October Survivor of the Month: Rose

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I know this is very late, but better late than never – right?

This is Rose. Rose has stage IIIc ovarian cancer. As someone who was diagnosed with late stage ovarian cancer, her story really hit home for me. She was told her had cancer earlier this year at the age of 37. She’s embodied the spirit of what it means to be a cancer fighter and I am so happy a bag found it’s way to her.

Her best friend Heather nominated her and I sent her the bag to give to Rose. Here are some photos from the surprise Britni bagging:

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Rose is currently going through chemotherapy and has had surgery. If you’d like to contribute to her Give forward fund please go here.

If you’d like to nominate someone to receive a Britni bag please email me at sarenaperez@gmail.com.

All nominees must be between ages 18-39, female, and have been diagnosed with any form of cancer. If chosen to receive a bag they must consent to be featured as the survivor of the month and remit photos of themselves with the bag. All bags are free. Survivors may nominate themselves or friends/family of survivors may nominate as well.

Blood on the Rocks

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I’m standing backwards on a red rock 350 feet above ground in the middle of the desert near Moab, Utah about to rappell down. I’ve just scaled it’s thin side with 9 other campers and some guides. The view is beautiful from that high, but I can’t see it. The only thing I can do is look my guides in the eyes to seek reassurance that I’m not about to commit suicide. It is deathly quiet save for the hollow breathes being shakily yet shortly exhaled from my terrified frame. The only thing saving me from certain death is some rope.

This is graduation day from First Descents.

A week before I had flown into Grand Junction, CO to spend a week rock climbing with this Nonprofit organization that helps AYA cancer survivors gain confidence and positive life experiences from outdoor adventure sports. Prior to leaving I rummaged pinterest and instagram looking for photo’s of climbs & rappells hoping to see some examples of what I might be in for. One photo in particular seemed amazing : a guy dangling off of an arch in arches national park. In the comfort of my living room that seemed exciting and fun. In my mind I would run up that arch and swing wildly and freely without a hint of fear.

Ha, silly rabbit…

In my regular waking city life I have forgotten a bit what real, visceral fear looks like. In fact, I am pretty much known in my circle of friends for being fearless. I regularly scare my girlfriend by stepping in front of speeding cars in crosswalks. I race down hills on my Specialized semi-professional racing bike. All my cancer treatments I bravely faced and really didn’t talk about being afraid. Back then, I wanted to accept whatever the universe had in store for me. If it was death, I didn’t want to be fearful as I crossed that great abyss. I wanted to be filled with love and so focused more on cultivating that.

But now, I feel fear. Real, genuine, visceral fear.

It all started the first day of climbing. We were learning to climb from the professionals at the Colorado Mountain School. The guides were compassionate, skilled and came with years of experience under their belts. My first climb was on an expanse of rock called ‘Wall street’, so named for the towering wall of rock that lined the street next to the Colorado River. As I looked up from the ground it looked very much like the cliff’s of insanity from The Princess Bride. I couldn’t help but picture Andre the giant climbing a rope with Buttercup on his back. The climb that day was small: 50 feet. On the ground my ego was not sweating it. In my head I would tackle this with ease.

About 10 feet off the ground I froze with fear and started crying.

I had no clue where these tears were coming from. There was no negative self talk telling me I couldn’t do the climb. There was only a feeling of being afraid to fall. One of the instructors, Lil Bit, climbed up and talked me through it. The camp photographer, Dickey, had already climbed up to the top to catch our images. I had supportive words flowing from above and below me. The tears ceased and I quickly shambled up the sizzling rock to tap the top bolt signalling victory. When I did there were shouts of encouragement from both campers and staff alike and I felt good. The second time I climbed that day I was rescued by Double. He climbed the entire way up with me. It felt good knowing I was not alone in something that to me felt like a struggle. Every time I completed a climb the guides would come over and hug me with proud looks in their eyes. It was incredibly validating.

The next day the tears only got more intense. Each day we did different, more challenging climbs from the day before. From the second day on I could feel the tears welling up the minute I saw the rock face. Instead of being excited like the other campers, I felt grim. Doing these climbs felt like work. I was also embarrassed because I was the only one weeping like La Llorona each day. I kept asking myself “what is WRONG with you???”. I heard campers talk about being afraid of heights but from the way they climbed you would never know. To my eyes, everyone else seemed unafraid and having fun.

