The Identity of Hair: My Experience with Hair Loss and Regrowth after Chemotherapy

My hair was a large part of my identity before I was diagnosed with non-Hodgkin’s lymphoma in February 2015. I have, for many years of my life, always been a woman that cared quite a bit (highest diva status) about my hair. I curled it, colored it, primped it, fluffed it, whatever. I loved my hair. It was a crucial part to my physical identity. It’s so crucial that here I am talking about it, again, even though I’ve already written on this during treatment.

I know I’m not alone in this. Many other women feel the same way. It sucks, it’s horrible, it’s one of the worst things about treatment. No one wants to lose their hair.

But there’s so many women who pull themselves up, (Shannon Doherty’s battle with breast cancer is a great example of this bravery) and wear the bald with pride and poise. It’s so raw, honest, and amazing.

This is something that I have always admired so much. It is real. It is courageous. It is beautiful.

It’s also something that I was never comfortable doing myself.

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Sporting my wig during one of my chemotherapy infusions.

Even on the days I felt like hell in a hand basket traveling down a stream of chemical misery, I would put that wig on. Every time I left the house, I would wear that wig. Most of the time I wore my wigs to my chemo sessions at the clinic and maybe I’d take them off during infusions but they’d always go back on for selfies (important for that blogging process!) or when I would have visitors. Despite how uncomfortable and miserable those wigs were, I would wear them almost daily. It was the one aspect of treatment I could control to at least look as normal as I wanted to feel. Eyebrows and eyelashes (of course, there’s plenty of options for those too!) are more challenging to replicate but a wig was just so accessible.

I felt so hideously ugly and alien without a wig.

I was just not comfortable being seen as the sick cancer girl. Maybe part of it was wrapped up in the loss of my vanity that I had for my hair. Or perhaps part of it was how I viewed my cancer as a weakness that some might exploit. Now looking back on it, I think it was a combination of both. I’ll never forget, like so many of us, the absolute utter devastation I felt when those first few strands of hair fell out. It was almost as bad as the day I was diagnosed with cancer. I cried that day. I didn’t cry the day I was diagnosed. Something about losing my hair, losing the core of my physical identity, shattered my reality.

When I hit remission, thankfully, I began obsessing over when my hair would grow back. And when my hair was a stubby GI Jane cut, is about when I began meeting other cancer survivors. It humbled me to see others with worse cancers than mine and reminded me of how lucky I am. In the bigger picture, it’s just hair.

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Taken after my last chemotherapy treatment June 2015.

But in many situations, there has been so much isolation in some of the physical insecurities that come along with the impact of chemotherapy. I should just be grateful that I’m alive, I shouldn’t still lament how much I hate my short hair. I shouldn’t be miserable over all the weight I’ve gained. I should learn to live with my scars.

Telling survivors that they should just be thankful for the bigger picture, completely negates the stark reality of the low self-esteem issues that can strike the most confident of us after a battle of cancer. I know I am not alone in this. My self-esteem after cancer, although it improves with each inch of hair regrowth, was horrible after watching my body drastically change in such a short time. Yet so often we’re told the “just be grateful to be alive!” narrative that we dismiss so much of these issues of self-image and self-esteem that can eat away at us. And yes, I am grateful to be alive. Every single day, I am grateful. Yet insecurities of weight and physical appearance are already a huge issue for young adults (and all age groups) that impact people’s lives in serious and life threatening ways. Cancer survivors are not exempt from these insecurities. And if our treatment has made them worse or created insecurities that never existed before, this needs to be addressed.

Mental health is important too.

And mental health can be so connected (for women AND men) to issues of personal appearance that it is insane to not address how this impacts cancer survivors, especially young adults, that have just experienced sudden and drastic changes to their body that they may be struggling to accept.

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My son and I before I was diagnosed with cancer.

Bald is beautiful, of course it is. But for some of us, we never felt beautiful as bald. And that voice needs to be in the conversation too. That it is okay to not feel beautiful while bald. When my hair was growing back, I used to just sit (I’m still guilty of this) and stare at pictures of my hair before I lost it. It’s going to take a long time until it’s that long again. This is a real mourning process, one that I am just now finally learning to accept over a year later as my hair has reached a length I am finally comfortable with. Yet I always felt stupid for lamenting my hair so constantly. After all, I was alive. What is hair in the bigger picture of survival?

Hair is such a core identity marker and for survivors like me, losing that piece of yourself can be devastating. It’s something that for so many of us becomes an uphill battle of self-acceptance. And it’s okay to feel that way.

 

Lindsay (Dozer) Brookshier grew up in Colorado and spent half of her adult life in Manitowoc, Wisconsin. She and her six year old son currently reside in Fort Collins as she bulldozes her way through a MA degree in English literature while teaching college composition. She went on her first trip with First Descents summer 2016 to Hood River and learned how to white water kayak with initial terror followed by immense enthusiasm. Since then she has become hooked to the spiritual experience of pushing her limits, embracing nature, and Out Living It. One of her greatest passions is writing blogs that advocate for young adult cancer awareness with her favorite subjects centering on struggles of parenthood, patient advocacy, and self image. You can follow her most recent blog posts here: https://medium.com/@lindsay.brookshier

A Cancer Diagnosis, Treatment and a Living Will?

