start close in

START CLOSE IN by David Whyte

Start close in,
don't take the second step
or the third,

start with the first
thing
close in,
the step
you don't want to take.

Start with
the ground
you know,

the pale ground
beneath your feet,
your own
way of starting
the conversation.

Start with your own
question,

give up on other
people's questions,
don't let them
smother something
simple.

To find
another's voice,
follow
your own voice,
wait until
that voice
becomes a
private ear
listening
to another.

Start right now
take a small step
you can call your own

don't follow
someone else's
heroics, 

be humble
and focused,
start close in,

don't mistake
that other
for your own.

Start close in,
don't take
the second step
or the third,
start with the first
thing
close in,
the step
you don't want to take.

life

today i found myself out in our "garden" (read: little strip of dirt under mailbox)
i was looking for a productive release for my emotions (i've spent the past 4 days crying, getting pumped full of fluids in the hospital, and alone in bed). physical labor seemed appealing. i went out to water the sunflower seeds i planted a few weeks ago and was surprised to see little green leaves popping out of the soil. what did i do when i saw them? the same thing i've been doing all week... i cried.

this time for a different reason though. in a week filled with anything but a feeling of life, there life was. these little green leaves gave me a little feeling of something that has been missing this week-hope.

i've cried non stop since tuesday afternoon. i couldn't eat, i couldn't sleep, i couldn't drink. my heart has never been broken like this before. my chest feels a different kind of pain, this empty, hollow pain, and my bones ache. i haven't sucked it up and plowed through like i normally do and instead just let it all hit me and it's really, really sucked. i know i won't feel like this forever but man do i feel this right now.

but as usual, i'm never good at staying sad long. today i felt a little hope. today i got some pieces to the puzzle that will be creating a family and that made the hurt hurt a little less. that's let me give myself permission to focus on my health for now, this surgery and hopefully unsuccessful search for cancer. all of the next steps depend on the outcome of this step, so the surgery search is what's on my mind for now and what i should be discussing if anything.

again, what would be helpful when i'm ready is the ability to reach out to any ovarian cancer survivors or any women who have had their ovaries removed at a young age. AFTER surgery, i will have to start thinking about the next steps and that is something that would help me make the best decision possible for my long term health. if you know any, please let me know.

what would you do if you knew everything was going to be ok?

life has a way of always continuing and i'm thankful for that. thanks for all of the support and love. feeling more like kayla today and i'm hanging on to that.

Once again I turn to social media to share news to the masses. This is really just an easier route for me than individual contact, since I have so many special people in my life. And I am looking at doing what is easier/best for me at the moment.

Two weeks ago I had a PET scan done to investigate back pain I've been having. My back came back clear and the pain is just the result of extensive radiation damage. My ovaries showed suspicion and my doctor had me follow it up with an ultrasound. The ultrasound showed complex (and pretty large) cysts in both ovaries and unfortunately they cannot tell what they are made of, just that they aren't fluid like a normal cyst. I feel optimistic and realistically I always knew my BRCA2 mutation and cancer history put me at risk for ovarian cancer. I think this news felt a little out of nowhere and sudden but I know the cancer investigating routine this time at least. I teamed up with a gynecological oncologist and have surgery scheduled on February 27th to explore my ovaries and do biopsies. In the event that things appear unexpectedly bad in there, they would remove my ovaries immediately. This news led me to a fertility doctor.

The fertility doctor discussed all the ways that creating a family is possible. He did some tests which showed that because of the chemotherapy I had and the intensity of it, my ovaries are no longer producing eggs. Ovarian damage or failure can happen with some chemotherapy drugs depending on the type, dose, and length of treatment. To my understanding, this is unrelated to the cysts in my ovaries.

I am in shock. The news of my fertility has been devastating and I am heartbroken to find this out. Children have always been my life and motherhood my dream. To be honest, this has been more painful than the cancer diagnosis. At least I knew that was temporary. My body had shown so many signs that everything was functioning as it should down there. I understand that I have many options, lots of really great ones too, on how to create a family but I'm having a hard time giving them much thought at the moment. I need some time to grieve and process.

I felt like keeping much of this information to myself this time around but ultimately have decided to share some of it for a couple of reasons. I know that sharing my experiences can help others and will when I am ready to do that. I also know that I need time and this seemed like a better option to let my people know that instead of just ignoring all of you. Additionally, as much as I wished I was, I am not the tough cookie I appear to be without the love and support of my friends and family.

