Is there such a thing as "Cancer Free?"

In the week or so it's taken me to recover from the emotional roller coaster my "Big C" Marathon caused me, I think about what a friend reminded me when I expressed my reborn anxiety - "But, Rica, you're 'Cancer Free.'"

Is there ever such a thing as being "Cancer Free?" It's not like I'm a can of soda - when I have zero sugar in my ingredients, and there is a governing body that approves of the label, and I'm declared "Sugar Free," therefore I feel sugar free. I would just BE sugar free. 

The trouble is, I remember what it was like to truly BE Cancer Free.

Maybe it's a little more like being decaffeinated coffee - I once had caffeine, but it has been stripped out of my being. Caffeine was inherent to my being coffee, but after an extraction process, I'm now lacking my caffeine, left a sad, watery shell of who I used to be.

So would that really make me "Decancerated Rica" as opposed to "Full Strength Rica?"

Still, no. Because the coffee only went through two states - Caffeinated, then Decaffeinated.

I actually went through FOUR states - 1) Rica 2) With Cancer, Blissfully Unaware Rica, 3) Full-on Cancer Rica, 4) Now "Cancer Free" Rica. But, note, State 1 does NOT equal State 4.

I will never, EVER be "Rica" - with no state of cancer at all. State 1 will never exist for me again.

I have been permanently changed. I have the scars to prove it. There isn't a morning that goes by when I am not immediately reminded of the fact that I had cancer in my body. Reminders surround and are within me. From the fact that the house has been under 60 degrees every morning I awake this week since the polar vortex came into effect and, while I have goosebumps all over my body, my breasts are just there and my nipples no longer react nor do they perk up - because they are numb chunks of thigh skin, tattooed in a faded pink. When I rub my eyes, and begin to scratch itches on my shoulders, and I brush against my cleavage, the skin on the top of my right breast senses my finger tips normally, but on the left side, there is an irritating tingle, barely cognizant of the fact that it's not an unpleasant scrubbing action triggering a response, but a gentle touch.

My bones and joints ache more than ever in this chilly weather. I cannot tolerate cold the same way I used to before chemo. While I was always a "Summer Baby," and I hated Winter, I could endure it. My elbows didn't ache from the core. My knuckles didn't stiffen. My spine wouldn't surge with prickly cold. But it does now.

Once in the shower, I realize that I really don't have to do a self-breast exam anymore, even though it's become second nature. Instead, as I begin the futile, and irrelevant exam, I feel the horrible horizontal scar that I had assumed would have completely disappeared on each breast where my areolae used to be. I feel the strange pucker around that line, so the breast skin doesn't hang correctly on the lower right half of the right breast, and there is still a tough, thickened patch of subsurface scar tissue on the inner side of my left breast.

As I sit on the commode, facing the cabinet with glass doors in which I kept my feminine products, I see the package of maxi pads I'd picked up right before my oopharectomy, out of habit, forgetting that just a couple of days later, would become irrelevant and would sit dormant unless a visitor needed one, or my daughter has her first "visit from her cousin." I see the last of my tampons, which haven't budged since April.

When I make it back to my room, and I sit at my vanity, I measure the length of my hair. Now, it's just tickling my shoulders. I pull at the longest piece and measure to see how long the curl now unfurls, and to see if it hits my shoulder blades yet. I shake my head, as I still have a way to go. I reach back and see if I can reach the back of my hair. It's nowhere to be found. I have at least another year to grow my hair to the length where I felt comfortable.

Before

After (Straight)

After (Curly)

I try and remember what tasks I have to do today, and I find that I can't remember what they are. I take a minute and try and remember what day of the week it is. I have to resort to peeking at my iPad or iPhone to check the calendar. Since chemo, I still find that I have trouble remembering which day of the week it is. (Sorry, Dr. Tepler, you can't tell me there's no such thing as chemo brain.)

