Home of the Fairfield/Westchester County LIVESTRONG Army leader, Rica. What goes on in the life of a LIVESTRONG Leader? Raise funds so Rica and her kids can represent at the Austin, TX Challenge again & bring some friends to kick cancer with us!
Thursday, March 1 was my surgical liberation day. After 15 days of wearing the same surgical vest (ok, I alternated between a couple, but when you wear a garment for 24-48 hours or more in rotation with an identical garment for another 24-48 hours, does it matter?), 2 drains sticking out of both sides, and surgical pads being held in place by sheer will, I'd had it. I was grouchy. I was angry. I was in pain (when I wasn't on pain killers). I felt that the drains owned me, and had a mind of their own. Yes, folks, I'd turned into Dr. Octopus - down to the sad little hair. I was a grimacing mastermind, who desperately wanted to sever my inorganic appendages as much as I was a master to them. But, on Thursday, after some Lidocaine shots, I was rid of these stupid drains. No more tubes sticking out of my sides that I could accidentally yank, no more strange things tugging at my insides, no more draining icky yellow fluid and praying there weren't any surges. The drains were out. And I could bathe again. (My apologies to those poor souls who, knowingly or unknowingly, were subjected to my rather Elizabethan sanitary standards.)
But, that was just the beginning.
Today I met with my oncologist, Dr. Tepler. Sometimes, it's a hard read with him. There are a lot of strange silences, unspoken questions, and a lot of moments where I wonder, "Should I say something? Is he going to say anything? Are we done talking? Did we start?" It was one of those days.
First, I walked into the Hematology & Oncology practice at the Bennett Cancer Center at Stamford Hospital, and was completely confused. The entire reception/office facility was planted firmly right in the waiting area, with their office space blacked out - renovations. But I didn't see the signs about pardoning any one's appearances on my way in. I was running a bit late, but with Dr. Tepler, that should have been fine as I'm usually waiting a good half-hour. But, to my surprise, he was standing by the desk, as though he'd just called my name. With a surgical mask on. I assumed that either he was sick, or he really didn't like the dust and muss of renovation. Turns out, he was sick.
While I was waiting to check in, he grabbed a paper and sat with us patients in the waiting area. I awkwardly sat next to him, unsure whether or not I should say hello or let him read his newspaper in peace - perhaps this was his way of relaxing? We sat, silently, next to each other for a moment, and I asked, "Should we head into your office?" He looked at me and asked if I'd had blood work done yet. I shoot my head and asked, "Am I supposed to?" He said that I am supposed to and that I was supposed to fast. It was news to me. I went to the desk to inquire about it, and Briana said, "Yes, you need to have blood work done." We both looked to Dr. Tepler, who stared back at us. After another awkward lull, I asked if we should wait, and he said to just skip the blood work. Then we did our usual shuffle back to his office - I start out following him, he stops/slows down along the way so I'm in front of him, I feel strange leading him to his office, so I stop and we end up staring at each other for a moment, then he steps forward, I step forward, and eventually, we politely allow one another to lead the other into his office.
I'd go into further detail into our appointment, but, it's patient/doctor privilege and, frankly, it was a lot of short questions and answers, silences, me staring at his computer screen as he clicks buttons and reviews my chart, quietly, and us looking at each other blankly.
You have to understand, as strange as this ritual seems, I appreciate it a great deal. First, it's terribly amusing. Second, I get why Dr. Tepler is so quiet and introverted. The man is a genius. He's that kind of quiet genius that, on some level, I have to wonder if he just forgets about the verbalizing step in the process because his mind is moving so quickly forward.
Anyway, after I felt that I had counted all the pores on what face was exposed beyond the surgical mask, I asked, "So am I in remission? I know I'm not cancer free for 5 years, right?"
He smiled (I could tell - his ears lifted the surgical mask off the bridge of his nose and the corners of his eyes wrinkled), clicked his tongue, and said, "Well, no, Rica, you're not in remission. You're in a much better state."
I looked at him quizzically, waiting for the punchline, forgetting with whom I was speaking, and grunted, "Huh?"
Dr. Tepler said, "Rica, your status is better than remission. You are 'No Evidence of Disease.'"
I asked, stupidly, "Well, I get that that's good, but that's better than remission?"
He smiled again and said, "Yes. It means that not only do all your tests show that you have no more cancer, but that we don't expect any recurrence. You have no evidence of the disease left in your body."