Support is essential in environments like this and there was certainly no shortage of it. By the second day my hands were covered in blisters. On the third day we climbed a rock face called ‘ The Ice Cream Parlour’. I was on a craggy, crack climb when the tears started flowing and feeling very defeated when another camped who was rappelling down appeared next to me. Her name was Crush and her comforting voice and peaceful blue eyes got me to calm down enough to finish the climb. Even though I literally had snot seeping from my face, I didn’t feel judged. On that climb the blisters on my hands popped and as I climbed I would notice blood. I was giving everything I had to finish that climb – literally blood, sweat and tears. After I finished I actually felt good enough to climb another one, this time sans tears.

My entire experience with First Descents was overwhelmingly positive. I was impressed with the staff’s experience, knowledge and humility. I had one of the founders offering to carry my bags for me on hikes. I learned from these leaders that leadership is about making yourself a servant to the people. That great leaders are not only strong in body and mind, but compassionate and humble. Our camp mom and dad were a couple whose son had attended FD camps before he died at 22. I didn’t know it until the last day of camp but ‘dad’ was a relatively famous motivational speaker. This man exuded a calm, quiet wisdom and I enjoyed hearing about the places he had gone in his life. His counterpart was every bit the loving mother to all of us that week. When I left, I left feeling I had learned much.

If you have not gone on a First Descent’s trip yet, I highly recommend you check them out. Aside from making memories you’ll cherish, you’ll come away with new friends and experiences that challenge your worldview in a good way.

Since coming back home, I’ve noticed that old scars feel like they have are powerless now. I feel more joyful and present in my daily interactions. I also feel empowered to tackle my life.

Thank you FD, all my fellow campers, wacky & cricket, Daryl, Honeybucket, Dickey & peanut and all the guides. You all made a difference in this person’s life.

 

 

September Survivor of the Month : Toni

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For our survivor of the month of September, I would like to introduce you all to the amazing Miss Toni! She is a friend of my friend Lauren, with whom I attended the OMG conference in Las Vegas this year.

Toni’s sister Pam nominated her and told me how positive Toni was in the face of adversity. Toni was diagnosed with stage IV stomach cancer on October 31, 2013. She has created friendships with other cancer survivors but would love to connect with someone that has beaten late stage stomach cancer, so if any of you have – please message me and I will put you in contact with Toni.

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Toni and Lauren! It also happened to be Lauren’s birthday. Happy Birthday Lauren!

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One of the other things Toni’s sister Pam said about her was how stylish she is. I have to say she is right! I never looked that good going through chemo. Beautiful makeup job Toni and lovely head scarf!

If any of you have a loved one that is a female between the ages of 18-39 that you would like to nominate to receive a Britni Berner Cancer Bag worth over $200 and highlighted as the survivor of the month on this blog please email me at cancerbabesgroup@gmail.com.

Alex & Ani Benefit

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September is National Ovarian Cancer Awareness month, and to do my part to help fundraise I will be hosting a party at the Alex & Ani store in Emeryville, CA.

In case you have not heard of Alex & Ani, they are simply amazing. They make bohemian inspired jewelry and they have a rabid cult like following especially for their bracelets. Their jewelry is made right here in the USA so they help to contribute to their local economies. The brand was started by a 3rd generation Jewelry designer named Carolyn Rafaelian. Carolyn really believes in using recycled materials in all of her creations and the company strives to be as green as possible. I personally have several of their stackable bracelets and the thing I really like about them is that they are an expression of who you are. Each bracelet represents a part of who you are and slowly tells your life story.

The party will start at 6pm and go until 9pm. We will have lite bites and non-alcoholic beverages. I will be educating people about ovarian cancer and sharing my story. 15% of all the proceeds sold during that party will benefit the Circle of Strength ovarian cancer foundation. Come support women in your local community. Shop AND give back!

August Survivor Spotlight & Winner – Michelle

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So as promised, I will be giving away one bag per month for the next 5 months starting with August. These bags were made by the mother of my friend Britni, who died in July, 2012 from cervical cancer. One of the things Britni wanted to do was to create these bags to give to young women who were diagnosed with cancer to make them feel more supported. Her mother is now carrying that vision out.