I look in the mirror. My eyebrows have grown back, and they are starting to get unruly. But I'm scared to tweeze them. And, now that they are back, I find I can't pencil them in as well as I used to when there were no hairs there. Ironically, my eyebrows look far less realistic now when I try and do them than they did when I had no eyebrows.

I see a double chin where there wasn't one before. I see a puffy version of myself. When I started chemo, I was told to eat when I could, as likely, I would lose my appetite. Ironically, of all the cancer patients I knew, my appetite never died. In fact, I ended up gaining weight. Whether it was from the steroids I was put on heading into chemo, the fact that I was pretty much "benched" from physical activity after I tore mastectomy souchers and gave myself an infection, and never recovered from the atrophy that induced, or that my energy post-chemo has never recovered, I am in a terrible physical condition.

For the first time in my life, I'm not physically fit. I was never a twig, but I was always fit. Not since chemo.

And, at this point, it isn't even a full hour since I've awoken, and I've recounted how many reminders that I had cancer?

How can that be called "Cancer Free?"

This year, I will be "Cancer Free" in March. Oh really?

So, here's what I've realized:

I don't care if you survived the surgeries and treatments a day, a week, a month, a year, or a decade ago - we are never "Cancer Free" again. We may be "Decancerated," but we'll NEVER be "Cancer Free" again.

Sh*t Girls Say to Girls with Breast Cancer

My friend, Jody, posted this video on Facebook this morning, and what was scary was that the number of things that have been said to me absolutely outnumbered the things I'd never heard before.

The sad thing is that, more often than not, it's me that mispronounces everything. LOL!

Enjoy!

Jennifer does some great work! And it looks like she'll have a web series on her website, www.HappyCancerChick.com

Of course, I'm thinking of a sequel... "Sh*t GUYS say to girls with breast cancer."

My response to Outside Magazine's article "It's Not About the Lab Rats"

Mr. Gifford,

I read this article just 1/2 hour after returning from my oncologist's & plastic surgeon's offices reviewing the next steps of my post-chemotherapy treatment. My heart is racing, I have tears in my eyes and an adrenaline surge that could get me up the Alpes d'Huez, despite having endured 5 months of chemo and off the bike. A chemotherapy treatment that was scheduled around my participation at the LIVESTRONG Challenge in October. You see, I've been a LIVESTRONG Leader and fundraiser for going on 3 years, now. Long before my diagnosis in July. Ironic, I know, that I'd be such an ardent advocate when I hadn't fought cancer myself. But I was a new cyclist, I had a mentor who was diagnosed a second time, just as Lance was launching his comeback, so I got involved.

And then I met the people in LIVESTRONG. Not just the staff, but the people who were moved by LIVESTRONG. The ones who had survived cancer. And the ones who supported those whose time ran out in their fight and were carried on the backs of LIVESTRONG Leaders, the staff and others affiliated with the organization. It was clear that, yes, as a marketing professional, I recognize that the organization is incredibly savvy, creating buzzwords and catch phrases that stick. But there is a reason they stick. Because they have meaning to us.

Do you want to know why every dollar donated to LIVESTRONG is so important, as opposed to pure clinical research? And why your arrogant article is worth nothing more than bird cage lining to a survivor? Of course, cancer needs to be eradicated, and the only way that the disease itself will disappear is through medical advances. But the effects of cancer on the people who have it, who have fought it, and those that surround that individual can never be erased by a new chemotherapy, a new surgical procedure, or a berry in the rainforest. The only way that kind of healing can happen is empowerment. Hope. A sense that there is something one can do when you're not in a research lab. When all you have are two legs, a heart, and the desire to do something.

Awareness. If it weren't for their awareness campaigns, I would have never gotten that mammogram in June. You see, I'm well below the 40-line. It would have been a few years before I had a routine mammogram. But it was reminders about taking care of myself, early detection etc, that LIVESTRONG promoted that made me, as a LIVESTRONG Leader, feel obligated to take the opportunity to have a free mammogram when the office park where I work held a health fair. Had it not been for LIVESTRONG's awareness campaigns, I wouldn't have done it. And the very tiny, but highly aggressive invasive breast cancer that was set so deeply in my breast, that no manual or routine breast exam would have detected until it was dangerously too late, would have never been detected in time for my relatively "simple" treatment. A treatment which included a double mastectomy (as I also discovered I had the BRCA II genetic mutation), a 2-week stay in the hospital with an infection and another surgery, 5 months of chemotherapy, and now, two more reconstructive surgeries and 5 years of hormone treatment.