"Really?"
"Yes, really."
"But is that until the next body scans?"
"No."
"Why not?"
"Because does it make any sense for me to scan you, increasing your chance of new cancers, when I can tell you don't have any cancer left in your body?"
"So you can see that in my blood work? I don't have to have annual or quarterly scans?"
I'm going on the record, here, in a plea to all cancer organizations who claim to "service" Westchester County, NY.
THE WORLD DOES NOT REVOLVE AROUND WHITE PLAINS!
There is a large population of people in Northern Westchester that is unable to use public transportation, who are screaming for assistance! Mount Kisco, Lewisboro & Bedford have significant populations, and, unlike the Lower Westchester residents, we are left isolated!
For many of us, our Connecticut neighbors are far closer and accessible by public transportation than White Plains! But, because we are New York residents, we can't use them!
Please set up some satellite offices! And just because we are getting treatment in Connecticut, do not assume that we're "taken care of" or doing so to deny our New York roots!
And to those that provide the services, learn the geography of the county you serve! And I don't just mean looking at a map, I mean take a long look to see what it takes to get to White Plains! If I look at a map, it may look like, going from the border of one Northern Westchester town to yours, it's just a quick jaunt. But actually map out the route and you'll see it can be an ordeal, especially when you're in treatment.
You lose hair. Perhaps you'll just thin a bit, but you'll lose hair. Not only the hair on your head, but everywhere. From head-to-toe, you lose hair. You may not lose ALL of your eyelashes, or arm hair, or eyebrows. Though, it could be considered a pro - you don't have to shave your legs, or your armpits. And, ladies, let's just say that my "Hello Kitty" (as Nene Leakes puts it) has never been hair-free and smoother for this long before. Brazilian Waxes can't hold a candle to chemotherapy in that regard. (Though, I don't recommend holding a candle to anything in that general region... unless you're into that kind of thing.)
Crap will be an understatement when people ask you how you feel. You will be forced to come up with a whole new vocabulary of synonyms for crap, each one getting worse as they go.
If you choose to eat when you feel you can, consuming as many calories as possible for fear that you may not be able to eat when nausea kicks in, and the anti-nausea meds never wear off, you will realize at the end of treatment, that you have gained so much weight that you could give the Stay Puft man a run for his money, and rue every day that you ate because you could.
Chemo brain messes with your mind. As a result, you can not remember the names and faces of all the kind nurses and technicians that take care of you and have to resort to writing notes somewhere (which you'll undoubtedly forget) so you can remember and not look like a moron when you come back in for your next appointment.
Even if you've had 20/20 vision, expect some fuzziness. So, you'd better invest in some anti-aging/anti-wrinkle treatments because the squinting will age your face 30 years by the time you're done with chemo.
You have absolutely no clue, if you've lost all your hair, what color, texture, or condition your hair will grow back in. You could have been a brunette, and, voila! 6 weeks after chemo, you have seedlings of ginger hair growing. You could have had pin-straight hair like Janice in the Muppets, and it will grow back curly like Little Orphan Annie!
No, that ridiculously expensive, fine wine hasn't turned. And, no, that fois gras hasn't spoiled. That gnarly taste in your mouth, as though you've been sucking on rusted bike chains, is a result of chemotherapy. Now isn't the time to go fine dining, folks, unless you've given your taste buds a test run. Money down the toilet.
The Not-So-Obvious
If you are a blonde and bald, you are now capable of getting brainfreeze from the outside in.
When you finally get the clearance to move again, and you're not feeling like a sack of leaden bones, you may find simply walking to and from your mailbox as exhausting as running a marathon (or whatever you might imagine it might be like if you've never run a marathon.)
You stare at the first, single, isolated sprout of "real" hair, vs. the weird chemo peach fuzz that grows in its place like a transparent mold, and ponder if you should pluck it or not.
You fear the impending itchiness as hair grows back. Anywhere and everywhere. I'll leave it at that. You can figure out the rest.
You miss your oncologist and the regularity of the appointments and are not quite sure what this "daily grind" thing is anymore.
When you start to dip your toes back into the "daily grind," you realize it's the wrong roast and are no longer sure you survived in order to get back into it.
You will have to give up your yoga and pajama pants.