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All cancer is hard and brings along with it things that most young adults never even think about. My cancer experience started in October 2012 when I was first diagnosed. At the time I underwent my first cancer related surgery I was under the knife for 14 hours. I remember the hospital asking me at my intake if I had a living will. I had never even considered needing one, it was at that moment that I realized it was something I needed to do. Fast forward to my first recurrence in April 2014, I was hospitalized immediately and during my intake you can guess what they asked me. When they brought up the living will again I sheepishly told them no, I didn’t have one. Onward through treatment I never took the time to create one. When round three of cancer hit me in 2015 I was asked again, at this point I was well versed in making jokes about not having my living will taken care of. As many of you can understand, I didn’t want to think about dying. I didn’t want to think about the possibility that any of these cancer surgeries could have a freak accident and result in my never waking up. I didn’t want to think about it. I am young, invincible, and I shouldn’t have to think about what happens if I die (even if I have cancer).

Attending First Descents gave me many gifts, one of them was an outlook on the rest of my life. I realized one night while in West Virginia that having a living will didn’t mean I was going to die. It meant I could live more freely. It meant I didn’t have to worry about what would happen when I was gone. It was a weight lifted off of me, as an added bonus I didn’t have to be embarrassed anymore when the hospital or doctor asked if I had it taken care of.

Upon return from my FD1 experience one of the first things I did was talk to my husband about the fact that we needed to get this taken care of. He scheduled a meeting for me with an estate planner, I quickly named her my death lawyer. When I went to meet her we talked about all of the things that I felt like a young adult shouldn’t have to talk about. There were a lot of words thrown around like beneficiaries, estate trust, medical power of attorney, financial power of attorney, and even funeral planning. I thought it would be scary and depressing. I even told the lawyer that I had dubbed her the death lawyer. She told me that she liked to think of herself as a life lawyer, because she helps plan things for you so that you can live your life. That is what it is all about right? Being able to live our lives and be out living it!

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So, have you taken the time to meet with an estate planner and organize your living will? I know that I felt like I didn’t have any assets when I walked in to meet with the lawyer. When she asked me if there was anything of any value that I wanted to leave to anyone specific literally the only thing I could think of was my white water kayak and gear. If you have been on white water you will totally understand this! It wasn’t until a week later that I realized I had many other things of value that I should leave to people, but hey the kayak was my first thought!

If you don’t have your living will yet, first, please take the time to find an estate planner to help you. After you find your planner, take a few minutes and consider the following:

1. What type of financial assets do you have? – Consider life insurance policies, bank accounts, retirement accounts, stocks, bonds, and any other type of financial assets. I completely forgot about a life insurance policy I have until months after I created my living will, by thinking about this before going you will have a better chance at thinking of all your assets.

2. Who do you want to be your beneficiary and financial power of attorney? – Think about which two people would you want to manage any financial assets. My first person was easy but I really had to think about who I would want to name as my second person in the chance that my first named person wasn’t available.

3. What physical assets do you have which you want to name to specific people? – Do you have any assets that you want to ensure go to a certain person? The living will is the place to let your wishes known. These physical assets don’t have to be big and expensive, they can be something sentimental that you want to ensure your best friend gets. My estate planner left a place in my binder where my will is located so I can add to this as I think of things I would want people to have.

4. Who do you want to have as your medical power of attorney? – Think about what you would want your end of life care to look like, then think about who you believe would actually follow through with those plans. – I opted for two people here too. My husband is one and a friend is the second. I felt that my family wouldn’t be able to actually follow my end of life wishes so I had a conversation with the friend to ensure that she knew exactly what I would want and where to find the documents if it ever came to it.

5. What do you want your services to look like when you die? – Do you want a funeral service, cremation, open casket, closed casket, celebration of life, big service, small service? What about flowers, music, donations? What do you want it to look like? All of these are pieces to consider when planning what you would like your services to look like. This is an ongoing discussion point for me. I know there are things that I absolutely want to happen and others I know I do not want to happen. I have even met with a funeral director to find out options.

So there you have it, some things to consider so you can be prepared when you go to plan your own living will. I hope that you have an amazing estate planner, death lawyer, or as I now refer to mine life lawyer. I hope that getting your living will together lifts a weight off of your shoulders. A weight you might not even realize is there. I hope that it helps to facilitate you in your goal of out living it!

 

left-eye-9-1Erica, Left Eye, is a 31 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she can be found roboting or heading up the STEM program at the school where she is an educator. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with FD, chatting it up with her FD Family, and spending weekly visits with the Hoosier Kayak Club. Follow Left Eye on her own blog,www.tealelfs.com

FD Tribs Instagram Challenge Summer 2016

This summer, we asked the FD community to participate in the FDtribs Summer Challenge instagram competition. Embodying the theme of Q3, alumni challenged themselves and embraced the Out Living It spirit. These were the winners:

1. Jordan “Navigator” Kessler posted this awesome photo climbing in The Gunks. Coming in first place, he won a sweet Patagonia Black Hole Backpack.

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2. In second place was Sonja “Ninja” Wagner. She biked 4,000 miles from the Atlantic Ocean to the Pacific Ocean in 66 days, making her the winner of a Gerber Freescape Camp Kitchen.

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3. April “Lemon Drop” Capil came in third in the competition. Swimming with dolphins 8 years post cancer won her some sweet Anon M2 ski goggles!

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The Stages of Sex After a Cancer Diagnosis

Cancer and sex: do they go together? Can they go together? I have cervical cancer and it isn’t going away. Does that mean I can never have sex or experience intimacy again? Absolutely not. However, it sometimes feels that way.

untitled-11-of-18My vagina has been trying to kill me for years. That is how I feel, anyway. My cancer started out growing on my cervix, so mentally it is hard to stay outside of my own head during sex. It is hard to not think about this thing inside me which continues to attempt to kill me, and the fact that it all started out right there! It makes it hard to stay in the moment.