What I need most right now is to let the tears fall and the hurt hurt and to be okay with that. Keeping my chin up like I usually do doesn't feel right at the moment. I don't feel like talking much or to most people right now but I know that if I need to I have many wonderful ears ready for me. If you're curious about how chemo can cause infertility, the internet has plenty of answers. If you're curious about these complex cysts, my doctors will have answers soon and I will be sure to pass along the information when I can.

Like I said, I'm not ready to ponder other options of family creation yet but if you happen to know of anyone who has created a family in alternative ways from egg donors to adoption, I think I would like to hear from some of them when I'm feeling up to it. Also if there are any ovarian cancer survivors out there or women who have had their ovaries removed at a young age, I would eventually like to talk to them too. My email is kayla@reimagine.me and I think for now I would like to have things forwarded there and will read and respond when I'm ready to.

I know how I'm feeling is appropriate and I also know that it is temporary. I will definitely seek more support and conversations about all of this when I'm ready. I've become very good at expressing what I need and what I don't. If you could keep me and my family in your thoughts and prayers that would be greatly appreciated.

xox

Sexvember

I started the month of November with a clear mission. Cancer had taken a lot from me but I was determined to take some of it back. The loss that bothered me the most was the disconnect from my body. It’s hard to take care of something you don’t care for and I wanted to care again. I wanted to feel feminine again. I wanted to feel sexy again. So I assembled a team of my best gal-pal goddesses, the ones who embodied every aspect of being a strong, sexy and smart female, for missions and assignments to guide me on my journey. I reached out to the one man I felt like I could trust with my deepest struggles and darkest visions of myself, for his help and suggestions as well. And in no time at all, November became “Sexvember.”

If you’re thinking that my mission for the month was to reconnect with my body through connecting with another body, you’re wrong. Mostly wrong, anyways. To be honest, I thought that was going to be a cure all to thing disconnect. Sex and sexuality is a huge part of being human and I was so far removed from either. When my friends turned twenty-four, twenty-five and twenty-six, their lives continued to be filled with adventures (many of them horizontal) with the opposite sex. When I was twenty-four, I was diagnosed with cancer and spent my twenty-fifth year and what I’ve lived of my twenty-sixth year wrapped up in that diagnosis. Want to know what I’ve thought about most during this period of time? Survival. The first disconnects from my physical-self, sex and sexuality grew from that.

The American Cancer Society describes the difference between sex and sexuality in the following way: “Sex is thought of as an activity-something you do with a partner. Sexuality is more about the way you feel and is linked to your need for caring, closeness, and touch.” Some patients are lucky enough to have a trusted partner by their side through out, for a safe place to navigate cancer, sex, and sexuality. A lot of patients are like me though and did not. Having only lived one experience I cannot say which is easier. What I can say though is this disconnect from my body and my sexuality has affected my self-image and relationships. I have spent a year and a half feeling awkward and exposed. How do you begin to partner with another when you’re so uncomfortable alone?

So Sexvember began filled with tasks like buying pretty underwear and dressing up. I had to get flirty with strangers and make some purchases that my father would be uncomfortable reading about. About halfway through the month I found myself in a really great place. I had yet to see how I felt with a man, but on my own I was feeling quite confident and even a bit sexy again. Conscious practice paid off once again. With these feelings I also found hope and a new zest for life.

When I felt ready to see how this newfound strength lasted with the addition of another, I did. And how did this reborn sexy, cancer diva fare? She didn’t. And it wasn’t because of timing, it wasn’t because of setting, and it most certainly wasn’t because of the partner. It took a long month of reflecting and a lot of emotions to figure out what that was. Eventually the why behind my inability to feel any sort of confidence underneath my clothes and the privacy of quiet bedroom stemmed down to one thing: Shame.

I was ashamed. I am ashamed. I’m ashamed of my scars. I’m ashamed of the results that what I thought would be my only round of reconstructive therapy brought. I’m ashamed that I’ve had plastic surgery. I’m ashamed of my physical restrictions. I’m ashamed of the way my whole body has changed. I’m ashamed of the wimpy limbs that used to be full of muscles. I’m ashamed of this Tamoxifen “pooch” that sits on my stomach. I’m ashamed of this often-insane afro. I’m ashamed. And this shame combined with worry most definitely affects desire.