You put mascara on, hoping to make your lack of eyelashes not quite apparent. Unfortunately, you only have 3 eyelashes per lid long enough for the mascara to adhere, so you end up looking like Spongebob Squarepants.
You can't touch your toes. You see, apparently, for some of us, our organs react to chemotherapy negatively. (Duh.) They may swell, giving you a lovely bloated feeling that isn't just around for a couple of days a month. If you also put on some weight, you will find you have to get your children to help you take on and off your socks. So, if you're currently healthy and don't have cancer, treat those rugrats well. They may be taking care of you sooner than you thought.
Invest in a hemorrhoid pillow. Not because you'll have hemorrhoids, but because you may find yourself frequently getting intimately close with your toilet seat, so why not make yourself comfortable? And make sure you have some disinfectant wipes nearby just in case you forget which side is up.
Your oncologist is going to put you on a stool softener. Don't think that the minute you finish chemotherapy that you're home free. As you start to venture out of the safety of your home or hospital, make note of where all the bathrooms are wherever you go and just how long it takes to get there.
I'm also seeking volunteers and businesses to sponsor expenses like the insurance, t-shirts, etc! If you're interested, please contact me at rmendes.livestrong@gmail.com.
When I was a really little kid, I wanted to be Spiderman. When I was a little girl, watching Linda Carter week after week, I wanted to be Wonder Woman. And when the movie came out, I wanted to be Supergirl. In high school, when I saw Michelle Pfeiffer don the latex, I wanted to be Catwoman (of course, meeting and selling Eartha Kitt muffins every morning for a summer contributed to that fantasy). In college, I was thrilled to dress my friend Charity, who was playing Princess Ida, like Xena in our production of the "Three Princess Project" And I always tell my kids not to make me angry, as they wouldn't like me if I got angry...
Ok. So I DO own Wonder Woman/Supergirl boots.
I bought them the day I was diagnosed - I was already
channeling my inner super heroine. Glad they followed
in my footsteps.
I never, sadly, developed any superhuman strength, or super powers. I shared nothing in common with any of these heroines. They were unattainable beacons of womanhood. Good examples, of course, but they existed on a plane that was far beyond reach.
Or were they?
A brilliant ad campaign is launching in, of all places, Mozambique, promoting self-breast examinations as a means to increase early detection of breast cancer. Associação da Luta Contra o Câncer in Mozambique is launching the following campaign of super heroines giving themselves breast exams in, what I think is, one of the most eye-catching, powerful campaigns I've seen in a long time.
It doesn't play on fear, shock, sentimentality, or the color pink. It focuses on powerful women. Strength. It humanizes these super heroines that so many of us grew up looking up to, and generation upon generation admire at some point in their lives, and shows us that, despite all the supernatural powers in the world, cancer can touch us all. Despite the cloaks, spandex and genetic mutations, we are all still women.
Today, I feel like Wonder Woman. I may not break out the starry bloomers and tiara, but I realize that I faced a dubious super villain, and I'm beating it down.
Ah, yes, post-surgery/chemo couch potatohood has struck, and my waistline, ability to move, etc, has paid the price. I'm on the verge of becoming one of those people who has to be surgically removed from their sofa as their flesh has interwoven with the upholstery. Help me! Help me!
Recently, Facebook upgraded/downgraded their format (up or down depending on how you feel), and now you have the option of displaying a Timeline. In classic form, events are marked in a running timeline from birth until the present. Facebook has tried to automatically take status updates and photos that were uploaded/posted to the timeline, but of course, there are some photos that may have been from events much earlier in life that need to have their dates updated.
While waiting for some emails from work, I decided to hop onto Facebook and start going through my albums, updating photos with places, dates and defining "life events." In so doing, I ran across photos from the first LIVESTRONG Challenge I participated in - the 2010 Philadelphia LIVESTRONG Bike Ride. Some of those photos were tagged with the name, "Ryan Weiss," my friend whom I was supposed to meet at the Challenge, but he'd just left the hospital and was unable to attend. Sadly, Ryan passed not long after thanks to a tumor that came back with a vengeance. It was the first time that I'd seen Lance in person, it was my first time riding in a peloton of that size, and my first taste of what the LIVESTRONG organization was capable of doing.
As I click through photo after photo in my Facebook album, I'm struck by the final photo, with the caption, "I gots me a secret LIVESTRONG admirer."
