasn't changed in a while.

Rachell died this morning.

Rachell is the young lady in the bottom left corner of this photo. This photo that asks you to "pink responsibly." Because think about it...the color pink isn't a cure, it's just a color.

This is  Rachell telling her story in her own words. She was positive and funny and sweet and kind. She helped me through some rough times with a kind word or gesture. She was 32. Thirty fucking two! I sound pissed right? Because I am fucking pissed. Rachell was 30 when she was diagnosed with Stage 3 Triple Negative Invasive Lobular Carcinoma. It's a bitch of a diagnosis. It's a particularly nasty subtype of breast cancer. But to be honest, any diagnosis of breast cancer is awful.Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms. Although only 6-10% are diagnosed at Stage 4 (metastatic) from the get-go, 20-30% of people initially diagnosed with early stage disease will develop metastatic breast cancer. Rachell was 32 when her cancer metastasized. She died this morning.

I am mad. Mad because Rachell died. Mad because many of my sisters are living with Stage 4 (metastatic) breast cancer. Mad because I have already lost too many friends to this disease. Mad because I have been told numerous times that I was lucky I got an easy cancer. It wasn't easy for Rachell, was it? Or for Annie? Or Seporah? It wasn't easy for the 112 people who died from MBC today. It's not easy. No cancer is easy. None of them.

All the women in that photo above have breast cancer. We were all diagnosed as young adults, the youngest was 28 at diagnosis and the oldest was 42 at diagnosis. We found our cancers in different ways, via self exam, mammogram, MRI. We were diagnosed in varying stages with various subtypes of breast cancer. It wasn't easy for any of us, especially Rachell.

Next time you wear your pink, please think of Rachell, Annie, Seporah and the 112 people who will die today from metastatic breast cancer. And if anyone ever tells you that breast cancer is an easy cancer, punch them in the fucking throat. 

Till next time...

Please visit these links to learn more about MBC and what you can do to help

Metastatic Breast Cancer Network

Tuesday, August 4, 2015

It's Just Hair...Really

When I was going through chemo, I remember meeting a young lady who was also in treatment. Her hair was a little longer than shoulder length, brown, wavy. It was nice hair. But it was just hair. At the time I had a crew cut with some balding areas and a new hairline, which was farther back than it used to be. I was chatting about the head shaving experience with another bald lady who was wearing a head scarf  and the other young woman said, "I am so glad I didn't lose my hair from my chemo. My husband would kill me if I had to shave my head." Okay, so, while I know (or at least I strongly suspect) her husband would not have literally killed her had she lost her hair from chemo, both of us "baldies" looked at each other incredulously and I said, "Wow, that's pretty harsh. I mean, you have cancer. And it's just hair. It will grow back." And she said, "He just really loves my hair." Lynn (the other "baldie") and I just shrugged and changed the subject to one she could join in, since she was obviously not going anywhere for a little bit. After she left, Lynn and I continued chatting about our hair loss and how we felt about it. Both of us were pretty nonchalant. And she said that while it took her husband a little time to get used to it, he loves her and her bald head. My then-boyfriend told me I looked beautiful, and that I was beautiful. He told me that quite often.

My whole life I have had dark brown curly hair. It's been colored, cut, straightened, bleached, highlighted, lowlighted, and now shaved. It's just hair No matter what I did to it, what torture I put my hair through, it always grew back.

Here's a little walk down Nancy's hair memory lane:

Junior High, with David Collins (we're still friends, yay!). I might be rockin' some semblance of a mullet here. 

High School, with my mom... it's big and curly and "secured" with one of those hair clips that looks like the one you use to close the bag of chips. Not one of my finer hair moments. Although probably not as bad as when I went all Flock of Seagulls on my head. ex sister in law's bridal shower, so it was my junior year, 1992. That's one of my besties, Felice, and a LOT of hair!

Florida Atlantic University graduation with my parents, 1993. Long and wavy.

