Friday, October 21, 2011

I Am Living Strong.

When my oncologist, Dr. Isadore Tepler, told me that my Oncotype test indicated that I scored a 21, my heart sunk. If I had scored an 18, the Jewish number standing for life, and only 3 points away from my score, I would have been able to avoid the recommendation for chemotherapy. However, as it stood, the 21 was far enough over the line, and into the “Maybe Chemo Will Help” category, plus given my age, health and cancer, that he said that if it were his own wife, he’d suggest chemotherapy. The good news was that the Taxotere-Cytoxen combination meant very few side effects. In fact, there was only one guaranteed side effect: Absolute hair loss. Complete baldness.

I’d be a hairless, 2-legged, tail-less cat.

As if this stupid cancer weren’t content with taking my breasts, it had to strip me with the last visible sign of femininity I had left – my long, curly ash blonde hair. The irony? My hair hadn’t been in such good health for years. After having highlighted it for some time, I’d decided to let the highlights grow out. Imagine my surprise when simply by going out in the sun, the highlights re-appeared on their own. Sure, there were a few grays up front, nothing that a little hair color couldn’t cover up with ease in my bathroom. But other than that, there weren’t split ends, my hair developed a lovely, natural curl, and I was saving tons of money to boot.

“But I’ve heard there are chemotherapies out there that can spare my hair. Can’t we use those?”

“Sure. There’s one that will give you a 50% chance of keeping your hair.”

“Great. Sign me up.”

“Absolutely. So, instead of 4-5 rounds every 3 weeks for a total of 12 weeks of treatment, we’ll set up twice as frequent, longer rounds for several months.”

“But I can keep my hair?”

“Like I said, you have a 50/50 chance of that. Oh. Did I mention that you’ll be nauseous, in pain, throwing up constantly, and you’ll probably lose your hair anyway?”

“But… “

“Rica, trust me on this. It’s not worth it. And while I’d heard of the statistics, I have only seen a small handful of my patients keep their hair. And the toll on your body of the other option, known as the ‘Red Devil.’ Is brutal. I won’t administer it. You can go to New York City for it, but it’s not the responsible thing to do and I won’t do it. Hair will grow back. Pain won’t be permanent, but you’ll be miserable. Please reconsider.”

I sat, thought about it, and said, “OK, doc, when do we start.”

Maybe it’s because I was able to somehow justify the double mastectomy as merely a severe boob job, or because I was cocky from dodging the radiation bullet, but something about losing my hair meant, to me, that this was really cancer. This was it. The Big “C.” I couldn’t hide behind the swelling from the reconstruction to mask the fact that my breasts were almost cube-like rocks inside of saggy, empty skin balloons. Even looking at the scars, and the dropping skin, I knew that the solution was within a few weeks.

“What about the polar cap? The oncologist at Dana Farber mentioned something about that.”

“You mean that dry ice thing you wear on your head?”
“Yes.”

“It’s medieval. And I’ve never seen it work.”

“Ok. But have you had patients try it? Was there any success?”

“Yes, I’ve had patients try it. And by round three, they all quit and said it was more painful than it was worth. And it didn’t’ always work anyway. Rica, face it. You’re going to lose your hair. But that only means it’s working.”

I tried. I tried to find out a way to avoid looking like a cue ball. To look like I had cancer. To do what I chickened out of years ago at Oberlin when my friend Callan & I decided we’d shave our heads like Sinéad O’Connor. Callan went ahead with it, and she looked lovely. I chickened out and just went with burgundy hair dye instead. I was terrified that I had a bad “bald head.” For me, you have to have a long, swanlike neck, very round head, lovely décolletage and big, bold eyes to be able to carry it off. I, at the moment, had none of those. I was quite sure that the back of my head sloped back terribly, as my hair always flattened out back there. I had a couple of bumps from sebaceous cysts. My neck is thick and stocky, and, with the lack of exercise, my clavicle was filled with fatty tissue. I was no Callan.

I did know one thing – I hated cancer. I hated this cancer for doing this to me. And I was starting to feel terribly helpless. I wanted to do something.

I went home and started Tweeting about it, at a ridiculously early morning hour. My friend, @twowitwowoo is a breast cancer survivor, and she direct messaged me that when she did it, she got people to sponsor her to shave her head.

