Friday, August 19, 2016

Brooklyn is Bold & Beautiful in August

Last week I mentioned I would be doing a photo shoot, but didn't want to mention too many details because well... I didn't really have them all. All I knew was that I  had agreed to be a model for the latest Bold Beauty Project gallery showing many months ago (before cancer), they had found a photographer in NYC and I was going to meet her to take a few photos on the roof of her apartment. The magic that occurred during this experience was nothing I could have planned for.

Bold Beauty Project Feature Photo, Feb 2016.
Let me take a few steps back and explain how this all came to be. Back in January, Ty surprised me with a trip to Art Palm Beach. I had never been before so I thought we were going to walk around a small art festival and see local artist. Boy was I wrong! We walked into a huge convention center, got our tickets and as we entered we were given a pamphlet. On the front was this gorgeous photo of a woman throwing rose pedals in the air with a caption referencing a gallery showing of photos featuring women with all different abilities called the Bold Beauty Project. I asked Ty if he knew about this and he explained to me that he had known for a while and was the biggest reason for taking me to the show (knowing what I know about him now this doesn't surprise me)

I have always enjoyed art, but I can't say I appreciated it as much as he had simply because he is an artist, but for the first time I found myself genuinely excited and connected to the photos being displayed in front of me. We walked around the show and picture after picture I kept thinking to myself Yes! There needs to be more of this available to society! Each one demonstrated the model as a person rather than "a person with...” even more importantly told stories of strength, love, sassiness and sexiness. I remember looking at Ty saying I wish I would have known about this earlier so I could have been part of it. His response?, "Well it may not be too late, Ya never know until you ask" so, I did. At the time I had no idea my life would take me to NYC so, I inquired about how to get involved. I was told that were actually planning on doing another show in Miami in November and looking for new models. After eagerly signing an interest sheet we went on our way to enjoy the rest that the event had to offer. Truthfully, I didn't think I would hear back from anyone, but it was worth a shot. 

To my surprise about a week later I received an email asking me if I was still interested in being part of their next gallery. With that one reply a whole new opportunity became possible. After being diagnosed I contacted the coordinators to tell them that I was going to be relocating for a while, but they should know that I was definitely still interested. A few days later, ALisa Rauner contacted me. She is an extremely talented NYC photographer and was expressing her interest in working with me for the project. I agreed, we talked about a concept and set a date.

Preview: ALisa Rauner Photography
Makeup by: Celina Dutertre
That brings me to the day of our shoot. I've heard people say that life begins at the end of your comfort zone and if that's true I must have some big new beginnings in store because our shoot definitely pushed me outside of mine. When we arrived at the location ALisa was waiting and ready to rock, wasting no time she brought me up to her apartment where I was greeted by another photographer and a makeup artist. ALisa and I had come up with this concept of creating an image that would portray a woman of great beauty and strength. She asked me to bring a few things with me so, I arrived with a white dress, my wig and a bunch of babies breath flowers; unsure where she wanted to go with all of this. Bold make up, statement jewelry and flowers in my hair is definitely not something I am accustomed to so, I must admit at first I felt like I was dressing up for Halloween, but I soon learned it was best to just trust in the process. 

ALisa and her team spent about four hours of their time making sure we got the right shot and making sure I felt as beautiful as I had hoped I would. For the last 76 days Hodgkin's Lymphoma has been at forefront of my thought process, so it felt amazing to kind of forget about cancer for a few hours and just enjoy feeling beautiful. I may have been way outside my comfort zone, but at the end of it all I was exactly where I wanted to be. 

I am so glad I never let this opportunity slip away from me and even more grateful that everyone involved has been so kind and accommodating after only one face-to-face meeting and few e-mail exchanges. I hope you all enjoy this preview as much as I do. I cannot wait to see the final images that are chosen for the show! 

People often ask me if I had the chance to live life without Cerebral Palsy would I take it and without hesitation I say no. Is life a bit more challenging at times? sure it is, but at the end of the day I truly believe my life would be a lot less exciting. From the people I meet to the places I get to go I wouldn't change it for the world.


 To learn more about ALisaRaunerPhotography and the Bold Beauty Project click here!

Life truly begins at the end of your comfort zone.