When I get asked the question “Can cancer and sex go together?” my answer starts out in a way you might not imagine. We actually caught my cancer because I was having sex. One of the symptoms of cervical cancer is abnormal bleeding with intercourse. My husband, then my boyfriend, asked about the bleeding as it became increasingly worse.

I remember the last time we had sex before my diagnosis. It wasn’t because it was the most amazing night of my life or anything dreamy like that; I remember it because we were away at a conference and staying in a hotel. We had sex and afterward it looked like a graphic murder scene. I can only imagine what the hotel staff must have thought about when they came in to clean the room the next day.

My spouse said, “That’s it, no more sex until you get checked out and see what is going on.” The threat of no sex actually pushed me towards seeing my doctor and directly led to getting my diagnosis of cervical cancer in October 2012. It felt like the world was crashing in around me. I never even considered how it might impact my sex life, I just wanted to get the cancer out!

Has your doctor ever talked to you about sex and cancer? I would guess not. It’s time to take a look at sex and cancer in a few ways. Let’s break it down by stages of the cancer story:

Diagnosis 

Your sex life could change, even before diagnosis. Sometimes sex can trigger symptoms of your cancer, such as bleeding with intercourse. Sometimes cancer causes your hormones to get crazy. You might not feel like having sex or you may go the opposite way and want sex all the time. It is hard to say and it varies person to person. One might also find that your sexual abilities are not impacted at all, while another person might find that those body parts just don’t want to work. Once you have a diagnosis you will have the mental aspect to cope with as well, and this too can have an impact on your sex life. Bottom line: your sex life might begin to change before you even enter treatment.

Treatment 

dsc06009Sex and treatment? This is an entirely different ballgame. The wide variety of treatments available in cancer can have an even wider range of impacts sexually. You could find yourself with extreme nausea and fatigue, with sex being the furthest thing from your mind. You could find yourself in a treatment or have a surgical procedure that will put you on restrictions as to how long you have to wait to have sex.

Personally, I had multiple surgeries and each one seemed to extend the amount of time before sex was even an option. After surgery often comes more treatment, sometimes chemo and/or radiation. I know during radiation I was able to have sex. I remember a particularly entertaining time at my radiation oncologist when my husband thought he should ask the doctor if it was okay to have sex. My doctor replied, “I’m all for sex, no problem there.” My husband joked that he was worried he would come out like a glow worm. As uncomfortable as it might be, take the time and ask your doctor if you are unsure if you are fit for sexual activity based on your treatment plan.

And let’s not forget about menopause. That’s right– menopause can be a side effect of cancer treatment. This is a beast all in its own. Vaginal dryness, hormones gone wild, loss of desire. All of these are pieces that you have to overcome if you want to have a fulfilling sex life again.

Remission 

I have to be honest here, I haven’t made it into the remission stage for any long period of time and I am living my life with cancer, so I am going on 5what I hear from my cancer friends. It. Gets. Better. It might not be today, it might not be next year, but sex after cancer gets better. Things might be different. They might not ever be the same. You might need lubricant. You might not be able to be as spontaneous as you once were. You might not be able to have sex in all the same ways and you know what, you might not even be able to have a sex life that even resembles a “typical sex life.” That is okay. Find your groove.

I asked a friend about sex and cancer and she said she is all for it, but immediately realized that maybe she should be talking to her doctor about it. She had recently been notified that her blood work indicated her counts were low (neutropenia), and she realized she could be putting herself at further risk–risk she didn’t even think of.

Cancer means you have to worry about things you never thought you’d have to worry about. Sex shouldn’t have to be one of them, but it is. I hope that throughout your cancer story you find your groove and keep it! I hope that sex doesn’t become difficult. However, be prepared because you need to make some adjustments along the way. Sex can change due to cancer, and that is okay. Physically your body will be different after treatments. You might look different, you might have scars, you might have numbness, and you will definitely feel different.

Don’t try to be someone else’s version of sexy. You’re your own version; embrace your cancer body. Celebrate the things you enjoy sexually and understand you might have limitations. Those limitations are okay. Find your new normal, embrace it, and enjoy life!

left-eye-9-1Erica, Left Eye, is a 31 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she can be found roboting or heading up the STEM program at the school where she is an educator. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with FD, chatting it up with her FD Family, and spending weekly visits with the Hoosier Kayak Club. Follow Left Eye on her own blog,www.tealelfs.com

*This piece was originally published by FD Alumni, Erica “Left Eye” Frazier Stum on I Had Cancer and we are reposting with the authors permission. 

The Cancer Dating Blahs

horsetooth-1Dating can be a beast of a headache. It’s no wonder that this topic inspires tons of articles in magazines, blogs, books, and conversations on television. There is so much weird etiquette to agonize over and different rules to live by. When do I txt him back? Do I play hard to get? Is he ghosting me? What do we disclose and when? It gives me hives just writing about it.

As a young adult cancer survivor/fighter, it has the potential to be a nightmare. There isn’t a guidebook for us and we, like many of our struggles, must make it up as we go along. Battling cancer leaves scars, physical and mental, and can impact us years after treatment passes. From issues such as chemo-induced menopause, infertility, P.T.S.D., neuropathy, and mastectomies there is no hiding the way cancer leaves a lasting impression.

So do you tell someone right away about your cancer history/present? What a conversation starter that would be! Let’s talk about chemotherapy over pasta, that will really get their motor running. There’s nothing sexier than talking about injecting straight up poison into your chest. Hey baby, want to see my port scar? Do you like bald chicks? Let me tell you about my scanxiety, I’m sure that’ll put you at ease.

Yeah, not exactly conversation starters many people feel comfortable with.

