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Wednesday, November 28, 2012

Hair Today, Gone Tomorrow

"How you doin?" in my best Wendy
Williams voice. This was August 2009,
right after I started chemo, at the wig
 salon where Wendy is rumored to shop!
Anyone who has read this blog knows how I feel about my hair. I was VERY sensitive about losing it and banned everyone around me from talking about hair--even if they were just complaining about their own hair! ("At least you have hair" is all I could think.) I have to laugh about it now because some of my friends still get nervous talking about hair around me since I've been known to flip out on them in the past...but hey, I'm a work in progress!

I'm not going to lie, hair was one of the first things I thought about upon my inital diagnosis. The idea of being bald frightened me almost as much as the cancer diagnosis itself. Today, although my hair has grown back and it's actually softer and healthier than it was before, I live in fear of losing it again, so I can't fully enjoy it the way I wish I could. Some days I still look in the mirror in shock to see actual hair growing out of my scalp! All those years I practically destroyed my hair by coloring it, relaxing it, flat ironing it, crimping it, braiding it and lamenting over the fact that it never looked the way I wanted it to, I never imagined that one day I might not have it. So I try to keep it all in perspective. Anytime I find myself complaining about my hair, I have to remember moments like the day I ran into a Rite Aid around the corner from my house practically in tears. It was an extremely windy day, and I was simultaneously trying to hold on to my wig and hold my skirt down from blowing up in the wind, so I ran into the drugstore to escape. I just knew everyone walking down the street could tell I was holding on to a wig. By the time I made it home that day I was a sobbing mess, terrified that my wig might somehow fly off in the wind (I realize now that probably wouldn't happen) and my skirt would fly up (probably could happen) and I would be exposed to the world.

Getting my hair braided before
the wig placement
So I was both amazed and inspired to see Diem Brown, former star of the Real World/Road Rules Challenge on MTV and two-time ovarian cancer patient document her hair loss with a video on People.com. Diem had beautiful long blond hair before she lost it to chemo back in 2006. I remember watching MTV as she removed her wig on national TV during a swimming challenge. Not having any idea I would go through the same journey a mere three years later, I remember feeling sorry for her and thinking, "Damn, I could never do that." Diem beat ovarian cancer, started an amazing gift registry for medical patients called MedGift and went on to become an entertainment host in LA...and her beautiful long blond hair grew back. I follow Diem on Twitter and when she reached the pinnacle five-year survival mark, I admit it, I was jealous. I was jealous that she could finally put the fear of cancer behind her and focus on more important things in the world like Kimye aka Kim Kardashian and Kanye West (I kinda love them together - it's like they're made for each other!) with her job in LA. So imagine my shock (and guilt) when I learned that Diem had relapsed--seven years after her initial diagnosis. This is NOT supposed to happen. She was a survivor! After five years you're supposed to be able to breathe easy and finally move on with your life. Unfortunately that was not the case.

The final result. I'm smiling because
I still have my hair and thought
I would never have to wear the wig.
Diem has been documenting her second battle with the big C with blogs and videos on People.com. She also went public with her controversial decision to delay treatment so she could harvest eggs first. Three years ago I might have said, "Girl, forget those eggs, you need to start chemo!" But now I get it. Cancer doesn't get to win. Having a family is so important to many people and by harvesting her eggs, she is doing what she feels in her heart is the right thing to do. In the video below, Diem shows how her hair starts to fall out after chemo and it's heartbreakingly real. I can't even begin to explain how horrible it was to look in the mirror and see an unrecognizable bald girl staring back. Honestly, I remember the day the last of my hair fell out and every day after that is like a blur...I literally don't remember how I looked without the wig...I must have mentally blocked out that visual. So I admire Diem so much for having the strength to put herself out there in such an incredible way.

Diem's video of the stages of hair loss during chemo:



And speaking of hair, I've been blogging for Carol's Daughter's new website TransitioningMovement.com about my own hair drama. They are launching a new web series for the website called THE CURL. It's the first show of its kind, a show that, when put together, defines, entertains and exposes viewers to natural hair terminology and hairstyles in a comprehensive way, while getting a sneak peek into the lives of women who share their own candid, incredibly diverse hair stories. This series is for every woman-sister-mother-friend who has ever wondered,“What exactly am I going to do with my hair?” and “How can I achieve my own, unique look? The series is launching next week!

Check out the trailer here:

Tuesday, October 23, 2012

Freezing Time

My apartment looks amazing on TV! Lighting is everything 
Thursday, November 1st marks my 30th birthday. And as I approach this milestone birthday, I can't help but feel the same way I have felt for the last three birthdays...shocked and disappointed that I'm celebrating another birthday with cancer. I've been dealing Hodgkin's Lymphoma for so long now, it almost feels normal...except it's totally NOT normal! When I was diagnosed at 26, I expected that by the time I turned 30, this cancer mess would be nothing but a nasty memory. But instead as each year has rolled by I've realized that life (or maybe just my life!) just isn't that simple.

Some people may say that I'm lucky to see 30, considering that I was diagnosed with cancer more than three years ago. And while that is very true, it's also heartbreaking to feel like you will never get away from cancer. I. Am. So. Over. It. All of it! It makes me sick to my stomach to think of how many times I thought, "by this time next year I'll be in remission!" only to reach next year and still be fighting. I know what the alternative is, so of course I'd rather have cancer for 20 years than not be here at all, but with every birthday, every anniversary, every holiday, every New Year's Eve, I always wonder where I will be in my life the following year.

Even though I have done my best to live a positive (and of course fabulous) life despite cancer, some days I can't help wishing that I could go back to 26 and freeze time right before my diagnosis, right before my life was turned upside down and changed forever. So it's ironic that "Freezing Time" is the name of the story that I was featured in tonight on NBC's Nightly News. The story is on ovarian tissue cyropreservation and how this amazing procedure is offering female cancer patients options for having a family after cancer treatment.

I met with Dr. Kutluk Oktay, one of the pioneers in the procedure, in Feb 2010 right after my first relapse. He performed the ovarian tissue cryopreservation surgery in an effort to save my ovarian tissue before my autologous stem cell transplant. In the midst of everything else I was dealing with, removing one ovary for the future seemed pretty simple. Save an ovary, put it on ice, go kill cancer. Done and done. Dr. Oktay said I actually woke up from the surgery smiling! I tend to be very happy after anesthesia, go figure.

I didn't think about my fertility that much for the first two years of cancer treatment. But now, on the cusp of 30, I think about it all the time. More and more I find myself thinking about babies and how/if/when we can start a family. While I am in no rush to have a child right at this moment (and frankly neither is Ross!), it's scary to not know if it's even possible...especially when everyone in the world (or at least on Facebook!) is pregnant. And getting older is only a reminder that I don't have forever. The ovarian tissue procedure is still very new and nothing is guaranteed, so my ovarian tissue may or may not result in a live birth, and in fact I don't even know if I can carry a baby myself, so there are a lot of variables here. But regardless, I'm glad I did it because no matter what happens, it gave me a little spark of hope.

Watch the segment below (Dr. Nancy Synderman said my name! I love her!!):

Visit NBCNews.com for breaking news, world news, and news about the economy

Monday, October 15, 2012

Stronger

This video was shared on Facebook and makes me smile (and cry a little bit). A young cancer patient named Megan Kowalewski made this video after she relapsed with Hodgkin's Lymphoma and it was shared over 15,000 times on Facebook.

I always loved Kelly Clarkson's "Stronger" but the song becomes even more poignant when the lyrics are applied to the cancer journey. I watched this video at least five times and loved it every time. I love her strength and spirit, and wish I could have been there dancing with her! The only problem is that when my spin instructor plays "Stronger" during spin class, I always think of this video and then tear up a little bit.