That's where LIVESTRONG plays, in my opinion, the most valuable part in the fight against cancer. Lance never said, "I'm going to cure cancer." Find me one pamphlet that LIVESTRONG has issued that says, "Our mission is to find the cure for cancer." But it does say, and it does achieve, that it will give the cancer fighter, and those around them, the support, navigation, and motivation to find a reason in themselves to survive.

There is no doubt in my mind that if it weren't for EVERYTHING that LIVESTRONG does, from the silicone wristband I wore throughout every surgery, and gave very clear instruction to all nurses and techs that over my dead body were they to remove that band from my wrist while I was unconscious, that reminded me to be strong throughout this hellacious experience, to a Tweet from Lance and others who have been through this the day after my double mastectomy, that I would not have been able to come through this fight sane, hopeful, and with the tenacity to live on beyond cancer.

How DARE you write this, as though LIVESTRONG were nothing more than a whimsical revenue stream for a selfish man? Mr. Gifford, if you had seen the smiles on my children's faces in October when we met Lance, smiles like I hadn't seen on their faces since before I told them I had cancer in July, you wouldn't be questioning the work that LIVESTRONG does. Lance and the organization promises hope, drive, fight, and survivorship. And they deliver on that promise. My 13 year-old son, who has been through hell and back, rode 90 miles in October. Do you know why? Because, after seeing so many people fighting so hard throughout the Challenge, who had been through so much, and knowing how badly I wanted to ride beyond the 10 mile mark but couldn't, he explained, "I rode the 90 miles for my mom because she can't."

My 10-year old daughter was scared every day that cancer was going to kill me, despite reassurances from doctors, friends, family and me. It wasn't until she met Lance, she spoke with the staff at LIVESTRONG, who treated her like gold, and saw all those other mommies who had breast cancer, too, ride through the Yellow Mile and collect their yellow roses, that she realized I wasn't going to die, and that I'd be riding my bike, and living and loving life just like before. And that she didn't have to worry that I was going to die. That weight on her shoulders was too much, but it was LIVESTRONG that helped her lift that off of her shoulders and see how strong she, and I, were and that we'd make it through this.

Komen, by the way, whom you laud in the article, did NOTHING for us. I've long been skeptical of their "pinking" tactics, but when I was diagnosed, I decided to let bygones be bygones and reach out to my local office to see what support they might have, programs, etc. I called, left messages, emailed repeatedly. What was the response? They turned a blind eye to me when I reached out to them, looking for help, advice, and hope. All I got was a barrage of emails asking me to donate to them.

I pray that you never have to face this disease head on, personally. But if you do, try it without Lance,   LIVESTRONG or the programs and materials that they provide by your side for just one day and see how well you do. I guarantee you that not long after that day, you'll be wearing yellow silicone on your wrist soon enough. And, hopefully, publishing a retraction and an apology to those of us who feel so incredibly grateful for LIVESTRONG and to the 28 million living with cancer today that Lance and the good people at the LAF work so hard for every day.

- Rica Mendes

South Salem, NY

When I grow up, I want to be a Superhero... Who knew?

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.

Wish I'd thought of that...

My cousin, who took those lovely portraits the day before my surgery, sent me the following cartoon:

I've since emailed it to Dr. Nordberg and informed him to stock up on pink Mardi Gras beads...

(Cartoon is on xkcd.com)

"Welcome to Our Ool"

When I was in 5th grade, my best friend was an Israeli girl named Sigal. This was because in 5th grade, no one else in my class was willing to admit publicly that they were my friend. Hell, that was the status quo until we graduated 8th grade. I think some of them may be willing to admit that they were my friend, now, but back then, no way. You'd be branded a freak. A mutant.