Michelle was diagnosed with stage 4 lung cancer at the age of 29 years old. Before cancer, she was a waitress and loving mother to her 9 year old daughter. When she was diagnosed with cancer last year, it was devastating. The tumors had metastasized to both her brain and abdomen and her treatments were not working. It was hard to keep up hope in the midst of such a diagnosis.

Then Michelle was enrolled into a clinical trial by her sister.

The clinical trial has been working so well that her belly tumors have shrunk to being almost non-existent. Michelle says that before the clinical trial people thought she was pregnant because her tumors were that big. Now, the tumors in her abdomen and brain have shrunk considerably.

This clinical trial has given Michelle a new lease on life and hope for the future. She recently participated in the Oakland Relay for Life with me representing Cancer Babes and had a great time. Below are some pictures from our time at the Relay :

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Thank you Michelle for your strength and encouraging other women with cancer around you. You are an inspiration!

 

 

 

Cancer Babes Contest!

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As we approach the anniversary of Britni’s death, I find this time of year a little difficult yet also a bit heartwarming. As anyone who has read this blog for a good amount of time knows, Britni died on July 19th, 2012. One of the things Britni wanted to do had she survived is start a non-profit to give away gift bags filled with items to make a young woman’s experience with cancer more comfortable. While Britni unfortunately did not get to do this, her mother and friend Sarah are carrying on her legacy through these bags. I am sad I lost my friend, but it warms my heart that I get to be a part of something that will bring joy and comfort to more women going through cancer.

The above bag is a Vera Bradley bag custom embroidered with a logo designed by Britni’s mom. It is purple because that was Brit’s favorite color but also because it is the color for all cancers. Britni did not care about what kind of cancer you had, she only cared about how she could help. So with the help of Britni’s mom and her friend Sarah, I am giving away five of these bags.

I don’t want to spoil the surprise of what’s in them, but there is some good stuff! Stuff to soothe, practical things and fun things too. One of the things my family did for me when I first started chemo was to get me a “chemo bag” – a bag filled with things I could take the the infusion unit that would comfort me. This bag is filled similarly. Hopefully it will become a new young woman’s chemo bag.

Here are the criteria for the contest :

  • Must be a woman between the ages of 18-39
  • Must be actively going through treatment for any type of cancer (radiation, chemotherapy or surgery)
  • Must be in the United States.

Priority will be given to those who live in the bay area of California, who are between the ages of 18-30 and to those who have ovarian/cervival cancer.

The five lucky ladies will also be featured on this blog, on our instagram and on our facebook page. To enter, please send me an email either nominating yourself or a friend to cancerbabesgroup@gmail.com. Please tell me about yourself, your journey and how cancer has affected you. I look forward to getting to know all of you out there!

 

Cleaning Your Own Blood Off the Floor

Aside from being in remission from cancer, I have grand mal epileptic seizures. I’ve had them since I was 12, so being sick is something that is familiar to me. I’ve learned that I cannot always trust my perspective because several times in my life one minute I’ll be fine and then the next I’m waking up covered in blood. This past Monday was one of those days. I woke up at 6AM to go to a fitness class. The last thing I remember was putting on my sneakers at 6:21AM. I was going to leave at 6:30 on my bicycle. Instead, I found myself going down in the elevator in my building and not knowing how I got in there around 7:30am. I lost an entire hour. When I reached the bottom floor I started to exit the building. I ran into one of my neighbors when I opened the door and recognizing him blurted out “I had a seizure”. Being a good guy, he took me back up to my floor to help me get back in my house. I had exited my apartment without my keys. Somehow, I still had enough sense to know where both the maintenance guy and the apartment manager lived – both on my floor. Everyone kept staring at me with wide eyes. When I got back into my apartment I understood why. This is the scene I came to find:

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My face was covered in blood and my nose and front tooth were broken from falling into the side of my bath tub. There was also a white towel hanging with two large blood spots on it. So, apparently I got up and tried to stop the blood from my nose. It bothers me because I don’t remember any of it. It worries me because I left my house. Because in a post-ictal state I have no control over my actions. I’m concerned about what else I may do post-ictal. What if I wander into a street and get hit by a car? I live alone and there is no one to care for me should I have a seizure.

This is my fourth seizure this year. I went two years with no seizure activity and now it’s pretty much every other month. This is by far one of the worst I’ve ever had. It’s caused me to reevaluate things in my life. I’m having to spend almost $10,000 getting my front teeth crowned and I meet with a surgeon next week to see if my nose needs fixing. Plus more meetings with my neurologist and back on medications.