This one question alone seems so simple yet it’s so complicated. If you don’t share your experiences right away, are you really being honest and true tofdhighfive-1 yourself? But if you share too soon, there’s that fear of scaring people away. Because let’s face it, young adult cancer makes so many people uncomfortable. No one likes to hear about cancer in our age group. It makes people question their own mortality and no one wants to be reminded of how uncertain life can be. ‘That could happen to me’ is a valid and common fear that many young adults are not ready to be confronted with. Dealing with cancer can be an isolating experience. So it’s reasonable to feel pressured into not wanting to share those experiences right away. Who wants the risk of feeling othered when you’re trying to connect with someone new?

But how long is too long to wait? If someone cannot handle the tug of war you’ve played with your cells, shouldn’t you know right off the bat instead of wasting your time?

There’s no easy answers for this. And unfortunately, this seemingly simple question can be daunting enough to take the thrill out of dating. Issues in the same wheelhouse as your sex life doesn’t exactly help those thrills either. No one wants someone to be reminded of weird vagina pill commercials that come on during the Price is Right when you try to explain your menopause. And what about sexy time itself? Hey, did you bring a condom? Nah, no worries these eggs aren’t hatching, it’s cool brah! And speaking of infertility, what about that? No one wants to start talking about the future too early but wdozerkayak-1hat if you spend a significant amount of time with someone just to find out they only want biological children and that’s not a possibility for you? Then what? And since fertility options are an absolute mess for cancer patients, there are so many of us that cannot have children.

It’s a struggle in all aspects. Communication is likely the best option (I’m not Oprah though so don’t ask me!) but that doesn’t make it any easier.

On the flip side of all of this, someone worth your time will accept these things. And you deserve that strength in your life. There’s no right or wrong answer to any of these questions. Just a shared mutuality and frustration for how much cancer impacts every aspect of our lives. And that just sucks. The one thing worth saying is don’t isolate yourself. Don’t give up. And laugh it off. If someone freaks about your cancer and runs for it, be happy that they ran. Let them run as far away from your thriving booty as possible. They didn’t deserve those cancer fighting buns of steel anyways.

This is another topic that highlights how important it is to have a community to belong to that understands. One of the many life changing things about going on my first trip with First Descents is now that I have a community to turn to whenever I need it. There can be no isolation when you have a tribe of people supporting you that share so many of your same experiences. And that’s so important.

 

Lindsay (Dozer) Brookshier grew up in Colorado and spent half of her adult life in Manitowoc, Wisconsin. She and her six year old son currently reside in Fort Collins as she bulldozes her way through a MA degree in English literature while teaching college composition. She went on her first trip with First Descents summer 2016 to Hood River and learned how to white water kayak with initial terror followed by immense enthusiasm. Since then she has become hooked to the spiritual experience of pushing her limits, embracing nature, and Out Living It. One of her greatest passions is writing blogs that advocate for young adult cancer awareness with her favorite subjects centering on struggles of parenthood, patient advocacy, and self image. You can follow her most recent blog posts here: https://medium.com/@lindsay.brookshier

 

Step Away From the Mirror: Body Image and Cancer

If you are struggling with your identity and your image, whether you’re currently undergoing cancer treatment or are 10 years removed from diagnosis, know that you are absolutely not alone in your struggle. There are millions of women across the country struggling with image and eating disorders every day. We obsess over body shape, tummy flatness and that wobbly underarm bit that shakes when you wave.

fridge 2American women, in particular, seem to be more susceptible to the pressure to be thin, to look perfect. We count calories and worry about “muffin tops” and I don’t mean the delicious, rounded portion of a breakfast pastry. What happens, then, when you take unrealistic size expectations and overlay them on a population whose bodies have undergone drastic and painful physical changes in a short period of time due to cancer? How do you reconcile six-pack abs with a colostomy bag? Or horizontal scars where once there were breasts?

The first time I remember thinking I might be “fat” was at the age of 11 and I spent the next 10 years managing eating disorders, obsessive calorie counting and over exercising. Then as a college sophomore, I found myself receiving treatment for cancer and observing my body morph into something unrecognizable. My personal image issues crashed headlong into my cancer diagnosis and I remain, nine years later, damaged from that battle.

Those image struggles began pretty quickly after my initial admittance to the hospital for acute lymphocytic leukemia. The induction therapy was scheduled over four weeks, all inpatient. Every single day, I watched my weight drop. My muscles withered away from lack of use. My dancer’s calves, of which I was so proud, disappeared along with my hair and my identity as a young woman. So much for the perfect body. So much for calorie counting when you’re on prednisone and all you need is an Oreo Blizzard with chocolate ice cream. But you only have intermittent days when you actually want to eat, when you aren’t puking or lying in bed because you have zero energy while your mom does your laundry. When you find yourself in those situations, society’s female body standards fly right out the window.

After treatment, I gained weight but was so self-conscious about my body that I still wasn’t connected to my truest self. My cancer hasn’t returned, but I have struggled nonstop with its continued effects, the least of which has been weight gain and loss.

I want to say it gets easier, but we all know that isn’t quite true. I’m a realist who relies on positivity: As cancer survivors, we are stronger individuals for having faced down our medical demons. Our bodies – loved, hated, misunderstood – completely betrayed us. I had leukemia, and I distinctly remember thinking that my literal lifeblood had turned on me. Forget image issues; I had issues with my entire hematologic system.