I immediately hopped onto Facebook. I was desperate to reach the Ride for the Roses fundraising status for the LIVESTRONG Challenge. I was a couple of thousand dollars away. This was perfect.

I created an event, “Donate to Support Rica’s Head Shaving,” scheduled from mid-September through October 16 – the day of the bike ride in Austin. For $18, a swipe of the clippers would be dedicated to the sponsor. For $50, for those who would be present, you’d be able to shear me yourself. My kids created a poster to take with them when they fundraised at Scotts Corner Market that had my picture with the headline, “Our Mommy is Shaving her Head on 10/16… Ask us Why!” They raised a few hundred dollars over a weekend. By the time October 16 came, I’d raised well over $1,300 and we passed the Ride for the Roses White Jersey Incentive Status, which meant we had V.I.P. access to events, ground transportation, reduced travel arrangements, an invitation to an exclusive “Welcome to Texas Dinner.” And the kids would be treated as my guests and enjoy the same amenities.

That left one thing: To shave my head.

As my video blog entry on Day 13 showed, my hair started shedding. Dr. Tepler had told me it wouldn’t happen until between Round 2 & Round 3. My “chemo buddy,” however, told her it would happen on Day 17. On Day 13, as I was videotaping my blog, I ran my fingers through my hair, and clumps, small, came out. This wasn’t just innocent shedding anymore, this was just the beginning.

Soon after I set up that event, the Gannett had reached out to me to write for their Breast Cancer Awareness October Blog, which I happily did. When I explained to Mary, the editor, what I was planning, she reached across her desk and handed me a Norelco clipper set. There were no barriers left.

Friday night, October 14 was the Welcome to Texas Dinner for Ride for the Roses achievers, according to the agenda, at a “secret location.” My kids were convinced it would be at Lance Armstrong’s residence. I laughed at them, assuring them Lance wouldn’t be so foolish as to invite 300 perfect strangers to his home, and that, perhaps, it was at Juan Pelota’s Ranch – a ranch he’d purchased and hosted many public events, like mountain-bike races. We learned, however, that he’d sold the ranch, which encouraged the kids to think it would be in Lance’s backyard.

Inconceivable.

As we boarded the white buses, we were joined by Chris Brewer, Chief Operations Officer, friend of Lance’s, all-around good guy and cancer survivor. My daughter sat next to him in the front, and, as soon as the doors closed, Chris said, “Ok. Y’all want to know the secret location? We’re going to Lance’s house.” Inconceivable! The kids were right!

"Can Lance be my new Daddy?"
Though the clumps of hair falling from my head were growing, I opted out of wearing a wig. I wanted to let my hair have its last hurrah. But as the evening went on in Lance’s yard, I found larger clumps of hair falling into my hands and onto my clothing. As the evening progressed, I must have discreetly dropped at least 4 or 5 sizeable hairballs on the grass or into napkins and into my purse. Later on, we had the chance to meet Lance and speak to him. He remembered meeting me a month earlier at Gracie Mansion where I told him about my chemo treatments. He asked how I was doing with Round 1, and I explained by apologizing for the clumps of hair he may find in his grass the next morning. He smiled, knowingly, took my hand and said, “It’s ok. I understand. It’s all good.” He asked if I was still going to shave my head, as when we met at Gracie Mansion, I’d told him about the shaving, and he remarked that he’d heard about it. I nodded, and he said, “More power to you.”

During the next day’s 5k run, the back of my neck itched, as the gentle brush of the t-shirt’s collar was enough to rub the hairs out of the back of my head and onto my nape. Taking my backpack on and off drew more follicle casualties. That night was the Fundraising Awards Dinner, and, after I got dressed and passed a mirror in the lobby (I’d opted out of “styling” or washing my hair, as I was afraid I wouldn’t have any hair left for the night), I noticed a bald patch forming along the part of my hair. I dodged into the gift shop and bought a hairband to try and Trumpify the patch by arranging and securing some comb overs. I prayed that the headband itself wouldn’t cause more damage.