I'm certain Sigal was the only one who was willing to admit it because she didn't know any better about the the fact that the stigma of being friends with the "corroded" girl would mark you for life. Then again, Sigal transferred out the next year, so she went relatively unscathed by being my friend, socially.

As a result, I went to her house for what seemed to be a daily play date. Her mom would make us falafel and chips (which, for years, I thought she made from scratch until I went to Israel and stayed with them for a free shabbat when I was 18 and I learned that her mom's falafel, in fact, came out of a box). And in the backyard, they had a pool. With this sign:

Unfortunately, it seems that my ancestral gene pool did not share the same philosophy as Sigal's backyard pool. And it would appear that it is my father's side of the family that subsequently peed in it.

Today, I got my genetic testing results. This testing determines whether or not my breast cancer is a hereditary trait, and if the possibility of recurrence as well as developing a slew of other fun cancers is greater than the average Joe.

Now, genetically speaking, I'm a mutt. On my mother's side, we have non-Jewish German (my grandmother, remember, converted to Judaism) and Russian Jewish. But no family history of breast cancer.

On my father's side, we have primarily Spanish-Portuguese Jews, and that had been the case for hundreds of years, until my grandfather decided to marry a German Jew. He was the black sheep of the family, I understand that family members stopped communicating with him as a result. This was a huge insult - to stray from the Spanish-Portuguese community. And who knew? His future generations would pay the consequences of his hereditary betrayal. It is his side of the family that has the history of breast cancer, seemingly, from my father's mother's side of the family.

I'm BRCA2 positive for a deleterious mutation, which means that gene that should safeguard my body against these kinds of cancers is broken. Defective. Yes, it's now official - I'm a mutant. Only this mutation doesn't qualify me to be one of the X-Men nor a member of the Brotherhood of Mutants.

It's a genetic tattoo. I've been branded "6174deIT," like a tattoo on the inside of my arm. Despite the Sephardi lineage, genetically, I'm an Ashkenazi Jew with a death sentence. I've been put into that line out of the cancer cattle car. The question is, what is my out? How do I escape? And how do I save my children?

Here are the "choices" I get to make, and the fates I've damned my children to. Call me Sophie:

• If I do not have a bi-lateral mastectomy, I have a 12% risk of a breast cancer recurrence within 5 years of the first.
• It is recommended that I have my ovaries removed ASAP, preferably by age 40, and without question, by age 45 as I have a 27% risk of ovarian cancer by age 70 if I do not have them removed. And there is no real way to screen for ovarian cancer until it is well developed.
• I have a 7% risk of pancreatic cancer by age 80, though, if there is pancreatic cancer in my family history, which will be tough to prove as many were lost before we could find out, that risk can be higher.

Therefore, while I haven't consulting my surgeon, the most logical, detached choice I have is radical, bilateral mastectomy and having my ovaries removed within the next few years.

And now, onto my children's choices. By age 20, they should be genetically tested and then they begin the roller-coaster.

• For my daughter:
• She has an 84% risk of breast cancer, as well as all my risks.
• She will have mammograms done annually from between ages 20-25 for the rest of her life.
• She'll be presented with the option, at an ungodly age, to consider a voluntary double mastectomy.
• She'll be asked to take our family history into consideration when it comes to the age at which she wants to start a family - she will likely not have the luxury of deciding to wait until she's in her 30s without taking serious precautions, as by 40-45, she will likely be told she should have her ovaries removed.
• For my son:
• He has up to an 8% risk of male breast cancer.
• He will have to have breast exams starting between ages 20 and 25.
• He has a 20% risk of prostate cancer by age 80.
• He has an increased chance of contracting other cancers.

I'm a Sephardi trapped in an Ashkenazi body. And a mutated one at that. And what's worse is that I've likely passed on this tainted genetic legacy onto my innocent children.

What have I done?