Wednesday, August 17, 2016

We are all wired differently

Friday was a big day in this process, marking the 6 treatment which means we are half way done! I haven't written anything in a few days because I have been in a bit of a funk due to the aftermath of the treatment, but it feels good to be climbing out of that hole today. The cumulative nature of this treatment is nothing to joke about. The first few treatments I  would rebound as if nothing had ever happened, but as the treatment numbers decrease the aftermath is getting harder and harder to hide from.

Luckily for me, I have a family that is so supportive and a boyfriend who is pretty much a saint. I have been struggling a lot with the fact that I am having to surrender my body to this fight. No, in no way am I giving up, but I am learning more and more everyday that my body is going to change and for now I can't and more importantly do not need to fight that from happening.

When fitness and health consumed about 90% of your life, and you are looked at an inspirational public figure to some degree it's hard to accept a new reality for the time being. I know I haven't lost all desire to stay fit, but reality is right now most days it's hard to find. In some ways, I feel like I'm letting people down, but I know that fighting my way back to where I was before is going to be an exciting journey that I look forward to taking people on.

Some may not know that I have a twin brother, Jon. Jon and I were born about three months premature with the odds stacked against us. Doctors were leaning towards preparing our parents for tiny funerals instead of big celebrations, but we had other plans. Jon and I have a few similar interests, but we couldn't be more opposite. I wear my emotions on my sleeve (anyone could see them from a mile a way) and he is as guarded with his emotions as possible so, when I was diagnosed I wasn't sure how to really take his silence, I knew he cared, but did it really not bother him?

Jon is here in NYC with me and after spending the day together yesterday we talked for a while We joke about a lot of different things, but one sentence kind of stopped me in my tracks. 

Do you ever miss me?
"Not really."
Do you ever miss anyone?
"No, not really. I'm just not wired that way."

My initial reaction was to feel offended, but after really listening to him repeat that he's just not wired that way, I understood it. We may share the same birthday, DNA and love of music, but that doesn't mean the way we care for one another is right or wrong. Everyone likes to say that Jon is just Jon, but at the end of the day he would do everything in his power to make you laugh when you needed it most. We may not be wired the same way, but I'm so glad we came into this world together. This visit was exactly what I needed.

"If you can find a path without any obstacles it probably doesn't lead anywhere."- Frank A. Clark

Friday, August 12, 2016

You always want what you can't have

Portrait taken a week before chemo
As the saying goes, you always want what you can't have and right now I can't have long hair. I never fully realized how attached I was to my hair until the day I had to cut it. We had been a few weeks into chemo and the feeling I got every time I would look down at the shower drain was gut wrenching. Everyone prepared me that this would happen, but just like everything else with this process you can't fully grasp it until it actually happens to you.

On July 8th, (Day 34) I walked into the Salon to get my hair cut. I was definitely emotional, but I had to remind myself that this was only temporary. No one had forced me to sit in that chair that day, I just knew it was something that was inevitable. I remember the lady asking me if I was ready and with confidence I said yes, but deep down I truly had no idea! It took about a half hour and when all was said and done I honestly found it hard to look in the mirror. At that moment I felt like I had lost part of my identity and if I'm being honest I haven't felt the same since. I guess that makes sense though, right? Nothing about this process is normal and it has changed me in ways I never thought I would ever experience.

I am extremely grateful that I was able to get a couple wigs that really do help me cope with the situation. I have been trying my best to accept my short style for what it is so, I don't wear a wig very often, but yesterday I treated myself to something special. I have a photoshoot coming up next week that I will talk about in depth at another time, but I wanted to get one of wigs styled for the shoot and I'm so glad I did!

I looked in the mirror and for the first time in a while I recognized my reflection. I know that a hair style is not what defines a person's beauty, but when I looked in the mirror I sincerely felt beautiful. Everyone in the salon could see the difference in my expression and the way I felt about myself. I am learning to accept change. I had no choice, but to accept having a port put in and a chemo schedule to work around; those changes I accepted immediately, but this one is taking a bit longer (pun intended).

People have been telling me how amazing I look and that I should consider keeping it short when this is all over. To those people I say, Thank you for your opinion, but that is not something I want to do. I still get emotional as I write this, but as always I must remind myself that the hair loss is tangible proof that the medicine is doing it's job.

Today is a pretty awesome day (Day 69) and we are on treatment 6 of 12, half way done! Long hair, short hair, at the end of the day this process is saving my life and I couldn't be more grateful!