Enjoy!

Thursday, October 4, 2012

Is the Breast the best?

Save the Ta-tas!
Gotta love the branding


Ahhh, it's October AKA Breast Cancer Awareness Month. 

This is the time of year where men and women alike proudly don pink ribbons, pink t-shirts, pink socks and more. Beauty companies roll out their exclusive pink products, NFL players sport pink cleats and wristbands, and the White House is illuminated in pink light for an entire month. Walks and runs are organized, celebrity galas are scheduled, and companies hock products where a small percentage of the revenue goes to breast cancer research. On one hand it's amazing to see the entire country focused on one disease, more information about self breast exams, and increased coverage on survivors. And on the other hand—perhaps I'm just cynical—I can't help wondering where the love will be come November. Will everyone put away their pink ribbons until next year? For the cancer patients who are dealing with the disease everyday it's more than an excuse to dye your hair pink "for the cause," it's the fight for your life and you need support the entire year. 

One thing about me—I'm ultra sensitive when I see or hear the big C-word—which is why I can't watch the Showtime series with the same name and refuse to watch "Breaking Bad" even though I've had the following conversation with several of my friends:

Friend: "It's such a great show! You should definitely watch it!" 
Me: "I can't watch that show, the chemistry teacher has cancer! I get enough of that in real life, that's why I watch 'Real Housewives,' mindless, ridiculous reality TV. No cancer." 
Friend: "Oh, that's right. I totally forgot he has cancer. I think he might be cured now." 
Me: "Grrr, how nice for you that you can forget about cancer."

So October always makes me feel sad because cancer is everywhere. Everywhere

I've found that if I mention offhand to a stranger that I have cancer, automatically they ask, "breast cancer?"  "No," I say back, offended that just because I'm a woman, I have to have breast cancer? I know it's not their fault, breast cancer awareness is a staple in our society…other cancers just don't get the same amount of attention. September is actually Blood Cancer Awareness Month and I had to google that to be sure! What ribbon should I be rocking in September? Ummm….I had to google that too! Because although red is the color of blood (nice image), HIV/AIDS owns the red ribbon, so lymphoma's official color is…wait for it…lime green. Random. I've still seen red and even orange (again, random) ribbons associated with the disease as well. So maybe I'm just bitter that "my disease" doesn't have the same great PR campaign as breast cancer.

But is breast cancer better because it gets more attention, and as a result more money? Let's face it, awareness equals money, money equals research (hopefully, unless you are Susan G. Komen) and research equals drugs, treatment plans and cures. It's hard not to feel overshadowed by breast cancer (I can only imagine how people with very rare cancers feel) and yet, as a woman, I still fear getting the disease myself. As if I don't have enough to worry about…women who receive radiation in the chest (which I haven't received yet, but may in the future) technically have a higher risk of breast cancer. So even though October isn't "my" month, when you have cancer, every month feels like cancer awareness month!

Thursday, August 23, 2012

Be A Match!

Me and Robin Roberts! Why do I look so short?

Yesterday I had the opportunity to appear on Good Morning America and model an outfit inspired by Taylor Swift's fashion style as part of a Redbook fashion segment. My dreams of being on TV are coming true, one step at a time :) 

I really hoped I would have the chance to meet Robin Roberts while at GMA (my mom and I both love her!), and I mentioned to the GMA producer that I am living with Hodgkin's Lymphoma and have undergone a transplant, similar to the one that Robin will have to endure for her blood disorder, MDS. I was so sad to learn about Robin's MDS diagnosis, she had just reached her 5 years as a breast cancer survivor and it just doesn't seem fair that she should have to go through something else! It's scary, but sometimes the chemo and radiation from one treatment can cause a secondary cancer. They tell you this when you are first diagnosed, but you don't have a choice, you have to proceed with treatment to kill the first cancer, so it's hard to wrap your head around the possibility of a second cancer. MDS is considered pre-leukemia and while it's not cancer yet, her doctors are being aggressive and proceeding with a bone marrow transplant with her sister as the donor. 

Unfortunately my brother Garrett wasn't a match for me (I just knew he would be, God's way of showing me how I should have been nicer to him as a child!) but I was blessed enough to find a matched unrelated donor. I've always heard that people of color, especially black people, have a hard time finding donors. But when I mentioned that to a transplant doctor at Mt Sinai (because I do my research!), he said, "that's not true!". Um, ok. That surprised me because that is what the media always says, but who knows? I actually matched with 3 people and one is a 10/10.  As it turns out, you don't have to be the same race to match, so my donor could be another race. Regardless, there is a lack of minority donors in the registry and many people have died as a result of not finding a match.

Ironically, right after I sashayed around Times Sqaure in tiny red shorts (see video below!), Robin interviewed a woman who had a bone marrow transplant a year ago after her leukemia diagnosis, and she was meeting her donor for the first time. What a crazy coincidence! The woman happened to be black and her donor was a white male. I watched the interview in the GMA green room feeling amazed and hopeful, yet also sad at the possibility that I may have to do another transplant. Right now we don't know when and if I will, but the thought still hangs over my head. It was great to see the donor and the recipient meet for the first time...he literally gave her life! What an amazing gift.

Afterwards, the producers told me to try and grab Robin as she walked back to her dressing room and thankfully I did. I quickly told her my life story and made sure to tell her that my dad is from Mississippi (like she is) and my mother prays for her every day. She hugged me and thanked me for telling her my story, she was so warm and sweet, and of course I asked her to take a picture with me!

Robin is lucky to have her sister as a donor, the woman on GMA was lucky to have a donor (see that video below) and I am lucky to have a donor as well, but not everyone is so lucky, so please sign up for Be A Match and join the national bone marrow registry! It's so easy to do (I signed up in college! Of course I'm not eligible now though…sigh) and it's a fairly easy procedure…plus you get to say you saved someone's life. How cool is that?

My appearance on GMA:
http://gma.yahoo.com/video/music-26594262/get-the-look-taylor-swift-s-fashion-sense-with-conor-kennedy-30351888.html#crsl=%252Fvideo%252Fmusic-26594262%252Fget-the-look-taylor-swift-s-fashion-sense-with-conor-kennedy-30351888.html

Bone Marrow Donor:
http://gma.yahoo.com/blogs/abc-blogs/cancer-survivor-meets-her-bone-marrow-donor-first-121314673--abc-news-health.html



Thursday, August 2, 2012

#IStandUpFor...

Today I got an email from Stand Up To Cancer, an organization that I subscribed to in 2008 after watching the 1st annual telethon on TV in tears.  I remember seeing Patrick Swayze looking very frail but determined to share his story.  He spoke about how important it was for scientists to work together to find cures for cancer, and how the fundraising efforts will help them work faster to develop new treatments. From celebs to regular people, everyone who spoke about their own battle or a family members' battle really hit home with me. I wasn't oblivious to the tragedy of cancer at the time, but it still felt like something that happened to "other people," because I had never personally watched someone go through treatment. But I wanted to help, so I donated money to the cause and joined their email newsletter database.

Flash forward a year and I am diagnosed with cancer. Strange how life works sometimes...I wonder how many other people donated and then were diagnosed themselves? The email newsletters that I would get every few months, detailing groundbreaking triumphs in cancer research now had a whole new meaning.  Now I was a recipient of the dollars that went into cancer research, research that created drugs to save my life. I often think about the day I watched the first broadcast, horrified at what some people had to go through, feeling so bad for them, but never imagining that it could happen to me too.