New Year's Eve 2000 with Kayla, the daughter of another bestie. My hair is long and straight. Not a good look for me.

Most of my adult life, my hair has been something like this....a little longer, a little shorter, a little darker, a little lighter, but usually medium to longish and curly and some shade of brown.

Me and my good friend Andrea, tailgating in 2011. 

You get the idea. I think this is 2011 also.

Got this cut before chemo, less to fall out if I started losing my hair.

The day I shaved my head for the first time. Clippers #3, not totally bald. After this, it thinned out a lot more and I got more of an eight head instead of a forehead :-)


After chemo, trying different colors and styles but keeping it short. I discovered that I really love short hair.

I even shaved it again to raise money for childhood cancer research.
Because I promised my friend Lola. Love Like Lola

And this is the current hair look.

So, now that we've taken that short trip down hair memory lane, you can see that it is, just hair. My hair has changed length, style, color, etc, many many times. And nothing terrible happened. And it grew back. Just like I knew it would.

I often get complimented on my hair, which I love! Like any lady, I enjoy a compliment. Women often say things like "I love your hair, I wish I could wear mine like that." And then I respond, "You can. Just go get it cut and bleach it out. Easy peasy." And inevitably the next statement is something along the lines of, "Oh I could never. My husband (or boyfriend, girlfriend, significant other) won't let me." What the actual, everloving fuck do you mean, " 'your whoever the fuck you're in a relationship with' " WON'T LET YOU?!?!?! I may be delusional, but it's your hair. Attached to your head. And if your person loves you, why wouldn't your person want you to be happy? And if trying a short haircut would make you happy, why can't you do it? Oh wait. You can. You just don't want to. Because if you really wanted to, you would. And if you do really really want to and the thought that your person would be angry, or hate you, or divorce you is what's stopping you, then you may want to rethink your relationship.

Since being in the cancer world, I have run into a few more patients and survivors who did not lose their hair, and were relieved because their significant other would be so mad if she/he had to shave their head. I don't get it. There's so many other unwanted  accoutrements that go along with having cancer, worrying that your significant other will be mad at you if you lose your hair should be the least of your concerns.

And if you don't have cancer and you want short, purple spikes on your head, go for it. And if you hate it, change the color, grow it out, and enjoy the next style, or the next.

Because it's just hair. Get the fuck over it and do what the fuck you want with it. 

Really. It's just hair. 

Till next time...

Thursday, July 23, 2015

Don't Tell Me Not To Worry

And also, please don't tell me it will be fine. Don't tell me everything will be okay. Basically don't try to placate me. When I go for a scan, blood work, MRI, etc, please don't tell me not to worry, because it's not helping. I have breast cancer. I don't usually say that I had breast cancer, because even though my status is NED (No Evidence of Disease) right now, I am still under the care of an oncologist, who I see every three months. I have some nodules on my lungs, which are too small to see with a PET scan but that doesn't necessarily mean they're not cancer cells. We've been watching those nodules for a little while and so far they're not doing anything interesting which is good.

Breast Cancer is a bitch. A real bitch. It is estimated that 20-30% of all breast cancer cases will become metastatic. [O'Shaughnessy, J. "Extending Survival with Chemotherapy in MBC" The Oncologist 2005:10]Median survival after a metastatic breast cancer diagnosis is three years. Despite the decrease in cancer mortality rates since 1990, the actual number of Americans who die from this disease has hovered around 40,000 each year since at least the year 2000. 
(American Cancer Society statistics 2000 - 2011) Breast cancer is the most common cancer in women worldwide. It is also the principal cause of death from cancer among women globally. [World Health Organization]

So, although I am currently still dancing with NED, please understand that may not always be the case. When I don't have any scans or other tests scheduled, I rarely worry about the future of my disease. I don't spend too many hours stressing over a recurrence or a distant metastasis. But when someone (my pcp, my massage therapist, myself) finds something "not right" anywhere on my body, and my oncologist orders a scan, I worry. It's a worry that we in the cancer world call "scanxiety." I have a good reason to be concerned any time I lay down in the CT machine, and while I am waiting for my results. And when you tell me not to worry, it doesn't help. 