For those of us who have had cancers that target the female organs, the struggle to re-discover ourselves is even more difficult. So what do we do? How do we get back to “who we were!”? Well, the good and the bad news is that we will never get back to who we once were. We get to figure out the essential parts of us that remain and are waiting until we are ready to start inching towards our new identities. It is incredibly intimidating to think of starting over but we are an elite group of individuals who possess an indestructible iron core of strength and we can figure it out.

fridge 1If we can believe in ourselves above all else; if we can internalize that we are powerful beyond our wildest dreams; if we can find those things that bring us the most joy, then nothing can stop us. I may never quite be at peace with my body, but I also refuse to give up on it. The best part is I have two secret weapons in this particular fight – the knowledge that absolutely nothing is more important than my health and a deep-seated belief that I can survive whatever the universe throws my way because I’ve already been put through its wringer.

I hope you can find strength to step away from the mirror, take a deep breath, and commit to embracing your scars, muffin top and body because you are a fighter.

 

fridge 3Caroline “Fridge” Bridges grew up in Chicago, IL, and has lived and loved life in Denver for more than five years. In 2009, Caroline went on her first First Descents camp, climbing in the Tetons, and the experience opened her eyes to the possibility of thriving after cancer. Since 2009, she has participated in three more camps, as both a camper and a volunteer photographer, and ran in the Boston Marathon and the Ragnar Relay Snowmass for FD. Caroline loves to give back through volunteerism and spends as much time running around in the mountains as she can. Follow her running and nutrition misadventures online at http://thoughtlessrunning.blogspot.com

Farmdog Surf Scholarship: I love surfing.

We received so many amazing submissions for the Farmdog Surf School + First Descents Surf Scholarship. It was so difficult to choose just one. All of our participants told incredible testimonials of how surfing has impacted their lives and helped them to embody the true meaning of Out Living It and we were inspired by each of you for having the courage to face your fears, push through, and continue living life to it’s fullest.

 

Check out his essay below

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I love surfing. I started a few years ago and fell in love with watching the surf report and driving an hour to the beach to try and surf. (I suck at surfing but I’m in love with it).

My parents have a place in Rhode Island that is good for surfing in the summer. New Hampshire is awesome for winter surfing.

My first board and only board was a 10′ Hobie. I spent some money patching it up and it was beat so I had to junk it after a couple seasons. Now I don’t have a board. I do have a paddleboard which I use on the lake.

I have gone surfing in Hawaii and the Dominican Republic. All small stuff but still a blast. I have gotten a lot of friends into surfing and they all love it.

Every year, I help Wounded Warriors with a surf day up in New Hampshire. We get disabled veterans on boards and get them surfing. It is such a site to see all the smiles on their faces once they start riding the waves.  I am a combat veteran myself and love helping out whenever I can. I also read that veterans that take pain meds on a regular basis don’t have to when they surf because it releases endorphins and they feel like a million bucks.

I was lucky enough to head to Colorado to ice climb with FD this past February. What an amazing experience with some incredible people. I love the staff and everyone I met on the trip. Just the other night I had beers with Thor and Ricki Bobby (local friends I met on the trip).

I never realized how everyone’s story of having cancer is the same and so different. We all went through extreme hardships but the mental and emotional endeavors were all different.

I always looked at the positives and kept pushing on when I was sick.  I realized after my trip with FD that I can’t really just forget about things as severe as they were.  Talking about them with my FD family was extremely helpful. Being a cop and a veteran I was taught to suck it up and keep moving.

Now I know there are other options.

I love surfing the east coast. You get up early and head to the water. Get out past the break and squint your eyes because the sun is coming up over the horizon, spit out some salt water. There can be five or fifty people out there and no one is saying a word. We are all just watching and waiting for our ride in on the perfect wave (hopefully stand up) then paddle out to do it all over again.

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Yoga for Cancer… & Stress, Strength, Mental Clarity and Everything Else You Could Possibly Want

Stuck in the belief system that if you’re not working out at high intensities or pumping heavy iron, you won’t see results, yoga was nowhere on my radar for years. My interest in yoga didn’t develop until a cleanse I was following recommended it as a gentle practice to aid detoxification. Committed to achieving the best results, I followed the advice and found acarly Bikram studio in Chicago. During my first class, I noticed my ability to perform the yoga asanas or poses was compromised on my left side. The trouble was due to a three degree tear of my PCL (posterior cruciate ligament). I was 28 years old at the time and felt defeated by my body’s lack of strength, flexibility and agility. But I wasn’t about to give up. I kept going back and after a few classes noticed I was able to move slightly deeper into the pose each day. My progress excited and kept me committed. After 30 days, both sides of my body were equally strong and flexible—nothing shy of a miracle from where I started.
My yoga practice has fluctuated over the years. I’ve experimented with different studios, teachers, and styles. Before my breast cancer diagnosis, yoga had taken a back seat to skiing, mountain biking and hiking. After my diagnosis, I was thankful to have this practice to fall back on. Yoga has served as the only form of exercise I have consistently stuck with throughout my treatment and healing. It is my primary form of exercise, and surprise surprise, I’ve never felt stronger, leaner and more fit.
There are many excuses one can make to avoid yoga including, 1) I’ve never done it, 2) I’ll hate it, 3) It’s not for me, 4) It’s for women only, 5) My booty looks big in yoga pants, 6) Yoga is for tree hugging, granola munching, crunchy people only, 7) I’m too wound up, 8) I don’t have time, 9) It’s too spiritual, 10) I’m not flexible, 11) I’m too tired, 12) I’m too sick, 13) I like beer and hot dogs and, therefore, couldn’t possibly do yoga, 14) Fill in your excuse here _____. If you find yourself making any of these excuses, yoga will likely be perfect for you!
How to Succeed at Yoga
  • Keep an open mind
Everything you do for the first time feels strange in some way. As adults, it’s uncomfortable not knowing what you’re doing. Check your expectations and insecurities at the door and allow your experience to unfold naturally. You might be pleasantly surprised with what you find if go in without any preconceived notions of what yoga should or shouldn’t be.
  • Find a studio and teachers you love
I stopped my yoga practice a few years ago because the gym I joined lacked the environment and teachers I desired. Instead of seeking out what I wanted, I quit. Now I’m at a gym I love, with a yoga studio that meets my needs, and has teachers I enjoy. Trust your gut. If the class or studio feels off to you, shop around until you find what feels right. If you live in a location where one of the daily deal sites offers discounts, I’d start there. I purchased a 20-punch card in Phoenix for $10 at what turned out to be an excellent studio. Alternatively, go with a friend and try their studio. See if they can get you a guest card. Some places will offer the first class for free.
  • Understand no one is looking at you
Recently, a regular in my class asked me to let him know if is underwear poked out during class. I said he’d have to figure that out himself because the odds of me looking at him, even though he was in the row ahead of me, were slim to none. Most people in your class have likely been doing yoga long enough to know what’s going on. We are focused on our breath and the intention we set for our practice. You might look around the room to figure out what you’re doing, which is natural. But the majority of us are in a world of our own. No one will notice if you can’t do a pose. One day soon, you won’t be looking at anyone else either.
  • Wear something you feel comfortable in
Some athletic-wear brands have contributed to the illusion that yoga class is a fashion show. It’s not. If you feel judged by what you wear, you’re at the wrong studio. Wear what you’d usually work out in and adjust going forward as needed.
  • Make it about you and what you need