Yet here we are. I'm a great example of the fact that cancer can happen to anyone.  No sex, no race, no religion, no class, and no age is exempt. It feels like it can't happen to you...but sadly I'm here to say that it can. As I struggled to identify myself with the newfound cancer community, I thought about buying one of the super cute Survivor t-shirts that Stand Up To Cancer sells on their website, but I wasn't sure if I was ready. It's a pretty big deal to tell people you have cancer. Most people aren't expecting a 20-something woman who looks healthy to say they have cancer. Their eyes get big, their body language changes and they start to search your body for signs that you are "sick." So I tried to avoid it as much as possible, pretending that I was healthy to avoid seeing those sad eyes.

Now as I've become more open about my cancer journey, I realize how important it is to share your story. The only way I knew half the side effects/symptoms/issues that come with treatment is because of blogs, websites and Facebook groups. Other young people affected with this disease shared their experiences and often gave tips about how to get through it.  People that I never met in person instantly became like best friends, they made me feel like I wasn't some freak of nature who managed to get cancer. And I'm so grateful to them, because someone finally got it! Someone understood the agony I felt, the fear, the worry, the stress, the anger of a diagnosis of cancer in your 20s. I felt like I wasn't alone. Thankfully there are amazing organizations that cater to young adults like the I'm Too Young For This! Foundation (I love that name, it's sooo true) and they have events that focus on just living! Imagine that? No matter what you're dealing with in life, you just want someone to get it. (and I definitely need to get a Survivor shirt now!)

Stand Up To Cancer is an amazing organization that has raised an incredible amount of money for cancer research (Katie Couric is a co-founder of the organization--Katie, can I come to your show to talk about cancer??) and they are running a #IStandUpFor Photo Contest, where the question is, "who do you Stand Up for" when it comes to cancer. I entered the contest today, stating that I stand for myself and all the young adults out there who are diagnosed with cancer and feel alone because "it's not supposed to happen to us." But it does, and we need support just like anyone else. It's sooo important! The grand-prize winner will attend this year's Stand Up To Cancer event. The organizers choose the semi-finalists and then the public gets to vote (why does this feel just like the Live! with Kelly contest? I guess I like to enter contests!) so please check out my entry and make comments! (You have to be logged into Facebook to view)

http://apps.facebook.com/istandupfor/contests/261680/voteable_entries/55664170

Sunday, July 29, 2012

Happy Stuff

When my mom used to send regular updates about my health to our network of friends and family, every once and a while she would send an email titled "happy stuff." Instead of detailing my latest treatment plan and the constant highs and lows I experienced, these emails simply focused on the good things happening in my life. Updates just about me, not that pesky, annoying cancer thing I also had.

My mom continues to send out emails to a smaller group of friends, but I've stopped sending my own update emails because I was tired of being the bearer of bad news. My emails often went as follows: my latest scan wasn't what we expected, we're going in another direction with treatment, I switched doctors again, I'm starting a new drug and it's supposed to be amazing, blah blah blah.... I began to feel like a parrot, saying the exact same thing every time a drug stopped working for me.  And while I'm extremely lucky to have always had another option of treatment, those emails became depressing to write and I felt like everyone who received them was just wondering, "damn, when is this girl going to be healthy?"  Even though I know it's not my fault that this stupid cancer is still inside my body, you can't help feeling like a F-student in a class where most people get As (like that metaphor? AKA, most people are cured from Hodgkin's in the first 6 months, I've had it for 3 years). So for my own sanity, I just stopped. I wasn't always a straight A student in school, but I always knew how to buckle down and study to get good grades, I know how to present myself well in interviews to land great jobs, and I know how to put in work to achieve the things I want in life. Yet the fact that there's nothing I can personally do to overcome cancer (besides prayer and trusting my amazing doctor), has made me feel like a failure in a way I've never experienced in my entire life. So it became easier to not have to broadcast to everyone what a failure I was, and how I haven't been able to "beat" this thing yet.

Instead of dwelling on the "bad stuff," I've decided to take a page out of my mom's book and recognize the "happy stuff."  The reality is that despite my health situation, I've had some amazing moments in the past few years. And I think the lesson is (because you have to learn something after getting cancer right?) that I can still have a good life even while living with cancer. One great opportunity that I had was a special photo shoot with my mom. My mom's friend Whitni put us in touch with her friend Dawn Freeland, a wonderful photographer in Charlotte. We both wanted new headshots (my mom owns a marketing consulting firm in Charlotte and she's always in the news so she needed one for business purposes, and I'm going to be famous one day...lol...so of course we needed headshots!), so Whitni set up the photoshoot and a makeover (I'm a sucker for professional hair and makeup, a pair of false eyelashes makes my day!) and the experience was great.

The photo shoot reminded me of some of the great times my mom and I had while wedding planning, where we were focused more on the color of the flowers than cancer. We laughed, joked and had some mother-daughter bonding time while Dawn took beautiful photos of us, just in our element.  Those moments I cherish so much because when I look at the photos, I don't see a girl who is sick, I see someone who is strong, confident and on top of the world...she's the girl I want to be!

In an amazing coincidence, Dawn is hoping to use some of the photos to publish in a book to raise funds for cancer research. Everything really does come full circle when you don't even realize it. Some of Dawn's great work is below and my mom's headshot is on her website:
http://www.lockmanbrooks.com/html/about_company.htm





In other happy news, I've been channeling my best Giuliana Rancic and doing more and more TV segments for work. I'm falling in love with TV hosting and I'm so happy to have realized this new passion. While I didn't make it past the Top 25 for the LIVE! with Kelly Cohost Contest, I still have the opportunity to be on live TV, which is both exciting and terrifying! Need someone to talk about entertainment, beauty, fashion, and cancer? I'm your girl! This past Friday I talked about preparing for the fall season (yep, in July!) with some must-have Johnson and Johnson essentials:

http://ireport.cnn.com/docs/DOC-821632?ref=feeds%2Flatest

Here's to more "happy stuff" happening in the future!



Friday, July 6, 2012

LIVE! with Kelly Top 25 Finalist for Cohost Contest!

I am so excited -- and this is a departure from my usual post -- because I just found out that I was chosen as one of the Top 25 finalists in the LIVE! with Kelly Cohost Contest!

The show is choosing one "regular" person to cohost for a day with Kelly Ripa!  This is such an amazing opportunity because 1) I love all things pop culture/entertainment and I am working on my TV hosting career and 2) I have decided to be more open about my cancer journey (yes I know I have a public blog!) but I haven't always been completely open about that part of my life on Facebook and Twitter because, well, I was still ashamed that I got cancer.

But recently after connecting with so many wonderful, young adult cancer patients and trading stories with them and feeling inspired by them, I wanted to do more.  I think my story is such an important one to share because I have been LIVING (not dying, not battling, not suffering) with cancer for 3 years. Sometimes that fact makes me very sad, but on the other hand, damnit I'm in awe of myself! I never knew you could live with cancer this long (I've heard of people living with it for 20 years!) and while the goal is still remission (and I will get there!!), I have come to accept that cancer is a part of my life. BUT, it doesn't define me, I can still go on and live my dreams!!

Sooo, long story short, my dream is to be an entertainment host (I want to be Giuliana Rancic - she was my hero before, but even more now that we are cancer buddies), but I also want to share my story with other young adult cancer patients who feel alone, feel that noone can relate, and think their life is over. I have those thoughts all the time! But then I remember, I'm not alone. Besides my friends and family, there are thousands of young adults (sadly) suffering with various types of cancer, and we all need to know that we're not alone. We can inspire each other to live your best life (as Oprah would say!) and not let cancer take control.  It's taken me about 2 1/2 years to realize this, but I think I've finallyyyyy got it.