So, please don't tell me not to worry. Don't tell me it will be fine. Because this time, it just might not be. And when I say I am worried, it's because I know what my life will entail if the scan shows a new tumor. Don't tell me not to be so negative. It's a coping mechanism. If I am prepared for the worst, and I hear good news, then it's a big sigh of relief and I go back to regular life. But if that day just happens to be the day I hear the bad news, I am prepared. Ready? No, no one is ever ready to hear "you have cancer," or "your cancer is back." But at least I am prepared to hear it.

Instead of placating me with empty promises of good results, just wish me luck and tell me you're thinking about me. Tell me that you care and you're hoping for the best. But let me be prepared for the worst.
Till next time...

Monday, July 13, 2015

15 Random Things You May Not Know About Me

Nancy (yep another Nancy, I wonder if she finally found her can of Coke) over at Nancy's Point posted a challenge on her blog to post 15 random things about us. A bunch of my fellow bloggers have done it, and it was fun learning new stuff about them. Now it's my turn. Some of these things you may already know. In no particular order, because it's random, here goes.

1. I am terrified of clowns, those creepy motherfuckers.

2. I have lived on the Space Coast for over ten years, but watching launches never gets old. While I am not so much a space/astronaut/rocket science nerd I love NASA and the Kennedy Space Center and finally got an annual pass last summer.

3. I have wanted my own swimming pool for as long as I can remember and I finally had one built last summer. It's one of the best purchases I ever made.

4. I can't sleep if the closet door in my room is open.

5. I "feel" my mom's presence in her house, and I think her spirit still lives there. Or at least, visits pretty often. I get comfort from it.

6. I have been engaged three times, but never married.

7. Although most people think I am super outgoing and an extrovert, I am much more comfortable alone, and can easily go days without seeing another human.

8. Daisy is my first dog.

9. I am deathly allergic to bees and carry an Epi Pen with me always.

10. I have been getting tattooed since I was 19, which was 26 years ago.

11. My mom died in October 2010. Before she died, she told me to sell my car and her car and buy myself a brand new car, since I had been driving an old car and then my brother's car, which was really creeping me out. I haven't sold her convertible Mustang yet. I can't. Every time I see it outside my house, I smile and think of her driving with the top down, singing loudly, and poorly. We have so many memories in that car, but I still feel a tiny bit guilty for not selling it like she wanted me to.

12. I love cereal. Like, I could pretty much eat it every day and be happy.

13. I loathe running. If someone was chasing me, I wouldn't run. I would just turn around and punch them in the face and hope for the best.

14. I received an almost perfect score on the verbal entrance exam at University of Alabama but failed the math part so horribly they thought two different people took the exam. I had to take it over, in the dean's office.

15. I don't take baths. The thought of sitting in a tepid pool of my own filth skeeves me out so bad.

Hopefully some of my fellow bloggers with complete the challenge as well, It was fun and a nice change from writing about cancer and my life with cancer. If you don't have a blog, but want to join in, you can always leave a comment with 15 random facts about yourself :-)

Til next time...

Wednesday, June 17, 2015

Cancer Made Me Fat

Cancer made me fat. Or maybe I should say, "cancer made me fatter." To be honest, I hadn't been thin since junior high school, but I was always in pretty good shape. After my brother's suicide and my mom's death from cancer six months later, I let myself go a little bit. I was grieving and wasn't paying too much attention to my health. Until I was. And I lost a lot of weight, close to 50 pounds in about a year. When I was diagnosed with breast cancer, I was as healthy as I had been in a while. I was a little chunky, but I was healthy and I wasn't buying clothes in the plus size section.