I wasn’t aware of this shame until recently. I powered through every change and never had to consider or feel the consequences of them deeply. Again, all that mattered was survival. Now that I’m surviving, a drive to reflect has surfaced. To say losing something like your breasts is distressing is an incredible understatement. Maybe it shouldn’t be, but it is. In a world wrapped up in beauty and breasts tied to womanhood, saying goodbye to these meant saying goodbye to some security as well. Insecurity has caused me to withdraw at times. And if the visible scars aren’t powerful enough, there are also the scars that cannot be seen but instead felt in my heart. With a changed view of myself and an uncertainty about my future, I am affected and others are too.

 This is a problem. But like any problem, a resolution cannot be found until the source is identified, and thankfully I have found the root, all wrapped up in shame.

So how does one solve a problem like this? When I do solve it, and I will, I’ll let you know. In the meantime, I am working towards a solution in various ways. An easy place to start for me was through exercise (combined with a lot of patience). If I’m missing my muscles, I’ll rebuild them. If I’m feeling the weight of my physical limitations, I’ll do what I can to shrink them. Making an effort to do what I need to to feel beautiful is in my control as well. Sweatpants are comfortable but they don’t make me feel good. Red lipstick and gold hoops on the other hand can do that. Another way is just spending time with my unclothed body. Great trauma and change happened in such a small amount of time and I haven’t given myself much of a chance to familiarize with it. What to my scars look like? What are my implants like? What parts of me were left untouched? What little bits of me do I still love?

The biggest task though is to improve my self-image. I may not care how others view me, for that is out of my control, but I do care deeply about how I view myself. For me, this has come in the form of finding a positive twist on a negative thought and as usual, celebrating any little bit of myself that I can. My feet didn’t change much from cancer; they are still the same feet that carried me through many miles of running and many days of teaching. My legs, though slightly altered, are still the same legs that powered me to finaling at two international swimming competitions. My stomach, different now than before cancer, survived chemo and surgery, and shows glimpses of the athletic core I used to own. My chest, completely changed, bears mark of my strength and truest courage and houses a heart that is still capable of loving a man and caring for others in extraordinary ways. My arms are limited with their range of motion and ability, but they can still carry a surfboard and offer hugs. And on my head sits hair that is shorter than before, but my face still lights up when I smile and my curious, chaotic mind is still in there.

The people I am loved by practice a much greater patience than I possess which allows me to be patient with myself and the timeline that my healing is happening on.

I don't know what I'm trying to offer you through this writing. Maybe just that if you're feeling anything like this, you're not alone. And you're not crazy- I mean, I'm not and if the feelings are mutual then you aren't either... Right?

I've found the best way to solve a problem is to acknowledge the source. I know the ending to this chapter that I want. And I like my chances of getting there.

Keep on trucking, everyone....

senor change

I frequently say that cancer changed me. But maybe it just coincided with a time I was growing anyways and I would be who I am today without it. Maybe it was the push I needed to become who I want to be. Maybe it was the excuse I was waiting for. Maybe.

What's for sure is a change. I think some people find parts of me now unrecognizable. I think some parts are the same. 

I received a letter recently that made me reflect on this from the person who knows me better than anyone else in the world. He said the glimpses of who I was complement the new bits of me. I am thankful that there are unfamiliar pieces to me. It means I've changed. It means I've grown.

I lived to please. My happiness came from others happiness, often involving sacrifice on my part. I was always obedient, even to those who had no authority to control me. I listened and did was I was asked, always feeling incongruence to a voice inside of me wanting a different way. I never spoke out or spoke up. 

I remember the first time I did though. It happened after I had created somewhat of a safe bubble to survive cancer in was threatened. I had a choice to float off in another's direction or stick to my plan. I stuck. I stuck once and have been sticking since. I mindfully rebel- because I learned the difference between selfishness and self-preservation. 

I don't need the praise and approval of others for worth. My spirit comes from learning myself and loving myself. Being honest with my flaws and working my weaknesses, while appreciating who they created when combined with the good parts. 

I am not a girlfriend or a daughter. I'm not a sister or a patient. These are roles I'm in but offer little praise to the generous, slow listening, squirmy, growing, smiling, curious, one of a kind of woman I am. I'm tangled in no one but me- making me responsible for my needs, wants, choices, thoughts, and emotions. It also relives me of the responsibility of all those things for anyone else. My heart is plenty for me to control.