"No one can make you feel inferior without your consent."- Eleanor Roosevelt

Wednesday, August 10, 2016

Learning New Skills: CrockPot Cooking and Playing with Paint

If someone would have offered me a 6 month block of time where I wasn't really allowed to work, three months ago I probably would have thought that sounded like a dream come true, but I can honestly say that being forced to relax is a lot harder than one would think.

Piece I made with my Aunt Karen for Ty :)
I never realized how busy I would keep myself, it used to seem like I never had enough hours in the day. As my body is healing and finishing this fight  I am using outlets such as blogging, painting and cooking to fill my days (2 of which I'm not very good at), but these activities have taught me a lot about myself.

I have learned that I actually enjoy cooking. I'm pretty late to the game, but I'm definitely getting the hang of using the CrockPot! It seems like there are so many cool things you could try while using it so, if you have any healthy, NUT FREE recipes I should try I'd love to hear them!

The other thing I've learned to love is creating art. My boyfriend Tyler is a very talented artist and I've always envied his talent. With a good amount of encouragement he's gotten me to try my hand at painting. I am no where near as good as him, but I have found that it is really relaxing! The thing I struggle most with is being so hard on myself and my desire to create perfection. If my strokes don't look as clean as I would like them to or my lines don't look the way I think they should I get really frustrated. I have now painted a few things and working on allowing myself to just enjoy the process. I am the type of person that loves to have control, I don't really like change and I when I put effort into something that will have my name attached to it I'm going to work my hardest to create perfection.

I'm probably not going to be the next Rachel Ray or Jackson Pollock, but the amount of time we are New York is not going to change so, as much as I want to be working full time in a gym right now I know this forced break is necessary. Going through treatment was definitely not on my bucket list, but this process continues to surprise me. In the grand scheme of things a break like this will be few and far between.  So, as much as I hate to admit it there are many aspects of this journey I do not have control over. This process has forced me to accept change in a bigger way than I ever thought I would be capable of doing and I am learning everyday that chasing perfection is a waste of time.

"Art is not what you see, but what you make others see."- Edgar Degas

Tuesday, August 9, 2016

The fountain of youth is filled with Honey

I have always been a morning person. Before I got diagnosed, if my body let me sleep past 8 a.m. on the weekends I counted that as a huge victory. Now-a-days when I am able to to feel energized by 8 a.m. that is when I know I'm going to have a great day. Yesterday I told you I take advantage of my good days the best I can and today I did just that!

Throughout this new journey I have continued to count my blessings. I am being treated by the best doctors and have every resource available making sure this process goes as smoothly as possible. I know that this cannot be said for everyone going through a process like this so, it is certainly not something I take for granted. One of the best and most enjoyable places to go is my Grandparents house. When I first got diagnosed my doctor said that I had to be extremely careful/aware of activities I did and the people I came in contact with due to my immune system being compromised so, going to a public facility to swim was totally out of the question. If you know anything about me you know that the pool is my happy place. It is the place where I feel most free and relaxed. Luckily for me, my Grandparents live about an hour away from NYC and in their house is a beautiful pool.

This morning I woke up feeling energized and excited to get in the water. When immersed in the pool I am able to walk upright, hop up and down, swim laps and even kick my legs without restriction. I was in for about an hour and a half and it felt like 5 minutes. Today was one of those days where if I didn't know I was going through treatment, it would seem as if nothing had changed.

Me & Cousin Honey 
Today's visit was exciting because I got to spend time with my family while doing something I loved. When we were done in the water we dried off, got dressed and all sat down for lunch. This lunch was made even more special because I got to witness something truly amazing. Sitting across from me was one of my oldest cousins. This beautiful woman's name is Honey and she just turned 95 years old!!! At 95 Honey still walks fast, climbs flights of steps, stands up straight, loves to bake and is extremely smart. When I asked her what her secret to such a long life was she said, "Good genes I guess."

I can't even imagine all that she has seen and learned in the last 95 years! Before I said goodbye I asked her if I could take a picture with her. She asked my why I would want to do that and I told her because to me she is simply amazing!

It's on days like this I am so glad I got up, got dressed and had the energy to do something I enjoy. I can't wait to close this chapter and experience life to the fullest with the person I love. I can only hope I inherited some of those good genes. After today, I'm convinced the fountain of youth is filled with Honey.

Next time when you think of beautiful things don't forget to count yourself in.- Unknown


Monday, August 8, 2016

Cancer Isn't sexy, but it doesn't always come with a death sentence.

Hey Everyone! 