Then I got a life changing diagnosis. And change my life it did! While dealing with the things associated with cancer like surgery, chemotherapy, more surgery, anxiety, exhaustion, and physical pain, I stopped working out, and I started sleeping a lot more. My body needed the rest, but the inactivity was no match for my insatiable appetite for tacos and cupcakes. The steroids I was given to counteract the possible allergic reaction to the chemo had given me a ravenous hunger. The chemo made everything taste weird so all I wanted was tacos and cupcakes. The extreme fatigue made any physical activity more extreme than walking to and from my car difficult. You do the math...tacos+cupcakes+sleep = weight gain. Oh, and the medical menopause didn't exactly make the situation any better.  I gained almost 40 pounds during my cancer treatment. I can't even count the number of people who said, "aren't you supposed to lose weight on chemo?" Ummm, seriously???? That's not helping. I was able to lose about 15 pounds as soon as I stopped the steroids, and have lost some more since then. But I was still the heaviest I had been in a while. And coupled with the scars, lack of nipples, and generalized anxiety, I had some major body image issues. I remember crying daily every time I looked in the mirror. On the one hand, I was so happy to be alive and able to work and play, but on the other hand, I was mourning the loss of my breasts and my old confident self who could easily make it through an hour long spin class followed by an hour of weight lifting.

Fast forward to 2 years later and although I am not where I want to be emotionally (or physically), I am able to look in the mirror and see a happy, relatively healthy woman, who has been through hell and survived. My scars don't make me cry anymore, and while they don't make me happy, they do make me proud. Proud of the woman I have become. I traveled a rough road to get to this point but I am finally here.

Body image is such a big part of a cancer diagnosis, but it often gets overlooked. No one really discussed with me how much things would change. And of course because I am believed to be the tough strong woman who handles her shit, I grieved for my old self mostly in private. I never asked for help, but I am fortunate to have supportive friends who think I am beautiful no matter what, and who know when I need to actually hear it said out loud. And friends who love me when I ugly cry, even when they can't understand why. Be careful with your words because words hurt, sometimes more than you know. Cancer may have made me fat, but it also made  tougher and stronger  than I ever thought I could be.

Til next time...

Tuesday, May 26, 2015

CancerCon (f.k.a. OMG) 2015

OMG has morphed into a bigger, better Stupid Cancer conference, now known as CancerCon. Also known (to me anyway), as Nancy's Family Reunion. Every OMG/CancerCon experience has been totally different for me, but there has been one constant, the feeling of being with family. In 2013, I felt like I met my long lost relatives for the first time. The following year, I felt like I was attending a family reunion, or like we Jews do, attending my third cousin's bar mitzvah. This year, I was so psyched to see my family, the sisters and brothers I hadn't seen since the last summit, but I was also excited because I knew I would meet some more of those long lost relatives, and I did. I met my brothers, Scott, Jay, and Bryan, and some more sisters, Holly, Madeline and Hallie just to name a few. It's still strange to me when people run up to me like we've known each other our whole lives, because they follow my blog, or know me from Instagram or Twitter. When we finally meet in person, we feel like we already know each other because we share so much of our experiences on social media. Someone once called me a Cancerlebrity which I found rather amusing.

In 2013, when I attended OMG for the first time, I had a few expectations:

1) to make some new friends
2) to learn about the after effects of cancer and how to deal with them
3) to have fun
D) to see the Hoover Dam

I did all that and more. (OMG 2013)
In 2014, I had the following expectations:
1) reconnect with friends I made during OMG2013 and OMG2013 East

2) make some new friends
3) help some newbies (and anyone else I can)
4) have fun (hopefully be involved in some shenanigans)
5) to learn, not just about late effects from cancer, but how to advocate for myself and other young adults with cancer, how to meditate and be mindful, how to clean (my house and myself) with safer and less toxic products, and much more.