We’re all on the mat for different reasons. Discover what you need and set an intention for each class. Listen to your body. If a posture is hurting, stop. Talk to the teacher. Let them know what’s going on. If you’re tired, rest. During my intensive treatment phase, I spent a disproportionate amount of class in child’s pose while everyone else toughed it out. I couldn’t have cared less. I was proud to be there and acknowledged the benefit of being in child’s or corpse pose, as opposed to being home in bed. Honor your body and what it needs.

Why Yoga Will be the Best Practice of Your Life
The benefits are immeasurable, but here are several reasons to get on the mat 
Decreases stress. Releases endorphins. Builds strength (inner and outer) and increases flexibility. Drains lymphatic system (flushing junk from treatment out of your body). Provides mental clarity. Enhances respiration. Leads to better bone health. Gets your blood flowing. Boosts immunity. Regulates adrenal glands. Supports proper digestion. Reduces pain. Improves your relationships. Balances your brain. Makes you happy!!! The benefits are endless.
I love my yoga practice. When my mind is spinning a mile a minute, it helps me reel in my crazy thoughts. When my body feels sluggish, tight and off, yoga provides me with energy I didn’t think I had. When I can’t let go of thoughts, they emerge and are released during class. When I’ve felt unable to workout at my usual levels, yoga gave me a way to move my body that felt nourishing and empowering. Today, as a result of my continuing yoga practice I am stronger than ever–physically and mentally.
Now that you’re all ready to stretch, strengthen and relax…..
Namaste!
Photo Creds: my strong, brave, fierce yoga teacher who captured me as I fell. Yoga is a practice.
IMG_4844CARLY HANA (LOTUS) PRZYSINDA GREW UP IN ROCHESTER, NY AND CURRENTLY RESIDES IN VAIL, CO WHERE SHE ENJOYS SKIING, MOUNTAIN BIKING AND HIKING. PRIOR TO LIVING IN THE MOUNTAINS SHE LIVED IN BOULDER, DENVER, NYC, CHICAGO AND SOUTH FLORIDA. LOTUS ATTENDED HER FIRST FD WHITE WATER KAYAKING PROGRAM THIS SUMMER IN JACKSON, WY AFTER BEING DIAGNOSED WITH IDC TRIPLE NEGATIVE BREAST CANCER ON APRIL 9, 2015. SHE CHOSE AN INTEGRATIVE HEALING PATH AND HAS AVOIDED SURGERY AND RADIATION. AS A NUTRITIONIST, LOTUS OPTED TO INCORPORATE A MIND, BODY AND SPIRIT APPROACH TO HEALING AND ENCOURAGES OTHERS TO DO THE SAME REGARDLESS OF WHAT TREATMENT PATH THEY’VE CHOSEN. FOLLOW LOTUS ON HER BLOG AT WWW.CARLYHANA.COM.

FDX Africa- This Is Way Better Than Planet Earth


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FDX Africa: This is Way Better Than ‘Planet Earth’

 

My new friend Spaceballs and I walk through the tall grass at the Lake Manyara Rift Valley and enter the clearing where zebras, jackals, gazelle, wildebeest and warthogs all roam close enough to kill us before we could utter “hakuna matata.” We turn our heads and see more animals. Then we turn our bodies in a full circle and see animals everywhere. We are wearing long pants and button-downs coated in permethrin to deter malaria-carrying mosquitos, safari hats, daypacks, sunglasses and binoculars.

All that lies between the animals and us is Lingato, our guide who is a Massai warrior. Lingato, dressed in a red sheet, holds a spear with which he can throw at and hit a precise blade of grass fifteen feet away. Lingato tells us about the time he killed a lion—out of self-defense and never for sport. “When lion attacks, I throw my spear from far enough away that if I miss then I can still grab my knife. That is my last line of defense. Maasai warriors do not fear the lion. Maasai warriors do not hesitate.”

 

Lingato says it is possible for two lions to attack at once. “I only have one spear, so I can only kill one lion.”