So if you're a fan of my blog, if you love LIVE! with Kelly, or if you just want to make a 29-year-old woman with big dreams happy, PLEASE see below!

The producers of LIVE! with Kelly are selecting the Top 10 finalists from the Top 25 based on how many likes/shares/comments on the LIVE! with Kelly website (not on Facebook) AND how much they like each contestant's video.

So here's what you have to do: from today until the end of Sunday 7/8/12, I need as many people as possible to share my video, like it, and make comments on the LIVE! with Kelly website. Even if you made a comment before, you can make another one or Like a previous comment.  Everything helps!

But remember, all comments should be on the LIVE! with Kelly website, NOT Facebook.

Link to LIVE! with Kelly website: http://dadt.com/live/contest/cohostsearch/12/

Link to my video to share: http://youtu.be/mPeTO4abkV0

Thank you!!

Thursday, June 21, 2012

Anniversaries...

I am very into celebrations. Birthdays and Anniversaries are totally my thing...any excuse for a party! I never understood people who don't like to celebrate their birthday...it's the one day that's all about you...I've actually been thinking about what I would do for my 30th birthday for the past 6 years, no joke...it's kinda crazy that it's actually happening this year. So I love to celebrate! I mean I was the girl who had a wig party and a "I pretty much beat cancer" party (albeit it was a little premature, but any excuse for a celebration!)

So when Ross and I celebrated our 1 year anniversary a few weeks ago on June 4th, I was sad to realize I didn't have the same joy that I normally have for such a milestone. No, it has nothing to do with our marriage (although my husband can't seem to make the bed the exact way I would like! He says we have too many throw pillows, and I vehemently disagree, but that's a whole 'nother newlywed conversation), it's just that, for me, our dream wedding is wrapped up in one of the worst things that ever happened to me.  It's so hard for me to separate the joy/excitement/love I felt on our wedding day and throughout our honeymoon without thinking about what came afterwards.

June 24th is the day I almost died from a massive pulmonary embolism. And that date or "anniversary" will always stick out in my mind, forever intwined with my amazing wedding and fabulous honeymoon. I had 20 wonderful days of being married before my life was changed forever. I know that I'm lucky to be here, but it pisses me off to no end that this had to happen. I love looking at wedding photos, but I can't help thinking if we didn't go on our honeymoon, if we just stayed in New York, if I wasn't on birth control, if I had just moved around more on the 9 hour flight (which every time I think about it, I know I moved around a lot, but I still beat myself up about it), if, if if....I pray for the day when I can let it go, but now it makes me so sad to think how I could have prevented it, had I known what was to come.

When people say, "oh my God, I can't believe your 1st year went by so fast!," I always think that my blood clot incident feels like yesterday. I feel forced to smile and just focus on the wedding day, the honeymoon and the great times we have had in this past year, and not focus on the fear and isolation I felt in the days that followed the incident.  But it's reallllllyyyyy hard.

On this date last year I had just returned from Greece, so happy about our marriage and our future, and then three days later my husband of 20 days was forced to realize that he might lose me. The man who has been by my side every step of the way in this cancer journey watched me go from totally normal (talking, laughing, trying on clothes for a trip to the Hamptons) to not being able to breathe and having a team of EMTs work on me--in a matter of minutes. And while I'm eternally grateful for Ross and the fact that he acted so quickly, called 911, made sure I was taken to the right hospital and made the decision for me to have life saving surgery, no new husband should ever have to go through that. I struggle with feeling so guilty about putting him in that position, it's all still so raw and painful, despite being nearly a year ago. I know he's just happy to have me alive, and he doesn't like to talk about that day, but I think about it constantly.

Regardless, I'm still me! And despite the conflicted way I feel about June and the best and worst things that happened to me, I still wanted to celebrate June 4th and my marriage, so we went on anniversary trip to St. Maarten! We spent 4 days relaxing on the beach and drinking lots of margaritas and it was great. As much as I would like to wallow in my emotions (I'm a big pity party person, I like a good, dramatic crying session), my fight isn't over, so I know I need to keep focused on the future--and more incredible anniversaries, birthdays and celebrations.

Soooo...to pick myself up, I relish in the fact that our wedding was featured on Elizabeth Anne Designs wedding website back in January, click here to view. I can't say enough about my fabulous wedding planner Heather Bryson and photographer Tara Mauldin--they really made our dreams (ok, my dreams and Ross's dreams after I told him what I liked) come true!

And our equally fabulous videographer Alan Daly featured us in this video montage of summer weddings:
http://vimeo.com/27508613
Ross and I are around the 1:20 mark, it may take a while to load before viewing. Our final wedding video was 2 hours and such a great memento of the day!







Thursday, May 24, 2012

Faith Over Fear

Two weeks ago I went to back to Charlotte to celebrate Mother's Day with my mom. I always feel like I can breathe easy in Charlotte. I guess it's because it will always be "home" and I feel safe there. Plus, I don't have any doctors in Charlotte and I've never been hospitalized there, in fact the only time I was ever in a hospital in Charlotte was when I was a candy striper when I was a teen (I worked in the maternity ward with all the cute babies and was seriously pissed off that I didn't get to wear a pink and white candy striper outfit, instead it was khakis and a polo).  Sometimes I feel like if I just stay in Charlotte forever, I'll be fine and never have to think about cancer again. Wishful thinking!

When I'm in Charlotte we usually attend church and this time was no different.  As I was getting ready for church I thought about faith and how people rely on it during tough times because there's no other choice. "Choose faith over fear" is a popular quote but it's easier said than done. Fear is so much easier to fall into, while faith takes patience and perseverance. My faith has been tested so many times and each time I think, "ok God, how much more will I have to take?" I grew up going to church every Sunday, but when I went to college and moved to New York after graduation, my church time diminished.  Sundays turned into days I would recuperate from Saturday night and go to marathon long brunches with my friends. I still went to church when I went home, but when my father would ask me if I found a church home in New York, I would change the conversation and just say, "not yet."

So when I was diagnosed with cancer, I didn't want to be that hypocritical person who ran to the church only in their time of need. Of course I prayed and I spoke to God, but usually alone at night in my bed with my eyes full of tears. In those first six months of chemo, I tried to be faithful and I truly believed that everything would be fine, I would be fine and healed very soon.  Then came the relapse. Then came the transplant. Then came more cancer. I started to fall apart. Suddenly I didn't feel like I had anymore faith, because every time I relied on my faith, bad things kept happening. "It's all in God's plan", "He works on His own timeline, not yours" is what people would say. But those words can only provide comfort for so long.

I started going to church regularly in Feb 2010, right after my PET scan revealed that the cancer was growing but before I had the biopsy results. I sent out emails to everyone, praying that the biopsy would be negative and the PET scan was a false positive. I started reading the bible, reading prayer books, using rosaries and holy water (and I'm not Catholic), spreading healing oil on my chest (where all the cancer is), grasping onto every bit of faith I could. Throughout my treatment and after the stem cell transplant I continued to attend church, sometimes crying during sermons and praying extra hard before my next PET scan. I started getting Ross to pray with me because one bible verse said that if two or more people pray about something on earth, than it will be done in heaven.  My aunt sent me prayer CDs that I would listen to, the pastor on the DCs talked about when he was told he had cancer but his faith brought him through. It gave me strength to keep praying. I read Dodie Osteen's book (Joel Osteen's mother) where she talked about her diagnosis of cancer and how she read healing scriptures every morning and never had a drop of treatment. Her doctors say she is cancer free today. Her story sounded too good to be true, but I read the healing scriptures she recommended every night, hoping the same would happen to me.