At the dinner, the Team RadioShack riders that were there for the weekend were dining a couple of tables away. My son, Zachary, endeared himself to champions Chris Horner, Levi Leipheimer (both bald) and Ben King. At the end of the evening, he went to Chris Horner and asked if he’d be willing to come between 7 and 7:30 to the start point, where our team, Team CCC, would be starting with Team RadioShack and Lance, and help shave my head. Chris looked at me, and Zach explained why we were shaving my head. He looked at me with sympathy, and I responded, “Actually, Chris, it’s because I’m such a huge fan, I decided to get your haircut.” We hugged, he said he’d try to make it, but couldn’t make any promises, but that he was there in spirit.

The next morning, I prepared the Norelco Shaver as a matador does his swords, dagger and cape. I ceremoniously unplugged the Norelco, laid out all the parts onto a towel, and packed it away. I looked in the mirror and tied my hair back into a pony tail. I didn’t care, at this point, if any hairs loosened. They were tied tightly in the ponytail – they weren’t going anywhere. I packed a LIVESTRONG bandana in my backpack to keep my head covered under my helmet to protect the newly exposed skin from rubbing and sunburn. We got kitted up and headed to the busses taking us to Dripping Springs. En route, a couple of people, and the kids, asked me if I was ready, etc, and I told them I was. I was sure that I was going to burst into uncontrollable tears as I had during the video blog from Day 13. But it had to be done. Just as we went on the bus, I could feel that eerie sense of the “chills” creeping across my head, which was a predictor of the next set of hairs to loosen. It was like the burps of gas in the Fire Swap in “The Princess Bride” preceding the bursts of fire from the ground.

We arrived, and we rushed to the Ride for the Roses V.I.P. tent to get our bikes, grab some food, and zip over to the Start/Finish line. My friend, Laurens, fellow breast cancer and bald survivor, was there and helped us carry our stuff to the Start/Finish line. My dear friend, and fellow LIVESTRONG Leader, who’d been my cyber-teddy bear throughout the ordeal was there, and he followed us to the Start/Finish point. Chris Brewer was there prepping to ride, and we invited him to join us. He bowed out, and advised me that he wasn’t sure it was a good idea and not to cause a scene. I promised that I wouldn’t, that I’d do it discreetly, but that Doug Ulman, the CEO, was aware of it, and even said, if he was early enough, he’d join us. Chris watched from afar, as a couple of Team CCC friends came around with Erik and the kids, and we took out the clippers. Liz Kreutz, the sports photographer responsible for some of the most recognizable portraits of Lance, and the sole photographer of the book “Comeback 2.0” asked if she could document the process. I was flattered, and said, “Of course!”

With that, I reached into my bag and got the clippers. Erik, being the tallest present, held the pony tail, and the buzz of the clippers began. Before I knew it, as I was nervously cracking jokes, I felt the clipper guards running along the back of my neck. It seemed like nothing was happening, as no weight was lifting, and that the hair felt like it was getting tangled, not cut. I asked if everything was ok, and Erik assured me it was coming along. A blonde woman approached with a video camera and microphone and asked what was going on. I explained to her what was happening, and she asked if she could interview me. As the clippers buzzed, I got miked, and she asked her questions. I noticed a videographer was also videotaping the experience, in addition to the lady in the crowd manning my camera. (Sadly, she neglected to record the first half.)

More friends came by and helped. As I started to feel the breeze against the back of my neck as I’d never experienced before, the kids asked if they could have a turn. I kneeled down so that my daughter and son could take a whack at their old lady. They enjoyed themselves way too much. What I didn’t realize was, as I bent down, Erik was still holding my ponytail, which essentially just lifted off my scalp with ne’er a tug. If there was any doubt that the end was near, that sealed the deal. The kids and Erik continued to shave me down as closely to the skin as possible so I didn’t look like a Guernsey cow, with dark, stubbly and white, bare skin patches. It was time for our team photo, so I grabbed the ponytail, shoved it into my Ziploc baggy and handed it to Laurens, who kindly checked our bags. Chris Horner wheeled up to me and said, “I’m so sorry I missed it – we were tied up over there!” and gave me a big, warm hug. I smiled, told him, “No worries,” and took our places. We took our photos, and mounted up.

Not a tear was shed.