My character is without threat when I am in control of myself. I don't carry negative burdens from others because I choose not to. My relationships are loving because I invite love and not abusive because abuse is uninvited. Love comes from a place for respect and freedom, with the same pure intentions I love out.

Along with control of my heart and mind comes control of my body. My body is incredible and carried me through hell and I choose to honor it and cherish it, actions I didn't do before. I choose not to partake in situations that make it feel small, foolish, or anything less than the miracle it is like I have in the past. It is a new body for me to grow into before anyone else has the chance, with great tenderness and love.

I am strong and brave and continuously growing. I choose to forgive others and finally myself as well. My spirit is without compromise and my body has many, many years left to offer.

We get by with a little help from our friends

“They told me not to worry about it.”

These are the words my friend used to sum up a recent doctor’s appointment she had. This friend was someone who was present for every minute of my fight against cancer, from diagnosis to clear scan, so when she found a lump in her own breast she went right in to have it examined. Her doctor said there was definitely a lump, ordered an ultrasound and mammogram for her, and sent her home with a “don’t worry about it.”

Empty phrases like that, along with “I’m sure it’s nothing,” “God wouldn’t give you more than you can handle,” and various others are often shared to offer peace and comfort. In reality they usually invite a daydream involving punches to the speaker’s face. I understand why the average Joe says them, it’s what we’ve been trained to do. You fill the uncomfortable spaces that follow bad news with anything you can. But I find it particularly aggravating when a doctor says this. Are you sharing this because you’ve already felt 10 lumps in other breasts today, and know that the majority of them are actually nothing to worry about? Because to me that feels like you are minimizing my feelings surrounding a serious topic. Are you saying that because it’s what you think I want to hear? Well let me make something clear to you doctor: that is not what I want to hear.

So my friend takes her prescribed tests and the number to call for scheduling them. The first location offered her an appointment in a week and a half, and the second had space for her in three weeks.  I wish hearing their schedule availability was as shocking to me as it was to her. When I found a lump in my breast, I was told I could be seen four days later. When I found the lump I also found this borderline crazy; the leading lady within myself marched into the doctor’s office that very same day and demanded to be seen even though my appointment was days away. And when I was told I would have to wait a week for an ultrasound, you better believe I called other offices until I found one that would see me in two days. I told her it probably would be fine to wait a week for the next appointment, but I had to make sure she knew that if she was feeling as crazy as I did there were other options.

To say I received incredible medical care would be an understatement. I was also the patient that made a name for her self in the hospital—I made friends with everyone. So when my best friend called me with an all too familiar situation my first instinct was to get her to “my people”. I made a phone call to one of my nurses and explained the situation. I sang the hospital’s praises, and then bluntly said that I knew we could figure out a better option for my friend. The nurse gave me a number to call, a specific person to talk to, and the right names to drop.  My friend made the phone call, followed my nurse’s instructions, and suddenly had an appointment for 8:30 the next morning.

Why did I have to make a phone call for my friend’s health to be handled in a serious, timely manner?

I understand that much of life is about who you know, but is this really true when it comes to our health? When I was begging hospitals all over the country to treat me with radiation, after my own hospital turned me away for being too high-risk, the only reason I found a place that would take me was because of a phone call made on my behalf. When I called on my own I heard for the hundredth time that I didn’t qualify. I happened to be very close to one of the lawyers for this particular hospital and when she initiated a call, acting as my advocate as she talked to their head doctor, we almost immediately heard a ‘yes.’ I was able to receive the treatment I needed because of who I knew, just like how my friend was made a priority because of who she knew.

But what about all of the people who don’t know someone? Who informs patients of what’s available to them? Who ensures that each patient gets the highest standard of treatment they deserve?

Sadly, there seems to be a lack of resources to answer these questions. I have been treated at the best hospitals—but at times, even under fantastic care, I found a difference in what I knew was available for me and what actually was available for me. So who spoke on my behalf the majority of the time? I did.

Cancer was the first time in my life where I had to be an advocate for myself. Maybe it’s pathetic that it took a threat to my life to learn to speak up, but regardless it’s a lesson I will never forget. I pray that you learn from my experience before finding yourself in a similar one. I went from a girl who accepted the answers she was fed to a woman who demanded the ones she wanted. From day one I saw that no one else was going to do it for me, so it was either take the wheel or spin out of control. It didn’t take courage. It didn’t take status. All it took was opening my mouth.