And then one day I realized that I lost my faith. It happened slowly and I didn't even realize it until one Sunday my parents asked me if I had been to church lately and I said no. In fact I hadn't been in months. In fact I hadn't prayed in months. It was like going to church and praying was a fad and I was over it. I think I was so defeated I just stopped trying. While cleaning out my house I found some papers where I used to write healing scriptures "By his stripes you are healed" over and over again and carry them around with me. I totally felt like the hypocrite I didn't want to be. I did everything in my power to be faithful when I thought I needed it the most, but when I felt like God let me down, I stopped trying.

I'm still trying to figure out my faith today. Some days my faith is super strong -- I mean, I survived a deadly blood clot that would have killed most people. As I said to a friend who is agnostic as I laid in the ICU, "If you didn't believe in God before, you have to believe in Him now." How could I not have faith after experiencing that? And yet, because I'm still not in remission, I have days of doubt. Days of fear, days of worry. Days when my faith is almost non existent, because this journey has been so damn hard.

So I try to learn from other people's faith as I navigate my way back to my own. My parents' pastor is a perfect example. He has always been a great support system to my parents throughout this ordeal and he married Ross and I in a beautiful ceremony with an amazing sermon. But his faith really impressed me when his younger brother passed away from cancer a few weeks ago and he preached at his own brother's funeral. I was shocked when my father told me. I assumed he would want to be the one who was comforted, not doing the comforting. Wasn't he so angry at God? How could he still be faithful and preach a sermon to comfort others when his brother, who was only in his late 30s, died of a horrible disease? Shoot, I was angry for him! Here was another young person who died from cancer. But I guess that's what faith is about.

Ironically, I have two paintings in our guest bathroom that display bible quotes, one has the verse on hope and the other one is on faith (I originally chose the paintings becaue they matched the decor--not because of what they said--I'm so superficial I didn't even read the quotes!) but one day I actually read them and was shocked about how much they applied to my life. 


FAITH - Hebrews 11:1 - Now faith is confidence in what we hope for and assurance about what we do not see. 


HOPE - Romans 5:3-4 - We also glory in tribulations, knowing that tribulation produces perseverance; and perservance, character; and character, hope.


I mean these words were staring at me for months and I didn't even realize it. Now I read them almost daily (while, I admit, simultaneously admiring how perfectly they fit the decor) and its like they were meant for me. So I took it as a sign that I do still have faith, even if it wavers sometimes, it's always there.

Monday, April 30, 2012

Before and After

I find myself constantly thinking of "before" and "after", usually when things are time stamped, like photos or emails or even projects at work. I think about where I was,who I was,and how I viewed life when that picture was taken or that email was written,and how different my life is now. At first I would think about life before diagnosis and life after diagnosis, then it was before the stem cell transplant and after the stem cell transplant and now it's before the blood clot and after the blood clot. Each time something life altering as happened, I wistfully look back in my past and think, "I was so lucky then" (even though at the time I certainly didn't think so) and it makes me wonder...will I look back on today and think I was so lucky now when the next bad thing happens to me?

I don't want to be a pessimist and I try to stay positive but with my history, I feel like I'm constantly looking over my shoulder. And it's interesting to think about my life pre-cancer and how I interacted with the word cancer on several occasions but never really gave it much thought...

Example 1: I signed up for the Be A Match donor registry in 2001. I was a sophomore in college and don't even remember signing up, I probably did to get a free t-shirt or a slice of pizza (life was so easy then...or so it seems now, it certainly didn't seem so then). I didn't think about the registry in terms of possibly saving someone's life one day. I had heard of bone marrow donors but I never knew what a transplant was, what it meant and how intense it is. In 2011 when my doctors were looking for a donor for me, I received a letter in the mail from Be A Match telling me that I matched up with someone and I could save a life. Yes, I matched with myself. The irony was not lost on me as I logged on to the website and asked to be taken off of the registry. Who would have thought that I would sign up for something that I would then need ten years later?

Example 2: After college I moved to New York and interned at an ad agancy where I worked on the Bristol-Myers Squibb account. I was sad that I wouldnt be working on a fun beauty account, instead a boring old pharmaceutical account....because health and medicine is boring, right? Well I had the opportunity to work on the launch of a new breast cancer medication. I produdly put this on my resume,showing future employers that I had been an integral part of the team that launched the ad campaign for a new medication. I forgot all about that experience until I was cleaning out files the orhter day and came across a resume from 2004. The word "cancer" jumped out at me and it was crazy to me that it was typed so cavalierly at the time. I never thought about the lives that medication would save, I just thought about how it would help me get a real job.

Example 3: The infamous yellow Livestrong bracelets. Everyone knew the story of Lance Armstrong and his history as a cancer survivor and soon everyone I knew was rocking the yellow Livestrong bracelets. Ross had two bracelets when I met him in 2004 and I remember stealing one from him and wearing it on and off for about a year. Then when it wasn't "in" anymore, I threw it away. I didn't wear the bracelet to honor anyone, I didn't wear it in memory of anyone, I wore it simply because it was a trend.

Part of me is sad about these examples as a time when cancer was something that happened to other people. I was probably like most people now who haven't experienced cancer first-hand themselves or through a close family member, you know cancer sucks, but you really have no idea. It's not like I didn't worry about it happening to me, I did, but I still was part of the healthy, "normal" world. You take everything for granted until you don't have that luxury anymore. "Before" I was carefree and somewhat naive, "After" I'm a constant worrier and I live with fear everyday of the future. Because I always wonder what will be my next before and after.

Saturday, April 21, 2012

To eat or not to eat...

That is the question. I torture myself constantly about what I am putting into my body. Because often I wonder if something I consumed triggered the cancer cells. Doctors have assured me that isn't the case (it wasn't Splenda that caused cancer although I've stopped eating it just in case) and despite what I read online, spinach won't cure me. But that doesn't seem to stop the intense guilt I feel after consuming fast food on an occasion, because I wonder what those chemicals are doing to me. Especially after the constant ups and downs, I keep wondering, "what can I do???"

My doctor said to eat a healthy balanced diet that is low in carbs. I also started taking multi vitamins and met with a friend who is a nutritionist to see if there are other tips she may have. But it's hard to stick to a specific diet when no one can confirm that it will make a difference! I have started eating kale and I'm shocked that I actually like it, but eating is still a struggle everyday. I know part of it is society, every time I turn on the news there are more stories about "pink slime" in our meat and arsenic in our apple juice (thanks Dr Oz for freaking me out!) so I don't know what to think. As a society we're much more aware of our food and everyone is an expert on what the "right" diet is. Meat or no meat? Do I go vegan and eliminate meat and dairy? I know processed food is bad but it's everywhere! Yet I look around at friends and colleagues as they down these very foods all the time and appear to be just fine. I do try and cook at least twice a week and generally Ross and I are pretty healthy, but everyone has their vices (my recent one is s'mores). And when I think about it, when I was in the hospital recovering from the stem cell transplant, they had no problems feeding me bacon and cheeseburgers.

And it doesn't end with the food...there was an article in a magazine recently about the BPA chemical in plastics and the type of plastics you shouldn't have in your house and how they (could) cause cancer. Yikes, that's all I needed to hear, I went like a crazy person through our cabinets and checked the bottom of each plastic container. A friend also mentioned to me that getting a fabric shower curtain instead of a plastic shower curtain might be a good idea because of the heat during the shower combined with the plastic could release bad chemicals. I took a few chemical ridden showers before I finally gave in and bought a fabric one and now I instantly feel better. I'm also in the process of trying to only buy non-toxic cleaning supplies because I clean our apartment every Sunday and have no idea what stuff I am breathing in. Plus there's the controversy about non-stick cooking pans and how they are bad for you....I could just go on and on...