Or watch a local news report... http://austin.ynn.com/content/280949/livestrong-challenge-continues-with-bike-ride-through-hill-country

(You can also see us start the ride at the head of the pack on the left-hand side in this news clip: http://www.kvue.com/news/Lance-Armstrong-is-celebrating-15-years-of-being-cancer-free-131960548.html)

From LIVESTRONG's Twitter Account - http://yfrog.com/h79xdcyjAs LIVESTRONG Tweeted later, “This is #LSCAustin” - LIVESTRONG Challenge Austin - and shared a photograph of the event. And it was. Between not wanting to let down Chris Brewer, and the outpouring of support, with the excitement of the ride and being where I was – yards away from Lance, and all these notables, and fellow survivors and fighters, many of which had it much worse than I did, I felt empowered. I felt strong. It was as though I’d just given cancer a swift kick to the “Pelotas" by taking my hair myself, and not letting chemotherapy slowly, and cruelly, strip my head. And my children joined the fight with me – hands-on. It was a strong message to others, and a strong embrace for me.

Game on, Cancer. Game on.

Tuesday, October 18, 2011

Chemo Day 20: Fatigue & Morning of Gilad Shalit's Release

Is it the wrangling of the little uns? Having run in the 5k? The pitiful attempt at riding Sunday? Or the chemo? Who knows, but I am BEAT.

Monday, October 17, 2011

Chemo Day 19: Wrapped up with a pretty bow

Wrapping up the LIVESTRONG Challenge Weekend...

Chemo Day 18: The Shearing & the Challenge

Shave and a hair cut... 2 bits!



YNN's coverage of the head shaving can be watched here:
http://austin.ynn.com/content/top_stories/280949/livestrong-challenge-continues-with-bike-ride-through-hill-country

Bit #2

Sunday, October 16, 2011

Chemo Day 18: Prepping to go ride and go bald

Baldly going where no Rica has gone before...

Saturday, October 15, 2011

LIVESTRONG Challenge Vlogs...

Chemo Day 15: Herding Cats

Chemo Day 16: The Eagle Has Landed

Chemo Day 17 Part 1: Guess Who's Coming to Dinner?

Chemo Day 17 Pt 2: Lance Grass

Wednesday, October 12, 2011

Chemo Day 14: Whistle While I Work

The reality of working while going through chemo. In part, I know how lucky I am. In part, I know how risky job security is.

Tuesday, October 11, 2011

Chemo Day 13: Reality Bites.

I have nothing to say beyond watch until the end.

Monday, October 10, 2011

Chemo Day 12: I don't like Mondays

A visit from Cantor Sally Neff Greenberg, close friend, fellow Oberlin graduate, and avid knitter perks up a particularly difficult Monday. Experiencing first hair loss of treatment, Sally brought the perfect gift. Also, meet Schmooie, the amazing feline breast cancer and quadruple mastectomy surviving kitty.

Friday, October 7, 2011

Chemo Day 9... I think?

Tuesday, October 4, 2011

It’s my story. Not yours. Mine. All mine. & Chemo Day 6

(Reposted from http://breastcancer.lohudblogs.com/2011/10/04/its-my-story-not-yours-mine-all-mine/)

I've always been a very open person. I don't know if it's because I'm a latent exhibitionist, a single child that demands to be the center of attention, or simply because if it's happening, and it's a part of who I am, there's no point in hiding it. That's why I had no qualms working with the Journal News on this project, writing this blog, being open about my cancer diagnosis and journey, etc. Sure, there are things that I won't reveal publicly - ever. I won't admit to my actual jean size. I won't admit to my exact weight. It will be a cold day in hell when I publicly admit to my real age in newsprint. And I'll never reveal my true secret crush from grade school. (Ok. That was hardly a well-kept secret. Anyone who went to Bi-Cultural with me from 3rd grade until graduation knows the answer, including him.)

In today's video blog, I address a strange situation that arose yesterday. Linda Lombroso, the reporter who wrote the story, "Meet Rica Mendes," emailed me to tell me that a person called her, specifically stating that she wouldn't reveal her name, but that I should explain that "the reason I had the double mastectomy was because I was BRCA positive." Linda and I both remarked at how strange this was for a number of reasons.