He doesn’t describe exactly how we would survive if two lions attack.

 

This is Africa.

 

* * *

 

I met Spaceballs the day we left for Africa, even though we live just 20 miles apart and share the same religion, sense of humor and employer. We registered for FDX Africa, a week-long safari in Tanzania through Mark Thornton Safaris. We booked identical flights for the trip including an additional day to visit Zanzibar, the semi-autonomous archipelago east of Tanzania. Half of Spaceballs’ large intestine was removed due to colon cancer. I guessed that meant the traveler’s diarrhea we all would inevitably get would speed through him even faster.

Spaceballs and I met the remaining group members either during our layover in Amsterdam, Netherlands, or at the first lodge in Arusha, Tanzania. A third of them had had breast cancer. Based on their discussions I considered that straight women love breasts more than straight men do, but Shredder clarified that’s only true for breast cancer survivors.

Bubbe—the loud, unfiltered, totally American and total New Yorker who had breast cancer several years ago—schooled me on breasts. I can now enter a conversation about the varying implant technologies and methods to keep them high on the body with strong pectoral support. Bubbe said, “A minute after Avocado [another breast cancer survivor] introduced herself to me I had to interrupt her and say, ‘Sorry I didn’t hear anything you said, I can’t stop staring at your breasts.’

“Avocado has like the BMW of breasts while I’m driving an old Hyundai.”

Bubbe is upgrading hers this spring. She let me cop a feel and I thought, Oh this is cool I’m touching a breast right now. I did not think,These breasts need upgrading, so maybe I’m not ready to enter that conversation quite yet.

Bubbe told me their breasts glow red when they shine a flashlight through them when in the dark, displaying their veins like a road map and their nipples (or tattooed nipples) like a silhouette. When Shredder had found this out a year after her surgery she asked her surgeon why he hadn’t told her. “Because then you would show them off,” she said he told her.

“I show them off anyway!” she had replied.

“You can do the same with your balls,” Bubbe told me.

Did I know this when I was a little boy and feel the same intrigue they feel for their breasts, now in their thirties and fourties? Probably, but I can’t remember. I walked away, opened the flashlight app on my phone and unbuckled. Bubbe was right. I offered a trade—me showing off my glow-in-the-dark body part in order to see one of theirs—but Avocado photographed hers and shared the photos with everyone without demanding anything in return. Like Shredder said, they love breasts.

While many of our post-campfire evenings revolved around breasts, our days revolved around animals. Our safari included walking and driving around the Maasai Steppe and Tarangire and Lake Manyara National Parks, and driving through the Ngorongoro Crater. For the first two walks, all twelve participants, our FD lead staffer and our three guides walked single-file in silence. One guide, a Massai warrior, held a spear and Rambo-like knife, and one guide held a gun as a potential last resort. We got close enough to many of the animals to see every detail through binoculars.

I never expected to get close enough to nearly touch a 900-pound living mass of muscle and grace. Full of adrenaline and awe, my evening at Rift Valley with Spaceballs and Lingato was one of my life’s best. Humans top the food chain because of our technology. But without it, we are no match for the animals we domesticate, kill and eat.

Sometimes that is true even with our technology. The next day, as we headed towards Ngorongoro Crater, our guide Elvis stopped the Land Rover when he spotted an elephant in the woods. It towered over the brush, its ears flopping as if listening to our whispers of, “Look at that giant fucking elephant oh my God!”

The elephant approached the road and stopped. It watched us. Would it turn back? Or would it charge? Our metal door and glass window would do little to slow the elephant’s tusks or legs. As much as human beings think we know—about cancer, about how animals think, about the benefits and detriments of consuming seven cups of coffee a day—we are generally ignorant.

The elephant continued on its way. Maybe it sensed we were simply cancer survivors there in peace and for the adventure of our lifetimes.

Childhood and young adult cancer survivors endure immense suffering and deal with additional effects later in life. Individuals who were never victimized by cancer say we are strong and badass. Sometimes we young cancer survivors agree. Sometimes they and we even think we are superhuman. During FDX Africa I considered the possibility that everyone in our group was a pussy compared to Tanzanians, many who live without electricity and running water. They make their own food, clothing and shelter; use every part of their resources, including their cows’ dung and slaughtered goats’ blood. After FDX Africa I returned to my cozy apartment three blocks from the underground train and one mile by car from a giant supermarket.

I wondered if the Maasai people whose boma I visited would want to trade lives with me. Would they want to exchange their physically, never-endingly demanding yet slow work for my stagnant, hyper-paced one behind a desk and monitor? Would they want a portable device that calculates, tracks and schedules every aspect of their lives so they no longer have to?

Walking through the jungle, with the sun both depleting my energy and soothing my worries, I understood why people and animals in Tanzania embrace the phrase “pole pole” (pronounced “polay polay”), which in Swahili means “slowly slowly.” We saw a lioness stalk a water buffalo, leading to a distant staredown between the two beasts. We saw a hyena chase a dik-dik (a small antelope), weaving through much larger wildebeest. In both instances the predators tired and quit. But they would be ready for the next opportunity.

Hakuna matata. This is Africa. And we fell in love with it.

FB_IMG_1457542064347Benjamin (Hippy) Rubenstein is the author of the Cancer-Slaying Super Man books. Connect with him on Twitter and Facebook. You can also read about his FD1 trip rock climbing in Moab, Utah.