Now I know what first time mothers feel like when they worry about their newborn baby and the toxic world...I can barely handle my anxiety about myself, so I can't imagine what I'll be like with a child! I miss my blissful days of munching on french fries without worrying about the oil it was fried in.

I try to comfort myself by thinking of uber healthy people that were also diagnosed with cancer --like Lance Armstrong and Sheryl Crow -- they both are the picture of health and yet it still happened. So I guess for some people it just happens, no matter what you do. I was shocked and devastated when one of my idols, Giuliana Rancic was diagnosed with breast cancer. I've been watching Giuliana's reality show since the beginning and cried as she fruitlessly tried to have a baby because I worry so much about my own fertility after this cancer crap. Although we're nowhere near ready to be parents now, Ross and I do want kids one day and as my treatment is prolonged, it makes me think about it even more (actually all the time). I had an ovary removed in 2010 to preserve my fertility but the procedure is still very new and nothing is guaranteed. Plus it doesn't help that a lot of my friends are having babies now. Sometimes it's hard to feel happy for them when they're experiencing something so joyful and I'm still experiencing something so horrible. Then I feel like an awful friend for my jealousy and resentment. It's a vicious cycle and I can only hope that having a baby will come easy after everything I've been through.

Anyway, watching Giuliana's struggle made me relate so much to her because she couldn't get what she wanted either. And when I watched her say she had breast cancer on the Today show, my heart dropped. I mean really? Hasn't she been through enough?? Life just isn't fair. Yet she's another example of a healthy person, she's works out and eats a clean diet and she was still diagnosed with a fairly aggressive breast cancer. So I just want to throw my hands up and say it's in God's hands, because anything can happen, no matter what you do to prevent it.

Thursday, April 5, 2012

Encouraged

Ok, so here we go again! I had a PET scan this past week and I didn't tell anyone except my family because frankly I didn't want anyone to ask me, "how did it go?" before I even heard the results (I had the test on a Friday and didn't get the results until Wednesday, so that's A LOT of time for me to over analyze!) Scan time just sucks. It's a depressing cycle of anxiety, sadness, and stress and I wanted to alleviate as much of that as possible.

And keeping it quiet seemed to work. In the past, in the days leading up to a PET scan I constantly think, "By this time next week I'll know" or "By this time tomorrow I'll know" and I freak out, making bargains with God like he's Santa Claus ("if it's a good scan, I'll never yell at Ross again about leaving his socks on the floor, I swear!). I usually cry, pray and hope that I'll get good news. This time I was a little more zen about it and didn't cry until I was actually in the room, waiting to have the test. Unfortunately I've had a lot of PET scans at a lot of different facilities and each one is different (I've changed each time I changed doctors and my current doctor just switched from NYU to Columbia). In one place I was allowed to read magazines as I waited (you drink a nasty substance that has to flow through your system for an hour before the test), in another facility there were no mags, but I could watch TV. The last test center I went to, no mags, no TV but a radio to listen to. This new test center...nothing! Just me and my thoughts alone in a quiet room. Seriously? I never want to be alone with me and my crazy thoughts. So I started to get a little emotional and then fell asleep (as I usually do!) and was totally groggy when it was time to go in the room with the machine. The fact that the process is different at each PET scan center bothers me the same way the TSA at the airport bothers me (in New York I can walk through a regular detector if I asked to, in Miami I had to get a pat down because I refused to walk through the new see-through-your-clothes machine and was denied access to walk through the regular detector when when I said it was for "medical reasons" Argh!). That's a long drawn out example, but basically nothing is consistent! And that's just at PET scan centers in NYC. When I look online at other cities, I also see that the process is different. I guess in my case it doesn't matter because across the board, each test has always shown disease present in my body.

But anyway, so the news was good, or "encouraging" as my doctor said. He came in with his usual friendliness and said that beautiful four letter word, "good" and my heart was able to climb back into my chest. Thank God! I told the nurse who also came in to take my blood pressure to wait a second because I was sure my BP and my heart rate were through the roof! The rest of the team came in with smiles on their faces as my doc explained the test.

It's all complicated and as I've learned these damn PET scans aren't a perfect test (clearly, given the difference I've seen in how the test is executed). You could get a false positive if you ate carbs before the test or worked out. You could also have very very small disease that isn't detected by the test. But what they usually look for is the size of the lymph nodes and whether they have grown or shrunk and the SUV (standard uptake value) level. Naturally, a higher level is usually considered bad, but when I asked what was "normal" SUV I was told it's different for everyone--so once again, nothings perfect. In my case with this recent scan, lymph nodes had decreased in size but the SUV levels had increased in some areas--however, my doctor feels that this is not necessarily a bad sign. The drug I am taking, Revlimid, increases your red blood cells and makes them better fighters against the bad cancer cells, so the theory is that growth of the red blood cells (aka the good cells) would show an increased level of SUV. This goes against what I always thought (high SUV= bad) but my doctor is incredibly smart and when he explained it, it made sense. However (here I go being a Debbie Downer), the true test will be my next PET scan because hopefully by then, the SUV levels will have decreased. Another encouraging fact is that my ESR ( a bloodtest used to determine how much inflammation is in the body) has decreased, and that is a great sign. I feel like a scientist with all this info (and I'm probably saying half of it wrong because I can only know so much or i start to go crazy)

Given my history of good PET scans when I first start a new treatment and then not-so-good scans afterwards, I'm not ready to pop champagne yet (incidentally I do have a bottle of champagne that my BFF Danielle gave me in Nov '09 when I thought I beat cancer the 1st time...it will be popped one day!) I do want to be positive though. The good thing is that I feel great! I almost feel as good as I did pre-diagnosis and my doctor said that is one of the most important factors. If I felt bad and was losing weight, he would be more concerned. But I'm feeling good and living an (almost) normal life. Case in point: Ross and I were walking down the street the other day when I saw the bus that I needed to take to get back to work and I ran after the bus to catch it before it drove off. Now, I normally don't run after buses I think people look silly running through the street and this past year I literally couldn't even think about running! But that day I needed to catch that bus or I would spend 20 minutes waiting for the next one, so I caught it and when I sat down, I texted Ross to tell him I was sorry I just ran off and didn't really say goodbye. He said no problem, because he remembers a time when I couldn't run, so it was fine. And I remember when I couldn't run either, so for once I didn't care if I looked silly because I could run! So for now I would say things are good. :)

Friday, March 2, 2012

I'm Lucky?

In my last post I mentioned that I tore the meniscus in my left knee in the midst of my passing out from blood clot/going into cardiac arrest/open heart surgery debacle. It's the craziest thing. Even though the blood clot was with out a doubt the most terrifying experience I've ever had...the scary thing is telling the story to people in the medical field and seeing how scared they get. Everyone is shocked I'm still here because those clots were massive. Me too sometimes actually. I know that a lot of people don't make it, so it's quite incredible that I did.