As I've blogged about in the past, the yellow roses are handed out to cancer survivors as they cross the finish line. Survivors go through a designated chute so that they can receive this honor and an extra special welcome. In August of 2010, I did not go through the Survivors Only chute, as I was riding in honor of my friend, Ryan Weiss, and I had not had cancer. So I thought.
But, as you can see in the photo above, when I returned to my bike after, what had been a most wet afternoon, someone had very purposefully woven a yellow Survivor rose in my front wheel. And, I highly doubt that they could have gotten my bike mixed up with someone elses. My bike has bright purple tires and brake/shifter cables, deep purple water bottle cages, and "I Ride For" stickers for Ryan and my grandmother up and down the frame.
At the time, if course, I was tickled by the idea that someone wanted to give me a rose. Was it from an admirer? A LIVESTRONG friend who was a Survivor but hadn't had the chance to say goodbye? Someone who thought my bike was cool?
But, now, part of me wonders, "What could this person have known or sensed that I didn't? Do Survivors somehow have a magical 'cancer detector,' and were somehow warning me of what was to come one year later?"
There has been no question that, in many ways, the universe was sending me many messages over the past year, and, looking at this photo, perhaps this was the first visual 'sign' that I was destined to earn a rose.
Without question, I would not have gotten that fateful mammogram last June had it not been for LIVESTRONG.
For that, I ask that you consider making a donation to LIVESTRONG.
To do so, simply go to http://laf.convio.net/goto/RicaRocksAustin2012 and click on "Donate to Rica!" on the left. If you need to mail in your donation, just click on "Read More" towards the bottom of the screen and then you'll see a link for a printable form.
I hope to bring in 100 donations for LIVESTRONG by end of day Sunday, 12/25/2011 in my effort to raise $25,000 for the Lance Armstrong Foundation. Donations of any size are very welcome.
The other day, I had my appointment with my plastic surgeon, Dr. Nordberg. The good news is that not only did I get the all clear for chemo on Friday, but we were able to "do a fill" on the left implant, so now the temporary boobs are the same size. Small victories. I'll get to that in a moment.
While I was in his chair, he commented on the wigs I wear - I think I'd worn a different look each time I've come into his office. He remarked that I had an unusually upbeat approach to my cancer, and I told him that, quite frankly, the whole thing was so ridiculous, so it was very hard to take it seriously. Of course, there are moments of terror, depression, etc. But then I sit back and think about how stupid the whole thing is. And I said there are two ways to approach cancer: Either you can get depressed, fearful, scared and get so overwhelmed at what a terrifying ordeal it is, or you can treat it like your own personal fart joke - something so absurd that you can't help but embrace it, temporarily, and then rid yourself of it as soon as possible.
For example, you can't help but smile when you realize that...
In fact, this iddy biddy cactus
has more "hair' than I do.
Chemo (if you lose your hair) makes you look like a dog with a bad case of mange. Any treatment that can do that to you is G-d's sick sense of humor rearing its ugly head.
Cancer does not make you immune to stupid people. Though it should.
Cancer turns you into a 4-year old child with the flu.
I've evolved into a cactus. I get potted, I'm left with only a few spikes coming out of my top, and they are sharp and off-putting.
Some mornings I wake up and wonder if G-d, or my body, has used a Magic 8-Ball to determine how the day will go just for giggles. That's how predictable cancer is.
All of a sudden, body parts are addressed as things that can be disposable. And I don't mean like the obvious things like "breasts," "testicles," etc and other body parts that identify the cancer. I mean things like nipples, eyebrows, finger nails, etc.
You can tell when you're dehydrated, not because you feel thirsty, but because you can see how sunken-in your temples get when you look in the mirror.
When watching a hospital program on television, you no longer wince, in fact, you laugh at the feeble whimpering the mock-patients express when getting a single needle stick, thinking, "Wimps... "
Anyway, I'm sure more of these little odd observations will arise as I continue this journey... Feel free to share any other gems you've come across along your way.
My goal? To have 100 donations by the end of Christmas Day - 1 for every mile I've pledged to ride in Austin, TX in 2012. I have no idea if I'll be able to do it, but that's my goal.
Remember, even though the fundraising is for my 2012 efforts, your donation will be tax deductible for 2011!
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.
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.
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.
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.
In a longer-term project, like this one, you don't know if there is a bigger communication plan.
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.