It has been quite some time since I've posted anything here so, I thought I would wipe the slate clean. A lot has changed and I've had a lot of time on my hands these past few months so, I thought I'd take a crack at blogging again. Some days I may have a lot to say and others not so much. Either way, I hope you enjoy and thanks for reading/listening :)

*Disclaimer: I am writing from personal experience. Everyone's fight is different; this is mine.
Cancer is not a subject to make light of and by no means am I trying to do so. Every person affected by this is different and so is our fight. I hope that by sharing my experience I can be an example of proof that the word Cancer does not always equate to a death sentence. 


For those who haven't heard, I will now forever hold the title of Cancer Fighter/Survivor. This isn't a club I ever thought I would be in, but if I have to be I'm going to make the best of it. I have now been in this battle for 65 days. I have gone through 5 full chemo therapy treatments and can proudly say after 8 weeks of treatment and a clear PET scan; I am in remission! It's crazy to think that only 3 months ago I never once had to think about bi-weekly doctor visits, scans, ports or a treatment schedule.

Before all of this, my biggest worry was making sure the gym was open, clean and my skills and knowledge as a coach were sharpened for each CrossFit class I would teach throughout the day. On May 23, 2016, the universe had other plans for me and everything seemed to change in an instant. I went from living a very active, independent life in South Florida to finding out I was walking around with Stage III-B Hodgkin's Lymphoma, and before you could finish saying New York City I was on a plane headed straight there to be treated by some of the best doctor's in the world.

Like anyone could imagine, the day a doctor says "you have cancer" is a very emotional day and being a very emotional person probably didn't help the situation, but this was my new reality. I had learned to live with Cerebral Palsy 26 years ago and now I was going to have to learn how to fight cancer. If I'm being honest, I'm too young to die was my first exact thought as soon as I heard the doctor say the words Hodgkin's Lymphoma. I soon learned there were so many other thoughts I could have had.

During my first meeting with my doctor I had a lot of questions as any new patient would. She told me that this experience wasn't going to be like it's portrayed in the movies, and I have to say she was right! Fighting cancer isn't a fight I would wish on my worst enemy, but not every day is bad. Surprisingly, I have had more good days, (even some great ones) than I have bad.

When this is all said and done I will have gone through 6 cycles (12 treatments) of chemo therapy and 6 hormonal injections putting my body through temporary menopause in an effort to preserve my eggs. Throughout this process I have learned more about medicine than I ever thought I would, and I have to say the fact that medical professionals have figured out new ways to preserve a woman's eggs without wasting precious time fascinated me! I receive treatment every other Friday which was comprised of 4 serious drugs, and now 3 while my body is in remission finishing this fight. This "Cocktail" as the doctor calls it is tailored to my body and its needs. In the beginning, the turn around from when I would feel the effects of the treatment to when I would feel like my normal self was very short. As the treatment numbers decrease the after shock increases due to its cumulative nature so, I accept my bad days for what they are and take advantage of my good days as best I can.

I attribute much of my body's positive physical response to the fact that I was so fit before ever going through treatment. When I first heard that I was going to go through chemo I wondered how sick it would make me feel and when I would lose my hair because these are the two biggest elements that seem to always be associated with the word cancer. Do people go through some severe cases? Without a shadow of a doubt, but in my case, during these first 65 days I think I've gotten sick only twice (I'm pretty sure that was do to some serious New York traffic which resulted in car sickness) and as for the hair loss it's a lot less aggressive now that I cut it short. While it still falls out, and the patches of bald scalp are super sexy... (not!), I know that it is only temporary and tangible proof that the medicine is doing what it has been asked to do.

The other key factor to such a positive response... support. I can't even imagine what this would be like if I didn't have my support system. From my family and boyfriend to friends and complete strangers the support I have received throughout this process has been unlike anything I could have imagined. A cancer diagnosis doesn't just affect the patient, it affects everyone around the patient as well. People have rearranged their daily schedules, family vacations and weekend plans just to be here if I need them and I don't know if I'll ever be able to say thank you enough.

People can tell you what to expect all day long, but until you experience it first hand I don't think anyone can understand what your fight is going to be like. This process puts your body through the ringer and tests your limits mentally. There are many days when I question why this had to happen to me and I've cried more tears than I care to admit, but if I've learned anything through this process it's that the human body is extremely resilient and I know when this is all said and done 88 days from now I will be an even better version of myself.

"You are braver than you believe, stronger than you seem and smarter than you think."- A.A. Milne