But back to my knee...so it's been hurting ever since I came home from the hospital in July, not awful pain, just kinda annoying pain that I usually only noticed when I was at home and got up off the couch and couldn't straighten my left leg all the way. Ross said he found me on the floor when I passed out and I was in a weird position, so we figured I bruised it and it would go away. But for months it continued. However I had a few more pressing things on my mind...ahem lymphoma...so I kept forgetting to mention it to my doctor. Finally I did and they thought maybe it was pre arthritis...great! I'm officially old at 29 years old. Since it kept hurting, my hypochondria took over...I started googling knee pain and became convinced I had bone cancer and may lose my leg. You may have called me dramatic 2 years ago, but these days in my mind anything is possible. One of my doctor's suggested an MRI, but then my main doctor switched hospitals and there was a shuffle in all the paperwork/scheduling and it never happened. Finally last month I got the MRI. Mind you, I've been walking, climbing stairs and working out with this knee for months so it wasn't awful but I knew something wasn't right. And ta da...a torn meniscus. It's the inner part of the knee and I had a small tear and a sprain in the back. It all makes sense because people usually tear their meniscus in sports when they pivot suddenly. I literally fell on my bedroom floor without bracing myself so it was a similar action.

But then the word surgery was mentioned and I freaked. Please, no more surgery!! Thankfully my doctor said he didn't think I would need surgery, just physical therapy. I still wasn't excited about the possibility of more doctor visits on top of my very full schedule, so I admit it, I went home, googled "torn meniscus" (I can't help myself with the internet!), put ice on my knee and cried. I'm just so tired of stuff being wrong with me! Ross tried to comfort me and said that since I could walk and run, I would be fine and didn't need to worry, but I didn't want to listen.

Regardless I went to an orthopedic doctor who proudly told me that he works with the Yankees and Giants...ok don't really care...do I need surgery?? He recommended physical therapy as well because I'm on blood thinners, surgery would not be a good idea for me right now, it would only be an option if the PT didn't work. Thank God. So I started physical therapy this week and I'm so happy because my office gym offers PT services so I go there and not to a doctor's office...small blessings! My physical therapist is great and encouraged me to continue my spin classes since that helps with the rehab. And my knee is already starting to feel better.

So in my spin class last night I told my instructor that I tore my meniscus, so I would have to keep it easy in class. He asked how I did it and I said I fell without bracing myself. He joked, "were you drinking?", and I was like, "yeah I was drinking and not paying attention, ya know how it goes", because I really didn't want to go into the whole story...I hate to be a Debbie Downer! (My physical therapist does know the truth!) So now all my gym instructors think I'm a drunken girl who falls at bars...oh well. He told me how he tore his ACL, had surgery and it took 2 years to recover! Then he looked at my knee and had me do a few moves with my leg to check my movement and told me that I am one of the few lucky people who have a tear and are able to still use their leg fully and may never need surgery. "You're so lucky!" he said. "Really?" I said, "I need some luck now!". Its so funny to hear someone say that...for once I am the lucky one! Of course he has no idea what else I am dealing with now, but it's nice to hear. All through class as we spun (is that the right word?) he told other people, "she tore her meniscus and look she can still spin!". So funny.

So I guess I'm lucky! Lord knows I needed it. I have enough on my plate and there is no room for meniscus repair surgery. Plus it's nice in a weird way to have a "normal" medical problem that happens to a lot of people. Wanna talk knee problems all day? I can do it! Cancer and blood clots...not so much! Here's to being lucky! May it continue...

Sunday, February 19, 2012

Pissed Off

This post was going to be about other annoying side effects of my blood clot incident (I found out that I tore my meniscus when I passed out from the clot...another thing to deal with!), but it changed when I found out that Whitney Houston died. I was shocked and saddened and glued to the TV after I learned the news. I love Whitney's music and it was a soundtrack to my childhood. In recent years we all knew that she had issues with drugs and alcohol and it was tragic to see her change before our eyes. Although the official cause of death is not yet known, as I watched more coverage of her life and death, I began to get upset at the fact that she had ruined her life with illegal drugs while I am fighting for mine. And frankly I'm pissed about it.

I know that fame is not easy for some people and as we've seen with Michael Jackson and Amy Winehouse, many people turn to drugs and alcohol to get through it. But they are willingly killing their organs, leaving the world far too soon and wasting such great talent. Meanwhile someone like me just wants to live. Some would argue that drug/alcohol addiction is an illness and people can relapse as they do in cancer treatment (by the way, can we find a new term for falling of the wagon? the word relapse when not related to cancer really pisses me off). But the difference is the control. You have the control when you decide to pick up a crack pipe or down a bottle of vodka. Cancer takes away all control. You can't control if the disease begins or comes back. If you have no symptoms, often you don't even know the evil that is in your body until you have a scan. I would give anything to have control. So once again, I'm pissed off. Because addicts are knowingly consuming products that are killing them. And they like the way they feel doing it because they can escape the trials and tribulations of every day life.

I mean, we've all been there. We've all had moments where life was too hard and we wanted to escape. Maybe we've even wondered what it would be like to not be alive anymore. But trust me, once you've been told that you have an illness that could take life away from you, you want nothing more than to live. It's just not fair. Recently a friend of mine that was in remission for 3 years from Non Hodgkin's Lymphoma learned that her cancer was back. I am in touch with several young women, all in their twenties, that have been fighting this nasty disease for years. Years. Their youth has been tarnished, all they want to do is live, and they do anything in their power to do so. Yet a crackhead or alcoholic just throws life away. Maybe I'm simplifying it because I've never been an addict so I don't know what it's like, I just see it from the outside and it upsets me greatly. I just read the blog of a 29 year old woman who incidentally went to the same doctor as me. She was a nurse, married with one child. She fought for 6 years and died on February 6th after her liver failed. Her blog scared me, it made me cry, and it fired me up even more about this issue.

I think of Whitney and while I'm still in disbelief over her death, I'm also mad at her! Her family, her mother, her 18 year old daughter are now left to wonder why. It's frustrating for me to know that her death was avoidable, so I can only imagine how it feels for her family. It didn't have to happen like that. I know this is an angry post, but it's how I feel. As a fan, I'm extremely sad. But as a cancer patient, I'm just pissed off.

Monday, January 30, 2012

Guest Post: The Benefits of Physical Activity During Cancer Treatment

I admit it, I hate exercise. I don't find it fun or stress releasing and the best part of exercise for me is when it's over. Yet long before my cancer diagnosis, I knew that exercise and a healthy diet are important to everyone's lifestyle, so I pushed myself to workout even when I didn't want to. Ironically about a year before I was diagnosed, I was probably the healthiest I had ever been, I was working out 4-5 times a week and eating more fruits and veggies than I ever had before. It was kind of cruel that just when I thought I was so healthy, I found out I had cancer. Yet, I was determined to not let cancer take my life away from me, and that included keeping up my exercise routine of kickboxing and spin classes. The Monday after my first chemo treatment I was back in spin class, sure that I could continue my workouts throughout my entire treatment. It worked for a while but slowly I got weaker and weaker and was forced to scale back. I even tried a swimming class last March as a way to have a low impact workout, but it was hard to keep up and I felt like my body was failing me. Before I knew it, I hadn't worked out in almost a year. So a few weeks ago after my recent setback, I realized that despite everything I've been through, I AM still stronger then I was last year. I want to have some form of control with my health and exercise helps me feel like I am making a difference. Yeah I still hate it and I'm shocked by how out of shape I am, but it feels good to push my body (not too hard!) and to feel like I am getting stronger, even though I'm still undergoing treatment.

Recently David Haas, a cancer patient advocate for the Mesthelioma Cancer Alliance reached out to me about how beneficial physical activity is to people going through treatments, in remission, and even family members of cancer patients, and he wanted to share with everyone who reads my blog. It was perfect timing considering that I am re-dedicating myself to fitness and I agree that physical activity is so important. He wrote a great article on the benefits of physical activity as a complimentary cancer treatment that I have posted below. Please read and share with loved ones in your life.