I feel like so much of my life has been about hospitalizations, medications and doctor visits. When does it ever end? How many people have had to wake up to see their own blood covering the floor?

I’m now considering getting a seizure dog. At least a seizure dog could be trained to summon help, bring a phone, or stop me from running out the door. I could put a spare key in his pack and at least I wouldn’t be locking myself out anymore.

Something has to change. I cannot keep waking up to these bloody, violent scenes. I cannot keep waking up to broken teeth and missing time. I stared at that bloody floor for three days before I finally cleaned it up. It was jarring and every time I went to the bathroom I stared at it. It was a stark reminder that I need to take my medication. That I need to take care of myself. That if I don’t, the next time I could die.

I’m not sure what it is yet, but something has to change.

Britni’s Birthday

Today I feel really sad.

Today happens to be Britni’s birthday.

I’m not sure it was a conscious sadness because of her birthday to be honest, but I find it an awfully interesting coincidence. This morning I woke up fine. I was supposed to go to a cancer registrar’s picnic but decided against it. Instead I watched Gravity . That’s where the sadness was first palpable.

There were aspects to Sandra Bullock’s character I could relate to. The sadness of losing someone you love. A part of you sort of wanting to die because it’s the end to all the pain you feel. Because it’s easier. Then that instinct for self-preservation kicking on and driving me to overcome all my challenges. But it left me a bit blue. When I get blue I get tired, so I ended up sleeping most of the day. 

I really wish I could find someone of the last photos I took of Britni at her birthday, but I can’t. They’re somewhere on a little disc that goes in my Nikon and I do not have the energy currently to find it. It’s times like these I wish I had friends I felt comfortable being vulnerable around. But there isn’t anyone right now. Tell the truth, I’m pretty used to dealing with my life in the privacy of my aloneness but I think how nice it would be sometimes to really form a real human connection with another human being. It just seems so hard now. I think we all are too dependent on all the trappings of these physical bodies and we fail to see what is real and important. If you didn’t have work to get up to and go to tomorrow, what would be important? For me, I chase meaning. 

I always feel like I can never get enough meaning. It’s like a drug for me. Meaningful experiences make me feel alive. Every time one of my clients would tell me how much I helped them or changed their life it made me feel good. When all is said and done and we are reflecting back on our lives on our death beds all we have are those memories. The memories that comfort us and make us feel things. All those first kisses, caresses, lost loves etc.

Meaning is like a drug and I want to keep adding to my stash. It’s what drives me to keep doing good things. To feel like I had some purpose here.

Anyhow, happy birthday Brit. We all miss you down here.

Help us launch Cancer Babes

Post-OMG!, my life has gotten infinitely better. I am feeling more inspired to create change in the AYA cancer world and I see the need for doing so is great. I am a complete novice to the non-profit world, but I am learning as I go. I am thankful to be supported by most everyone in my life including my friends, fellow cancer survivors and family.

Now, It’s time I ask for help.

I am currently working on a website for Cancer Babes which everyone can look forward to by the end of this month. I currently have some people working on a logo. I filed my DBA and will be opening a bank account for our cause. What I’m currently needing most is legal assistance and advice on what steps are necessary for me to take. I am also in need of professionals who would be interested in sitting on a board and helping us fundraise. Sectors that could possibly be of use in our mission are Biotech, Oncology, Entertainment, Law, Clergy etc.

Why should you help Cancer Babes?

The mission of Cancer Babes is simple : to provide peer based support to young women diagnosed with any cancer under age 40. It was started two weeks after my own diagnosis when I quickly realized how very little support there really was for someone battling cancer in their 20’s and 30’s. As a result, many young women never find help or visit a support group and often have trouble discussing their fears, feelings or feel comfortable asking questions. Cancer Babes aims to change that. We have found that young cancer survivors are more likely to discuss their feelings, ask questions and feel an increased sense of hope when they interact and build friendships with other cancer survivors their age. We help to facilitate that by leading support groups with their peers, creating fun “no pressure” environments where they get to bond and have fun and help to educate them about issues pertinent to them and their cancer.

How can you help?