Your Results Are Positive: The 90 Second Phone Call That Changed My Life

FullSizeRender (7)When I woke up on the morning of April 9th, 2015, I immediately called my doctor’s office to see if my results were available. They weren’t. I puttered around at my table until the phone rang at 12:14 pm. It was my OBG. My heart was pounding out of my chest as I answered the phone. She wasted no time delivering the scariest, arguably worst, news of my life. In under 90 seconds, I’d been diagnosed with cancer. My innocence was shattered in a matter of seconds. The color in my face was first to go, followed by the life-force draining out of my body. I was light headed and in fight or flight. Time was standing still. Blinking my eyes several times, I wondered: had I heard her correctly? Shaking, confused and bewildered, I called my boyfriend Doug and whispered into the phone, “my results are positive for breast cancer.” He asked, “you’re joking?”

Two weeks prior I was lying in bed feeling my sore and swelling breasts as my period approached when I found a grape sized lump on my right side. I was unconcerned and scheduled my slightly overdue annual. My OBG did not appear worried stating statistics were in my favor and what I felt was likely a fibroadenoma. She wrote me a script for a mammogram and prepared me for the possibility of an ultrasound. She encouraged me not to worry and sent me on my way after I shelled out $165 for a less than 15-minute appointment. When Doug offered to go with me to my next appointment, I confidently thanked him for offering and assured him I’d be fine–women get mammograms all the time. As Vivian in Pretty Woman said, “Big mistake. Big. Huge.” Regrettably, it was my mistake, and there was no shopping spree to follow.

I suppose I was slightly nervous about the unknown, but after squeezing both my breasts pretty hard to simulate the pain potential of said x-ray, I reasoned I’d be okay. My experiment proved fruitful, and I did not experience pain that some women speak of after having a mammogram. During my exam, I tried to read the tech’s face while she was taking images of my breasts. Nothing. Her poker face was solid. Once she had taken all the pictures she needed, I retreated to the waiting room to learn the radiologist wanted to get an ultrasound. At this point, even though my doctor had prepared me, I started to panic. As the tech scanned my breasts, I carefully watched her body language in another attempt to determine what she was seeing. Striking out again, I waited on the table, feeling exposed, for the tech to come back in and tell me the radiologist wanted to do a needle biopsy. The doc was only in on Monday and Tuesday, and it was Tuesday. I could either have the biopsy right then and there or come back next week.

Waiting another week for results sounded like torture, so I opted to have the biopsy on the spot. The techs mouths were moving, but what they were saying didn’t register. Were they talking to me? I found myself answering yes and no as I dialed Doug. At that moment, I wanted nothing more than to have him there with me. Why did I go alone? As I was on the phone, the techs were shoving papers in front of me to sign. Did they know I wasn’t present? Physically I was sitting in the exam room in a chair, but no one was home. Could someone please slow down to make sure I know what’s happening? I had no idea what I was agreeing to or not. During the call to Doug, the techs told me my procedure would be over before he arrived.

They treated this outpatient procedure as no big deal, and I’m confident saying neither of them had ever had one. As my friend and GiveForward co-founder, Desiree Vargas so eloquently put: “Biopsies are not “mammograms with a needle.” The best way I know how to explain what it feels like, beyond Desiree’s account, is it’s like having dental work performed [on your boob]. It’s not that the pain is excruciating, but it is terribly uncomfortable and awkward. Upon completion of the biopsy, I was told the radiologist surgically inserted a piece of titanium into the biopsied lump. Wait a second! Did anyone inform me this was going to happen? I’m not sure I want titanium in my body. It was too late.

Once the biopsy was over, tears streamed down my face. I felt violated, scared and alone. The pain was over, but I was shocked, confused and in a world of fear. The techs said I was strong. A phrase I’d become very familiar hearing over the upcoming months. They said a lot of women did a lot worse than I did. So… Couldn’t they have waited ten minutes for my boyfriend to get there for a little moral support, well aware this procedure left people feeling uneasy? Instead, as a consolation prize, they sent me on my way with the cutest little pink heart ice pack.

With the heart tucked into my bra to alleviate pain and swelling, I somehow found myself at my boyfriend’s staring out the kitchen window aimlessly as I dialed one of our friend’s who had been through breast cancer twice. I put on my best “everything is fine” voice and left a message. She texted me back later, “Honestly, they are so proactive with any kind of spot they find, just about everyone I know has had a needle biopsy.” I wanted to believe this so badly, but something about the radiologist’s demeanor left me lacking confidence that everything was going to be fine. Doug also assured me I’d be okay. I wanted to believe them both and did my best to manifest a positive outcome. Totally I thought, attempting to convince myself and block the radiologist’s cold and disconcerting bedside manner out of my head. I’d be fine. I had completed another 100-day ski season, been upping my yoga, decreasing my sugar, and was what appeared to be a very healthy young woman. Of course, I’d be fine.

Two days later my doctor called, “I’m sorry, your results are positive for breast cancer.” She asked me if I needed anything. If I needed anything? I needed my results to be negative. She asked me if I was going to be okay. Okay? No, I’m not okay. Cancer? At 33? Are you kidding me? We hung up. In less than 90 seconds, I received information that would forever change my life.

IMG_4844Carly Hana (Lotus) Przysinda grew up in Rochester, NY and currently resides in Vail, CO where she enjoys skiing, mountain biking and hiking. Prior to living in the mountains she lived in Boulder, Denver, NYC, Chicago and South Florida. Lotus attended her first FD white water kayaking program this summer in Jackson, WY after being diagnosed with IDC triple negative breast cancer on April 9, 2015. She chose an integrative healing path and has avoided surgery and radiation. As a nutritionist, Lotus opted to incorporate a mind, body and spirit approach to healing and encourages others to do the same regardless of what treatment path they’ve chosen. Follow Lotus on her blog at www.carlyhana.com.