If there is something troubling you about your health, confront it. If you don’t think your chemo nurse is giving you the care you need, ask for a new one. If you’re not getting answers, demand them. Hospitals are full of loving people who are usually willing to meet your needs—you just have to express them. You can’t assume that others will advocate for you and you don’t have to settle on answer A without seeking B, C, and D.

Speak up. Be your own advocate. You are in control of your own health and life.

https://reimagine.me/magazine/opinion/be-your-own-advocate.html

high-low, high-low, doo-doo-da-doo-doo-doo

This week my bandages came off for the last time. I hope that some of the weight from the last 19 months go away with them. I know I have ??? years of hormone therapy and check ups ahead, but the surgery I had in September was the last part of my in hospital treatment plan that was created over a year an a half ago. It's finally time to experience life after treatment. Swallowing a pill is all that hormone therapy asks of me and thousands of people do the exact same action daily with vitamins or tylenol. I only have to do something lots of people do. I believe that means I'm only required to do something completely normal.  A life without looming surgeries or daily trips to the hospital. THAT SOUNDS TOO DAMN GOOD.
So I reflect. To look at where I was and where I am. As a reminder of why every day I wake up healthy and happy is a day to give thanks. And to keep a little fear in me so I do everything in my power to prevent reoccurrence.

Cancer lows and cancer highs through a little chatting and a lot of selfies.

May 2013

Low: Diagnosis, fondling by dozens of strangers, 

chemo begins. 

High: NT girls hike the Grand Canyon rim to rim and rep "Love Conquers All" as they do it.

June 2013

Low: Signature mane falls out. Nothing is private about my body anymore/detachment to cope.

High: I make bald work for me.

July 2013

Low: Emotions are officially out of control/hormones, hormones everywhere .

High: Round 1 of chemo ends and we celebrate Christmas in July. 

August 2013

Low: Unable to name reasons to keep fighting, Anna leaves.

High: Shipped off to NYC and CA in hopes of refueling/Cymbalta'd up as an attempt to balance out.

September 2013

Low: All 20 nails are officially gone and replaced with numb toes and useless fingers. Mastectomy talk begins.

High: Theme-o is born & life does a 180.

October 2013

Low: Physically/mentally at weakest, on bedrest, quit my job.

High: FINISHED CHEMO, Colin Meyer enters life.

November 2013

Low: Double mastectomy + axillary dissection, body is unrecognizable.

High: Clear post-op path report!!!

December 2013

Low: How is this feminine? Human? Recovery is hell.

High: Healthy enough for Christmas in Cali

January 2014

 Low: Radiation drama, begging hospitals all over the country to treat me before CDH agrees. Scans/appointments/all hands and eyes on my body resume.

High: 20 doctor less days.

February 2014

Low: Living at CDH

High: Weekend in Massachusettes + a comical symptom. Lymphedema/baby hand brings joy to all who see it and Anna is a stud at her first NESCACs.

March 2014

 Low: Radiation/spending every day at the hospital drains spirit and body, once again struggling to find the desire to live.

High: Finally a hospital gown I can work with

April 2014

Low: Liquids only, gooey/fried skin. 

High: Healing begins.

May 2014

Low: Starting hormone therapy makes me nauseous and emo, "was fighting to stay alive worth it?"

High: Post radiation party.

June 2014

Low: Goodbye to the 19 biggest reasons that made hanging on worth it

High: Justin Timberlake circa 1999 is alive and well.

July 2014

Low: Test results concern my doctor and heart/mind decide they want to start processing the past year while I'm trying to Hakuna Matata around paradise.

 High: Central America because I earned it.

August 2014

Low: Leaving everyone who took care of me and constantly provided love to process and start over on my own.

High: Put my time with cancer to use with Reimagine, finally thankful to be alive, fresh start.

September 2014

Low: More surgery/resume patient life.

High: Work with cancer patients/survivors/caregivers to improve the cancer experience. 

October 2014

 Low: A month of gauze and nipple guards. Leg incision reopens. My body once again is more science experiment than human. 

High: Active treatment ends and it's all preventative treatment from here out!!!

November 2014

Low: What to vegans eat on Thanksgiving?

High: Final bandages are removed and I can claim MY new and HEALED body. I want to be more modest again and private with it, treating my body as the sacred masterpiece that it is. I'm proud of what it carried me through and am enjoying the chance to get to know it and celebrate it.  

"...and the scars that mark my body, they're silver and gold."