First, I don't remember making my BRCA status a secret (though, it should be noted, it is, in fact, a very personal, private medical fact that, I'd imagine, most would not share as openly as I have). I honestly couldn't remember at the time if Linda chose to publish that fact in the story. I know we'd discussed it in the interviews and subsequent conversations. Secondly, how did this person know about my BRCA status? And the fact that my genetic test results was a factor in my surgical choice? Lastly, given the fact that there are only a few ways as to how this person could have known this information - by either being a personal friend or contact, by having followed my story/personal blog for sometime, etc - why would this person feel the need to go to the reporter who wrote the article instead of just dropping a line to me personally and pointing out that perhaps that wasn't clear? Why hide behind the anonymity of a nameless phone call to a third party asking that I state, for the record, that's why I had my double mastectomy?

Now, before anonymous gets defensive, please don't take this as an attack. First off, you're still anonymous - I have no idea who you are (though curiosity is killing this cat, and I've been running my Facebook friends, Twitter followers and blog readers through my head since the email trying to figure out who you are, control freak that I am). Secondly, I'm going to use this as part of a bigger point, so bear with me.

This raises a few issues, within the scope of dealing with cancer and beyond.

I have a lot of gay friends. My cousin is an openly gay activist. I went to Oberlin College. I don't say this to make myself seem cool. I say this because I've witnessed, or been a part of, the coming out process for many, many people over the years. From people who came out at birth to those who eeked out of the closet, and those whom I suspect are still in denial of their own identity after all these years, it's a difficult process to go through, with a tremendous amount of consideration taken, etc. It's not done on a whim. I've likened going public with cancer with coming out of the closet. (I don't mean to belittle coming out, but that I have a new understanding of the kind of debate one has with oneself about how to reveal what, when, etc.)

If there is one thing that I've learned from my brave gay friends about revealing something private publicly, it's that you let the person do it at their own pace. Even if you know the absolute truth, straight from the horse's mouth, you do not put it out there for them, or go to a third party requesting/demanding that the individual reveal more than they already have. There are several reasons for this.
  1. Sexuality, and medical status, are, by law, considered private information. There is no obligation to share this information. Therefore, if the individual chooses to share it, it's a big deal, and not something that you're entitled to know unless they choose to share it with you.
  2. You may very likely scare that person back "into the closet." If this person has chosen this time to go public with something that they aren't obliged to share, let them do it at their own pace. You don't know the reasons why they are choosing the method or timing with which they are employing.
  3. You betray their trust. Even if it was part of a semi-public conversation, it's not your information to share. It's theirs. And if you choose to be the authority on them, and take something that they chose to share with you and pass it onto someone else, they will not be able to trust you.
  4. In a longer-term project, like this one, you don't know if there is a bigger communication plan.
  5. It's simply not polite.
One of the issues that LIVESTRONG works very hard to explore is the notion that a cancer diagnosis creates a stigma. In different cultures and parts of the world, you may as well have leprosy. In the film screening I recently attending for "Delivering Hope," a man in Africa explained that being diagnosed with cancer in his village was worse than being diagnosed with AIDS. It was seen as fatal and causing you to be treated as being an untouchable. While, I, personally, do not see this experience as being brave, for others, I know that it is a huge step to go public with their cancer diagnosis. My "chemo buddy" will not be named, for example, only mentioned in passing, because, for her, it's not for public consumption. I don't judge her for that decision, I won't push her to be as public as I am, and I'll never tell her what to do with the information she's chosen to share with me, because, for her, this isn't up for public scrutiny. This is a private matter. When, and if, she's ready to talk more openly about it, I will support her. And if she never does, I'll support her, too.

As it happens, there are a number of reasons why my BRCA status wasn't revealed. First, well, you'll have to ask Linda as to why she didn't include it in the initial story. My only assumption is because she knew I'd be addressing it at some point. Second, it was because this blog, this project, is not to commemorate Rica Awareness Month. It's meant to be an exploration for Breast Cancer Awareness Month. As much as I love the spotlight, even I know this isn't the Rica Horse & Pony Show. I know that my story is just that - my story. It's just one breast cancer fighter's story. It just happens it's the story of a woman who is willing to expose pretty much everything about that journey. But there are other more relevant tales to tell right now that I wanted to focus my posts on, for the moment. I didn't want the first batch of blogs to be all about me. (Well, ok, the only child in me would love nothing else, but the responsible adult knew that the editors that invited me to participate in this would likely frown upon that.)

