how long is your long term?

"How long is your long term? A simple question with an answer that's difficult to embrace.

What are you willing to give up today in exchange for something better tomorrow? Next week? In ten years?

Your long term is not the sum of your short terms."

Awesome

http://melanietesta.com/2015/02/shirts-off-underwear-on-play-out-breast-cancer-and-gender-expectations-2/

hoppenings

i'll start you off with a little fun. before treatments/surgery i like to create a bucket list of fun things to do that will help me through the tough stuff. this time included puppies, the ocean, pizza, playing and time with those i love. prep fun
so this is gonna be one of those where i start talking and we'll find out where i go when i get there.

the day before surgery i was gifted a spa day at an Aveda salon called Lux in fullerton. this is the place that dreams are made of. the massage was not of this planet and my hair has fun teal and purple streaks in it. thank you thank you thank you jordan :)
the night before surgery i had a big group of friends over for a wig themed pizza thursday- lots of good eating, games and just time with the really, really good friends that my life is full of. at one point i was standing around in the kitchen with a friend and he just looked at me, looked around us, and said "this is a good life, kayla." those words went straight to my heart. i feel like i do a decent job of appreciating the people in my life and the time we share, but sometimes i need to be reminded of that magic. another person made a comment about what a motley crew we are- 20-30 of us, some young, some old, some quiet, some crazy, no one really having a tie to more than one person there, but still all these people coming together to love on me. and eat pizza. this is a good life.

my surgery had a wig theme so at 6 am, me, my father, my roomies, and my friends in wigs strolled into Hoag Hospital. i was pretty exhausted and looking forward to anesthesia so waiting for go time felt like forever. not to sound like too much of a downer- but 2015 has been tiring. not really bad i guess, but tiring. the thought of a couple of days unconscious has sounded pretty great ever since surgery was scheduled. i've needed a break from myself even.
my dad and i had some beautiful little moments in my room before the doctors came. he commented on the community i'm surrounded with here and how much he loves to see it. we talked about our new favorite question, "what would you do if you knew that everything was going to be ok?" and my father ended it with saying God is not in the business of "ok" but things much greater. ultimately he reminded me that, as always in my life, one day we will look on these moments and see that beautiful things grew from them. maybe i won't see them as soon as i'd like to, but i know that i will.

normally i get very emotional with my pre op goodbyes, but my surgeon/oncologist was wearing a pink wig and my anesthesiologist was dance-pushing me down the hall to the OR in a green wig. i fell asleep laughing on my way to surgery. this is a good life.

a friend commented on my doctors saying that i seem to connect with the most wonderful people. i don't know if it's a "you get what you give" kind of deal (which another friend told me is a real thing because "otherwise there wouldn't be a super cool 90s jam about it") or what, but boy is she right. these two doctors were particularly exceptional. i wasn't their first surgery of the day and i wasn't their last either. the procedure was routine and simple. nothing special in room 2. but there we were laughing with colorful hair while i got prepped for surgery. i wasn't procedure #2- to them i was kayla and someone worth caring about and worth playing along with. i've heard hospital horror stories and desensitized doctors. the medical care i've received since day one has been perfect for me and only seems to get better. they've always accepted Kayla- the big love, big smiles, and big crowds. so friday morning, to throwback to Honey Skinner, everyone got the message to "get with the joy."
i like hearing about nurses laughing and people smiling because of my entourage. i love that gifts of love and joy my friends share with dozens, by showing up to support me. a ripple effect. this is a good life.

they took out the bad and kept the good. post op brought some more shenanigans- my docs put a wig on me while i slept in the recovery room, occasionally talking about harry potter bugs and how sad i felt for my cold feet. a very classic kayla wake up from anesthesia.

pathology reports will come in sometime this week and i'll see my oncologist next week for a post op check up and to talk about what's next. my dad reminded me how much of my stress and worries come from thinking about "what's next" and all of these unknowns. he said today has ten pounds of problems and i was given the strength to carry those ten. the bigger struggles come when i start to take on tomorrow's ten in addition to today's. my post op goal was to make a conscious effort to practice present thinking and stay focused on today. what 3 things do i have to think about today? unless an emergency happens, a few things today are enough, the others can wait till tomorrow or the next day. it's only been a day or two, but i see the positive impact of staying present already. i think health crises (among other bumps in life) cause our minds to wander so far into the future. i think of all of the times cancer has pushed my head into places that are months, years ahead of me. it's a weird limbo- knowing we don't have all the time we think we have but trying to stay in the now. making decisions for a future i don't know i have feels so much heavier than "what's one goal i can accomplish today?" mention of my post op appt really took me on a tangent there, but i think what i'm trying to say is resting, a little time outside and writing some letters were enough for today. i know you all have a lot of questions and wonderings, so do i, but i hope you guys can help me stay focused on today-that's what feels good for now.

my other little stand out moment happened when my dad was about to fly back to chicago. he got in bed next to me and was just lying next to me, holding me and telling me how much he loves me. it was one of those rare, precious moments where you can actually feel someone's love leave their body and come into your own. hug your loved ones-always share your love. when love is tangible, ahh. i am loved. this is a good life.

i am appreciating the clarity that has come with my life coming to halt. simple living has simple needs and simple dreams. i'm not sure of the source of the refueling that always comes with times like these for me, but i know it's coming. i'm looking forward to welcome whatever comes from this experience (but not too much(staying present is hard)).

thank you for all of the love and support i've been showered with and the patience with the process too. i love the ways my roommates are caring for me and keeping me safe. i love the ways that my family shares love. i love the texts and calls. and i LOVE doctors in drag.

"this is a good life, kayla." the more i see it and say it the more i remember it and feel it. "a good life" is a fun place to rest my head while i heal. slowing down is nice. i'm also kinda hopped up on pain meds so my apologies for bouncing around or not really having much to share- feeling thankful for auto correct <3

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