The Benefits of Physical Activity as a Complimentary Cancer Treatment
By David Haas

According to the National Cancer Institute, researchers are currently focusing their efforts on understanding the relationship between cancer and physical activity. So far, studies have indicated that regular physical activity reduces a person’s risk of developing certain cancers, specifically cancer of the breasts, colon, prostate, uterus and lungs. Scientists are also interested in whether exercise can inhibit the spread of cancerous cells, prevent cancer from reoccurring and improve survival rates. While researchers are not yet certain whether exercise is capable of inhibiting the development of cancer, it is clear that physical activity provides some very important benefits.


Using Physical Activity to Reduce Stress and Promote Well-Being:

Going through cancer treatment is both physically and mentally exhausting. Many common treatments leave patients weak, fatigued and physically ill. During treatment, the last thing that most patients want to do is exercise. However, light to moderate exercise can have significant benefits.

Patients who exercise during treatment frequently enjoy higher energy levels, enhanced mood and increased feelings of well-being. Being diagnosed with cancer can also take away a patient’s sense of control. Regardless of where an individual is in the recovery process, strengthening one’s physical condition can help patients regain control over their body. While cancer patients might not be able to fight their disease directly, they can put up a fight by increasing their overall heath.


Strengthening the Body Through Physical Fitness

Regardless of whether an individual is currently going through mesothelioma treatment or has been in remission for years, physical activity can be extremely beneficial. While battling cancer, many patients lose muscle mass, strength and physical endurance. Regular exercise can help a patient regain lost muscle mass and strengthen his or her body. Physical activity has also been proven to strengthen the heart, lower cholesterol and improve overall health. Many times, feeling stronger physically goes a long way in improving one’s mental outlook.

People experiencing negative side effects due to their treatment can also benefit from regular physical activity. Exercise can help patients increase their appetite, reduce water retention and manage pain. Light activity, like yoga or walking, can also help patients deal with nausea and constipation. Curbing these unpleasant side effects can make the treatment process significantly more enjoyable and enhance the patient’s quality of life.

Thanks David!

Thursday, January 26, 2012

In a better place

The new life that I've had since I have been diagnosed has definitely taught me that each day is different. As bad as one day can be, the next can be great. We all have our struggles and unfortunately this is mine. But for once, after a bad scan I haven't totally fallen down the rabbit hole. I'm not sure if it's because I'm just used to the process of picking myself up, dusting off and trying to live positively again, or if I've really grown as a person. It's hard, but it just happens.

This week I met with my doctor again to discuss everything and I didn't cry! Which is a major accomplishment. I even made a joke...asking him to "turn off" the cancer in me since they are able to "turn on" cancer genes in rats, I figured they could do the same in me and I'll be done with this mess. Should be an easy task, right? I wish.

He had me list all the chemo regeimins I have been on since July of 2009 and it's a mouthful: AVBD, ICE, BEAM, Gemzar, C-OPP, Rituxan, Bendamustine, Vincristine, and the newest, Adcetris. I mean, ridiculous, right? I remember each one, when I took them, the side effects, everything. And most of the chemos were back to back with little rest in between. AVBD was the first chemo I had and while I felt nauseous sometimes, I continued to bop along and live my life. It wasn't until I was on ICE that I realized, yes I do have cancer and this is what chemo feels like. It was the absolute worst and to this day if I hear or see the word Estoposide (the E in ICE), I feel sick to my stomach...ugh, I didn't even like typing it!

So, my doctor said that the mission right now is to control the disease. The cells have figured out a way to become resistant to all the drugs we've thrown at it and in the process the drugs have beat up my body. So we have to find a happy medium between controlling the disease and not making me sicker. Adcetris, the newest drug, had the least side effects and I felt ok on it most days. It's funny how the body forgets, a year ago I was short of breath and could barely walk to the subway station without crying because I was so weak. Now I practically run to the subway because I'm always running late and I take it for granted. Since I'm feeling pretty good these days and the devious cancer cells have become resistant to the drugs, my doctor decided to give me a break from chemo for a while. I will continue to take the oral medication at home (yay! no IV) and in 3 months we will reassess. The oral meds work slow so we're not sure what result I may have...although I have been feeling dull chest pains, very similar to what I felt on Adcetris, so something is either shrinking or growing in there. If I'm doing well on the oral medication--it's called Revlimid (I'm going to have a biology degree when this is all done and I HATE science...or I guess now I love it since it's saving my life? Weird.) Anyway, if it's working, we'll keep me on it. The theory is that the further I get away from chemo, the better I will feel, so 6 months or 9 months from now, we can blast it with chemo again and that may do the trick. That's the plan for now, but ya know, things always change. And the silver lining is that I still have less disease now (it's kind of scattered in small spots throughout my chest) than I did in the beginning.

The thing I love about my doctor is that he's very collaborative and willing to work with other experts in the field to get their opinions. So when the time comes to reassess, he may send me to Texas or Seattle for other opinions. This is all so crazy, you would never know I was sick if you saw me on the street, yet there are demon cancer cells inside of me everyday and I think I still have problems believing it sometimes. But such is my life!

Thursday, January 12, 2012

Not the post I hoped to write...

The post I hoped to write was that I kicked cancer's ass finally, that I can finally say I am in complete remission, with no evidence of disease. Yet, those of you who have been reading my blog from the beginning have seen me on this emotional roller coaster, experienced my highs and lows and know that everything is not that simple.

Today was one of those lows. After a great scan in October that showed I was in partial remission, the scan I took yesterday showed that there was a small increase in the lymph node cells. Part of me is shocked, but the other part is not because I've been down this road before. Something works, and then it doesn't. It's like I keep putting in the same movie, hoping for a different ending this time. Or one of those Choose Your Own Adventure books where I keep picking the wrong ending. I'm exhausted, defeated and really, really sad. This drug was supposed to be my silver bullet, the one that changed my life and ended this nightmare. But to the surprise of my team of doctors and nurses, it wasn't. Research showed that if a patient initially responded to the drug well, they should continue to respond and I did have really high hopes. Again, I've learned I'm part of the small percentage that it doesn't continue to work for. I hate writing these posts after trying to be positive, but it's the truth in my story.

So what are the next steps you ask? Well, one thing I love about my doctor is that he always has a plan. He doesn't like to stick with any regimen that shows it may not be working anymore...he's always on to the next one. So the new plan is for me to take an oral pill that is technically not chemo, but as been known to shrink lymphoma. The good thing? No trips to the doc for IV drips, I get to take it at home and it doesn't have too many side effects. That's as much as I know now, my brain was a little fuzzy to all the details. Thank goodness Ross was there as my 2nd set of ears and to comfort me...actually 2 doctors and 1 nurse comforted me as well...it was all very surreal, I felt like it was happening to someone else.

But in the next moment I realized it was happening to me. I looked in the mirror at my red, puffy eyes and noticed I desperately needed to get my eyebrows done. So after several long tearful conversations with some of the staff and a few blood tests for the new medication, I went to get my eyebrows threaded and threw in a manicure just because I was feeling sorry for myself. As I walked to the nail salon, I was simultaneously crying and laughing at the absurdity of the situation. But that seems to be my life these days...cancer treatment and eyebrows (believe me they were out of control). I'm not saying that this is easy, I just had an all out marathon crying session with Ross and I'm incredibly upset about this situation, but some moments help me remember I haven't completely lost myself in this disease. And as my hubby and I settle in to watch "The Office" (the only show we watch together) and I hear myself laugh at loud on such an awful day, I realize that I will get through this somehow, someway.