So, not to worry - I'll tell my story. If you're really antsy and can't wait, you're invited, as always, to read up on my personal blog, which I've been keeping this whole time, at ricalivestrong.blogspot.com. If you want a preview on the BRCA status situation, read the original blog post where I discuss the genetic factors that played a part in my decision, "Welcome to Our Ool," that I'll be using later this month for the specifics.

But, as I've stated in so many of my posts already, my cancer journey, my treatment choices, my surgeries, my doctors and providers are just that - mine. While I may share tips, offer practical advice, share resources, suggest people and organizations to speak to, I will never state that my, personal choices are universal, the be all end all for everyone with breast cancer, etc. Our cancer diagnosis is like our fingerprints - while we all share the basics, they are still incredibly unique to every one of us, and every single one must be considered individually. Even when the test scores and results are identical, the path towards survivorship that we all choose cannot be empirically defined. What I find is "right" for me is just that - right for me. It may not be right for you. And that's ok. Consider this blog post as my universal disclaimer, if that makes you feel better. This breast cancer story is strictly my own. The views and opinions expressed on this web site are soley those of the original authors and other contributors. Thou shalt not assert any other breast cancer stories before me. No animals were harmed in the making of this film.

I don't want to be the Breast Cancer Poster Child for the Hudson Valley. I just want to be Rica's Breast Cancer Journey Poster Child. Again, maybe it's the diva in me, but I don't want my story to be your story. It's my own.

You have to find your own story in your own breast cancer experience.

Monday, October 3, 2011

The difficulty with being told you're an "inspiration" or "so strong..."

Chemo Day 5

I know I'm a LIVESTRONG Leader, and that implies that I have found some strength in things. That I'm in a position to lead that is more unique than others.

Yes, I've always loved leading things, helping to run events and programs, I'll say it, being in the spotlight. But I'm most comfortable being in that position when I feel like I've earned it. Or that I deserve it. Do I love being in the spotlight because of a great performance? You bet. Do I like being acknowledged as a leader when I have achieved something great? Absolutely.

But here's the thing. I'm hardly an inspiration. I'm a stubborn control freak who is either too hard-headed or stupid to accept the fact that cancer can have some control over me. Is it divine strength or sheer blondeness that I "conquer" through this stuff?

And I'm fallible. I'm so fallible. I have a terrible temper. I can shriek and curse like a truck driver when pushed too far. I say things to my kids that I regret after the blood has cooled and I realize how terrible they were. I can be a tyrannical, screaming banshee in my house. Who knows what terrible things the neighbors think happen in my home? In fact, the poor things witnessed one of my rants as I reamed out a service-provider who was pretending that there wasn't work that had yet to be done and was trying to squirm out of acknowledging the fact he was paid to do things. And that was after a hissy fit because I didn't want anyone in my house.

I spend more hours than I'd like to admit crying, being bratty, and being mopey. I can kvetch, bitch and moan like nobody's business. It's practically an art form. When it comes to certain topics, I am most unforgiving and nasty (just ask my ex-husband and other former friends).

Yes, I say things aloud that, I think, a lot of people feel or wish or need to hear. But that's because I have no filter. That's not because I'm special. It's because I observe things and say them like they are. Yeah, I have a knack for being quippy and putting things in a funny way.

If being just like anyone else, but just more extroverted and willing to blurt things out that would make others shudder inspires you, so be it.

But understand it's not false-modesty when I say, "no, really, I'm not an inspiration, etc," it's genuinely that I just don't see it. I'm glad that things I say and do push others to do good things. I'm happy that LoHud.com has decided that my story, and manner of expression, are helping them spread the word and raise awareness. And, while I would not object to a statue or painting of my likeness (a much thinner version of my likeness that is), don't be offended if I ask or question praise.

I have skeletons in my closet just like everyone else. In fact, I have some pretty gnarly ones. Which is why I don't clean my house.

Sunday, October 2, 2011

Chemo Days 3 & 4...

Chemo Day 3: Same as it ever was

Chemo Day 4: And it was evening...

Chemo Day 4: LIVESTRONG Day