We can use any and all help! Currently we have an exceptional need for legal advice. If you are a lawyer who cares about our cause we invite you to reach out to us at sarenaperez@gmail.com. We are based in Oakland, CA. Other ways you can help are helping us to fundraise. If you’d like to help Cancer Babes raise money for lawyer fees’ or if you’d like to donate please contact sarena as well. You can also like our facebook page, join our meetup group or follow us on Twitter @CancerBabesRock .

We hope you’ll care about the lives of young women affected by cancer as much as we do.

 

 

 

 

OMG Summit

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Last week I attended the premier conference for young adults with cancer – the OMG! Cancer Summit by Stupidcancer.org. It was truly a transformative experience in many ways. If you’re a young adult with cancer and were deciding whether or not to attend, my advice to you would be to go.

When I first booked my tickets I was going alone so there was part of me that was concerned I wouldn’t have anyone to hang out with. I had been talking to several of the girls who were also going over facebook and we decided to all hang out. I met even more friends there so never had to worry about being alone. Together we dined, clubbed, and supported one another during the week.

The conference started off with a tour of Las Vegas…

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Our tour guide, Judy, has lived in Las Vegas for close to 50 years and was very knowledgeable about the history and culture of this new city. Her husband worked for the casino’s at Bally’s and said Las Vegas had been good to them. She first took us to the Las Vegas sign where Elvis was taking photos with people. I had always wondered where this sign was as I never saw it the last time I visited Vegas. Next we drove down the strip making stops at the Bellagio, Fremont St, and went to the top of the Stratosphere. The view was absolutely stunning up there and one of our OMG’ers actually jumped off the top of the stratosphere on their Insanity ride. It’s a free fall in a harness basically that starts at the 108th Fl. I saw some other people jump off and it looked really intimidating. But Chris did it embodying that “Get Busy living” spirit!

Later that day we had the OMG pool party. The we got to use the back pool of the Palms and their private suites by the pool. The weather was amazing that day : in the high 70’s/low 80’s with a breeze to cool you down. They had a professional photographer taking photos while people relaxed poolside. They had hors d’oeuvres like chips and guac and virgin strawberry margaritas. What I mostly enjoyed was getting the opportunity to relax with my girls.

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The next morning I stumbled out of bed at 7AM to do a fun run 5k. Considering I had been out at a free O.A.R concert that OMG got us tickets to and then partying at Tao Beach at the Venetian I was pretty tired. But we got these really nifty pullovers provided by Ulman Cancer fund :

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In case you guys don’t know who the Ulman fund is, they provide scholarships to school for cancer survivors. I fully intend to apply next year as I missed the deadline this year.

One of my favorite parts of the entire summit was getting my hair and make-up done by the Survivor Glam Squad. So many female cancer patients suffer from self esteem issues as a result of their cancers. The good news is that the SGS is here to help! They did my make-up and hair so I looked super sultry. Check out the after below…

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They made me feel really beautiful. I was all done up for the First Descents film party where they screened independent shorts made about outdoor adventure sports. Later that night we went out to Ghostbar which is on the 55th Fl and partied the night away. One of the neat things about Ghostbar is the see through floor. Being the fearless girl that I am, you know I was standing, dancing and even jumping on it. It freaked a lot of people out!

Day 4 brought the breakout sessions which are basically classes. The ones I chose all reflected my decision to go into advocacy. I attended one on advocacy burnout, forging partnerships with cancer centers and my personal favorite Tambre Leighn’s “Life After OMG” class. She is a cancer survivorship coach (Who knew there was such a thing??) and she spoke to us about the importance of having a survivorship plan. No one had ever spoken to me about one before so it was really nice to hear. She is a lovely woman with an amazing story and I advise all of you to check her out here.

I was also nominated for a Get Busy Living award which was very exciting. I did not win, but that’s ok – the prize went to a young lady who definitely deserved it. But check out my nifty consolation award…

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Here are some photos of me at the ceremony…

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Yup, that’s me with Matthew Zachary – founder of StupidCancer.org and AYA cancer survivor. At the closing ceremonies one thing he said really stuck with me : that each individual can make a difference. Since I’ve come back from OMG I’ve really been inspired to take action on making the world a better place for AYA cancer survivors. I’ve partially built a board of directors for cancer babes, started working on a website, started a facebook page that within 24 hours had over 100 likes and I’ve got my DBA certificate for Cancer Babes so I can open a bank account and start fundraising for the money to pay the attorneys to file the 501(c)3 paperwork.

All in all, it’s been a very good week.