A Long December

A long December and there’s reason to believe
Maybe this year will be better than the last

This month has been rough. This month marks the third Christmas I’ll have survived since my initial diagnosis in 2011. The first half of 2012 was about saying goodbye to a lot of things and being surrounded by love. I and many of those who knew me I don’t think expected me to live past that year. While I’m glad to be alive, there is a lot I am also sad for.
I can’t remember the last thing that you said as you were leavin’, Now the days go by so fast
   I recently experienced a break-up. Even though it was me that did the official breaking up, I’m sure I’m not the only one who felt that relationship was over. What pains me about break-ups is not so much the loss of the romantic affection, it’s the loss of a friend. All the breakup’s I’ve been through that is what hurts the most for me. Over the 3 months we dated, I spoke to her mother who is a cancer survivor quite a bit – even skyping in with their family for Thanksgiving at her mother’s behest. The kindness of that gesture was not lost on me as I was alone for that Holiday. Today, I noticed her mother defriended me on facebook. I understand why, but it hurt me. It hurt me because in an instant I am no longer likeable. I am no longer a human being who also went through cancer that shared some things in common. Perhaps now I’m the horrible person who hurt her daughter. Now, I’m the villain. Now, I’m no longer even considered a friend. Now, they don’t care how much pain it will cause me to be alone during Christmas. Now, there are no invitations.
And it’s one more day up in the canyons
And it’s one more night in Hollywood
If you think that I could be forgiven I wish you would
   Whenever I feel this kind of intense pain, I always go back to the relationship that pains me the greatest : my marriage. I don’t regret leaving that marriage, it was the right thing to do. I wish he would forgive me for doing so. When I was going through cancer treatment and was pretty sure I was going to die, I had my mother find my ex-husband and write him a letter asking him to please call me. Then I wrote him telling him I was dying, hoped he was well, but badly wanted closure before I died and to please call me. That I did not want to upset his life or any of his relationships. He never called. I have recurring dreams still begging him for forgiveness…almost a decade later. In my loneliness, I remember when we loved each other. How we would spoil each other during the holidays. How we would make tamales together and eat them. How we would drive up from Los Angeles to Sacramento to visit my family listening to When Soul Meets Body, by Death Cab for Cutie when Death Cab was brand new.
The smell of hospitals in winter
And the feeling that it’s all a lot of oysters, but no pearls
   The scary thing about this type of melancholy is I’ve gotten very good at hiding it. I still go to work at the hospital with smiles on my face and am productive. I’ve paid particular attention to the suicide prevention emails that have gone out recognizing that this time of year is difficult for many of our patients. I wonder when or if anyone will notice it is also a difficult time for me. I think of suicide often. But I don’t talk about it with my friends or family. I don’t reach out. I find it incredibly difficult to ask for help. Firstly, I know I will not actually commit suicide. I don’t want to scare people or have people think I’m threatening suicide to gain attention. I discuss my feelings with my therapist because she’s really the only person I trust to know what to do and what to say. Friends are well meaning but typically friends and family want to tell me how to change it instead of just listening and asking questions. These types of topics are uncomfortable for friends and family. I also don’t feel I’ve been a good enough friend to ask for help. I never call them to ask them how they’re doing – why should I expect them to give to me when I’ve not given anything? I think to myself “It’s not their responsibility, it’s my own.” These are the thoughts which drive me further into my prison of isolation. I’ve genuinely tried to do a lot of good work in these 2.5 years since I’ve gotten better. Right now, it feels like it’s all been in vain. Now matter how good of a person I try to be I will never be loved by people.
I can’t remember all the times I tried to tell my myself
To hold on to these moments as they pass
   Since my divorce in 2006, I tend to be hyper present during moments I want to cherish and hold onto as they are happening. This line from the song resonates with me deeply. Especially concerning people. When I’m around someone I care about I’m trying to hold onto them while they’re still in front of me. I study the lines in their faces, how it feels to have them in my arms, the smells associated with them. Because I know there will be a time that comes when I can no longer see them. I remember doing that with Britni. It’s one more year without her. One more year without a lot of people I’ve cared for in my life.
   I wish I could make this a more upbeat post. In the early days of this blog, I was very real about my experiences. I intimately detailed my fears, my sorrows and my joys. Now, as I’ve turned this page into a space for advocacy, It’s become a little less personal. A little more polished. There are so many people who suffer through depression silently. I can’t do it anymore. With the death of Robin Williams (Which affected me deeply), I can’t keep silent anymore. This is my experience and I need to honor it. I know it will slowly get better, but right now it’s awfully difficult just to get through the minutes.
I hope this Christmas will be better for all of you out there.

November Survivor of the Month: Kristen

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I first met Kristen back in April at a swank party in the Palms hotel 55 floors up above the neon lights at the OMG conference being held in Las Vegas. She was a New Yorker and we spoke for a while about our cancers. I remember her honesty in discussing her cancer and admiring her for her openness and honesty with a virtual stranger.

Kristen’s journey began in February, 2013 when she was diagnosed with stage IV colorectal cancer. It’s scary as hell to ever hear the words “You have cancer”, but to have them followed up with “late stage” is unimaginable. But Kristen has not let that stop her. She still worked, went through her treatments, flew across the country to dance on an invisible floor 55 stories above Las Vegas and more. I feel Kristen really embodies the spirit of what it is to truly live. In her blog Kristen speaks candidly about her experience. I highly recommend reading it.

Here’s what she had to say about receiving the Britni bag from Cancer Babes:

After the week I have had, to come home to such an incredibly thoughtful, practical gift brought tears to my eyes. From cancerbabes, my friend Sarena's organization. This package came with a beautiful card with a picture and story of a young girl who has passed- her name is Britni. Reading her story in the card....just what I needed to remind myself I have a responsibility to those we have lost to get my ass back up and fight this disease with strength and hope. Thank you Sarena- I couldn't imagine something I needed more today than this.

After the week I have had, to come home to such an incredibly thoughtful, practical gift brought tears to my eyes. From cancerbabes, my friend Sarena’s organization. This package came with a beautiful card with a picture and story of a young girl who has passed- her name is Britni. Reading her story in the card….just what I needed to remind myself I have a responsibility to those we have lost to get my ass back up and fight this disease with strength and hope. Thank you Sarena- I couldn’t imagine something I needed more today than this.

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She expressed feeling moved by Britni’s story and I am so glad it helped to make her feel better after going through a rough week. I consider her a friend, an ally, and an insaneful brave human being. In her spare time she volunteers for organizations such as Stupid Cancer in New York City.

If someone you know or yourself could benefit from a Britni bag, please send us your story or the story of the person you would like to nominate to sarenaperez@gmail.com. Bag criterion: the person must be a young woman diagnosed with any stage and type of cancer between the ages of 18-39 actively engaged in treatment. Individual also must consent to being featured as a survivor of the month on this blog and having their likeness shared on social media.

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.

toni

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

alexandani

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

michellebag

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.