Once again, my expectations were met, and then some! (OMG 2014)

This year, my expectations were:

1) reconnect with my brothers and sisters from past summits and Stupid Cancer meetups
2) make some new friends
3) help some newbies (and anyone else I can)
4) learn some new stuff
5) have fun 
The first 5 are pretty much the same as last year. Kind of a cop-out, I know...but it's all true! However, this year, the next one was really super duper important to me...
6) as part of the Inaugural CancerCon Steering Committee, I wanted to make sure CancerCon was a huge success. 
7) make an impact in the young adult cancer community

I definitely reconnected with my family, it was truly like Nancy's Family Reunion. I have no immediate family and a very small extended family, so my friends are my family...framily if you will. And my Stupid Cancer family are the crazy relatives at the reunion, off to the side, having the best time. Which brings me to: have fun!

I can pretty much have fun by myself in a paper bag, so this one is usually the easiest for me, and this year was no exception. I started off by flying from practically below sea level to the mile high city of Denver and promptly hiking with Shananigens through the snow about a mile uphill to St Mary's Glacier, then sledding back down. From there, it was food, drink, baseball, karaoke, more food, more drinks, a scavenger hunt, and a field trip, with a young adult cancer conference thrown into the mix.

I definitely learned a lot about cancer and living with the effects, but that's also pretty much a given at the Stupid Cancer summit.  This year, I also learned a lot about myself. I learned that just by being me, by being open and honest about my experience, I can make a huge difference in the young adult cancer community, which was expectation #7. When Bryan told me that I was the first person he met and I immediately made him feel comfortable and welcome, I was so touched. Because I was just being me...I overheard a comment (I am sure I was probably eavesdropping but that's just semantics), and made a sarcastic but obviously witty comment back and the next thing you know, Bryan and I are hanging out at a Rockies game together, where of course I introduce him to like 50 of my closest Stupid Cancer friends.

Another young lady told me that she sometimes feels like she just can't be strong for everyone all the time and it makes her feel guilty for wanting, needing, to fall apart. Then she remembers a post I made of some of my mom's words of wisdom. When she knew she was going to die of lung cancer, my mom said, "People are going to tell you that you have to be strong. But I am telling you that you don't. You can break down. A lot. And you will. Just promise me, you'll always get back up. No matter who long it takes, you'll always get back up." And this young lady has given herself permission to break down, but she always gets back up. 

I guess I do make an impact in the young adult cancer community.  

And I do believe we had a super successful CancerCon 2015 (expectation #6). This was my first time as part of the Steering Committee and it made the conference new and different for me. I had taken ownership of the experience and was able to be an even bigger part of it. I was so inspired by my fellow Steering Committee members and am forever grateful for the experience of being part of the inaugural team. I am humbled by the support they gave to me and the confidence they had in me to plan the first Stupid Cancer scavenger hunt. I had the "behind the scenes" experience and I can't wait to do it all again for 2016.

There is so much to experience at CancerCon; making friends, learning, teaching, networking, having fun. But for me, it always comes back to that sense of belonging. That place where I feel at home, with my framily. Hence, Nancy's Family Reunion. People often ask me when I will stop attending these summits, like if there's some magic age where one would stop. I always say, "I'll keep coming until they make me stop."

Each year, there's a song that epitomizes the summit for me. My first year, it was The Rainbow Connection (read the blog, you'll understand, I promise). Last year, it was Unity by Shinedown. This year, it's I Lived by One Republic.

I Lived

By OneRepublic
Hoping you take that jump

But don't fear the fall

Hope when the water rises

You built a wall

Hoping the crowd screams out

Screaming your name

Hope if everybody runs
You choose to stay
Hope that you fall in love
And it hurts so bad
The only way you can know
Is give it all you have
And I hope that you don't suffer
But take the pain
Hope when the moment comes you say

I, I did it all

I, I did it all

I owned every second

That this world could give

I saw so many places

The things that I did

With every broken bone
I swear I lived

Hope that you spend your days

But they all add up

And when that sun goes down

Hope you raise your cup

I wish that I could witness

All your joy and all your pain

But until my moment comes
I'll say

I, I did it all

I, I did it all

I owned every second

That this world could give

I saw so many places

And things that I did

With every broken bone
I swear I lived

With every broken bone

I swear I lived

With every broken bone

I swear I lived

I, I did it all

I, I did it all

I owned every second

That this world could give

I saw so many places

And things that I did girl

With every broken bone
I swear I lived

Til next time...

Tuesday, March 31, 2015

This One Time....At Cancer Camp

This one time, at cancer camp, I told seventeen strangers that I want to fuck a midget. I mean, it's not really a big secret or anything. I wrote a blog post about it (Does Anyone Know A Midget?) Anyone who knows me even a little bit, at some point, usually finds out about my fascination with little people. However, I had only known these people for about two days when everyone found out. But the thing about cancer camp is...while you may have only physically met your fellow campers, staff, and volunteers a day ago, you feel like you've known them forever. I think it's because of the elephant in the room, the big C, the C word, whatever you want to call it. We all have cancer. Or had cancer. So, there's that. And that, brings us back to the fraternity that none of us anted to join, but here we are. Common ground. Shitty common ground, but common ground nonetheless.

So, back to the story of how I came to be at cancer camp with 9 other campers in varying stages of treatment and survivorship. I had been looking online for adventure retreats for cancer survivors. I found quite a few but most were for young adults up to age 39. At 45, I didn't qualify, even though my mental age is like 12. Hahahaha. Anyway, I found Epic Experience online and after looking around the website, I filled out an application. I met Nancy Ferro and Colin Ferro (the founders of Epic Experience) at the Stupid Cancer OMG Summit in Vegas last year and we talked a little about the organization and the camps. Epic Experience provides adventure camps for adults with cancer. There's no age limit. If you are 90 years old and your doctor says you can go, then you can go! Our particular group had campers from 28-62.  

The Ferros don't tell you much about what you'll be doing at camp, except snowshoeing and cross country skiing, both of which sounded pretty awesome to me. Anything else we did during our 5 days at the 7W Guest Ranch in Colorado would be icing on the adventure cake for me! We got a list of clothing and supplies to bring. We were told what time we needed to arrive at the Denver airport and that's about all we knew. Epic volunteers met us at the airport and informed us we'd need to think of a nickname to use at camp. Awwww, hell no!  It's bad luck to make up your own nickname. Well, no worries...before we even left the airport to head to the ranch, my nickname was given to me by G-Lo and Sharkbait. I would be known at camp as Bleep. Yes, Bleep. Think about it for a second and it should be easy to figure out how I came to be known as Bleep. Now that I think about it, I feel lucky I got to camp with a nickname already or I may have ended up being called Midget Fucker. My fellow campers were Fig, Jersey Girl, Blue Ridge, Moto, Journey, Sprinkles, Gringo, Mickey, and Vagabond. 

I am not going to give away too many details because the element of surprise is one of the parts of camp that we enjoyed the most. In addition, I don't want to spoil it for any of my fellow cancer peeps who may decide to go to an Epic Experience camp. I will say least for the time we spent at the ranch, with each other, and our amazing volunteers (Master Chief, Scrat, Mama Lou, Wingman, Ranger, Hollywood, Twig and Shananigens) our diagnoses didn't define us. We didn't have to avoid talking about cancer, but we didn't have to talk about it either. We all knew we had cancer. There wasn't any of the awkwardness of meeting new friends and wondering when to tell them you have cancer. And our diagnosis didn't dictate what we could or couldn't do. Because we did EVERYTHING!!!!! Snowshoe? Sure! Cross country ski? Absolutely. And this Florida girl didn't fall once! Put 17 people in a raft and use it to sled down the driveway? Fuck yes! 


Aside from planning a truly epic week of adventures, the thing the Ferros do best, is make you feel like you're part of a family. Not only part of the little family that was our camp...Camp Snow Blowers represent!!!!!! But you become part of the larger, Epic family. 

I want to thank my fellow campers, the Ferros, the volunteers and the donors who make these adventures possible for people like me. I plan to go back and volunteer and experience camp from the other side.

Till next time...