New Tattoos!!

Sup. Life is finally about to settle into a routine once again and this brings me great peace. Times of limbo and funny and frustrating. So before I begin on how radiation prep has gone, I want to apologize to anyone who has felt snubbed recently because of my lack of contact. The past two months of recovery time from my surgery left me with nothing but time to begin to reflect on the past 9 months. I could not have gotten to where I am today without all of your love and support and I will not be able to finish this journey without you all. I'll be the first to admit that this experience has been what it was because I have never walked alone. I am forever thankful for this and owe my life. That being said, the time came/has come for me to be alone, to find some peace in my heart and head from all of this. Processing is important that it has been something I have needed to do on my own or with help that I seek out. Having loads of people offering to help with everything before was great but this is a part that I have really taken full control of and need to. I appreciate the space that has been given to me to do so and I hope no one has taken it personally.
A huge part of sorting through all of this has been help from the survivors that fought before me. There is an unexplainable comfort that comes from talking with someone who has faced a boulder similar to mine. Someone like Amber for example, has helped me prepare for each phase of treatment that was ahead and eased my mind on many things. I like to feel prepared going into situations and I have her to thank for this. I had Susie and Katie to help me get ready for surgery along with many other women that were eager to not only share their experience but also what the final outcome looks like. I have been blessed with examples from Stacy, Janine, and Karrie on how life will go on again after all of this, that there are normal days ahead. Time with others who have fought cancer have been sources of strength through my fight and peace for the future. One particular person, Ryan, has been one of my best examples yet. Another youngster like myself, Ryan kicked cancers ass, while raising an adorable little nugget, and has already returned to life as a badass fire fighter. He has always made himself available to talk to the strange stranger that I am and proved to motivate me on many days. Talk about someone who reminds you that you too can get out of bed today. Ryan, you have shaped my experience more than you probably know. All of these lovely people have. All of you lovely people have. Thank you. This is the difference between what leaves some people in black holes and others as warriors. Or functioning members of society after all is said and done at the very least.
This has become a tangent, but if you have a chance to talk with someone who has faced something life threatening, you should take it. There's a lot to learn there. Hearing about anyone's struggles and how they dealt with them is pretty powerful actually. We all face our own battles and demons and we can all help each other through them.
More on this tangent but it's worth sharing.. last bit.. promise. I was recently given the gift of hearing how a man reacted to getting the news that his chemo treatment had not worked and the cancer was aggressive, leaving him with just weeks to live. Without any fear in his voice, he shared how he believed that everything was going to be ok, that this was ok. For he had been blessed with raising two angels that had grown into young women that would make any father proud. And he had spent 21 happily married years with his best friend. He said he had owed much of his life to his wife. He had married her not because he was beautiful or could make him laugh, but because she gave him the gift of a "for worse" relationship. And ultimately, that is what we need in life. It's so easy to find someone to have fun with, to go dancing with, who will be there for every smile and laugh. Sharing your time with someone who will stick around for the good times, for the "for better" is easy. He said what we should look for is someone who will be there for the "for worse". We all face these times in life whether it be cancer, death, financial woes, job stress, whatever it may be. There's great value in those who will stand by you through these times. Find a "for worse" and keep them near. I think this is great advice for my age group, when most spend so much time obsessing over all different kinds of relationships. I'm sure this will touch the hearts of all ages though. It's something I plan to hang on to.
Just more comfort and advice for the road ahead. And while I don't plan on dying anytime soon, being able to reflect on my life journey and find inspiration for what's to come is where my head is currently at. Mostly because I don't want this time to have been a waste. For any of us! Which brings me to my next phase of treatment: radiation. I have 6 weeks of radiation starting in about a week and I plan on using that as a productive time out. I'm lucky enough to have this time to sort through and figure some things out. How can I use the cancer gift to make a positive impact? We shall find out. I've looked into some classes, organizations, and other things for this time. Hopefully big things are ahead!
I had my prep day for radiation today. I stumbled into the proton center around 8am, got into my lovely gown (btw Laurel I am still waiting for my tie dye gown..), took a couple necessary snapchats of me in it, and met some members of my radiation team. I have Rachel and Rachel as my techs (I think?) manning the machine. Today they made a mold of my body that I will be in during every treatment. I laid down on a styrofoam box and they cut away at it until my body fit inside. Then that base was placed in a plastic bag full of chemicals that bubbled and heated up as time went on. I went into this, laying in a very specific position of my chin up (so lymph nodes can be accessed), body to my right side (so left breast and side can be radiated), and my arm in a sassy hip pose (access to where my lymph nodes were). The bag hardened around me and in no time I was cocooned in a warm  mold of my body. Combine that with the hum of a CT scan and I fell into a deep sleep while little lasers danced around me taking measurements. Sadly, every treatment will not be like this. Thank goodness hospitals have heated blankets, because I plan on recreating this as closely as possible. So this is the mold that I will be in every day for 6 weeks, to hold me in place during radiation. It will last under 2 hours. Receiving proton therapy will allow for more precise radiation and spare as much healthy tissue as possible, and keep my heart and lungs from getting much radiation if any. I was apprehensive about this treatment at first, mostly because I was tired of waiting for it to begin and was happy to just get going with traditional radiation. After today I see the importance in the treatment I am receiving. Meeting my team made me feel great about it all to. So far, all is awesome!

This is what it was like: https://www.youtube.com/watch?v=u0f7_VWi4d8

I also got 5 little tattoos today. These are the spots that will help guide the radiologists where the beams should hit. I will get radiation on my neck, shoulder, and chest areas. They are not quite up to Mr. Owen's level of work but they will have to do.

Today left me pooped but in a good spot mentally. I'm ready to start and I'm excited to work with everyone at the proton center. And not just because they gave me a cool name badge with one of those snap back string thingys. So that's where I'm at now. Ready for radiation and hoping to be of use to others.
Stay warm! And enjoy that sunshine for the rest of us west coasters!


Oh and please send me some songs/playlist ideas! I need tunes for my treatment time since I can't have company!

Remember how bald I used to be?? Ha! Woah!!

All great men do.

Rock mustaches, that is. And I am off to go see one of the greatest, Chicago's best: Coach Q. I won a contest on Instagram (who can resist a bald girl in a prom dress with pink fingers gripping the crap out of THE Cup??) and get to spend the evening with the Hawks, some friends, and the beautiful Joel Quenneville. Luckily for my health, it's also the push I needed to get back to the doctors and continue playing the cancer game (not without sucking it dry of perks, of course). My head is hanging a little low, life outside of the hospital was great!! But it's important to me to somehow get it through my head that I have just a little bit longer to go and then I can put it all… behind me? I doubt it. Maybe just not as high up there as it is right now though. For now, I'm running out of days before radiation begins and will just have to enjoy them the best I can. My technique of plowing through treatment with my eyes closed got me through everything quickly and slightly easier I think and I'm hoping I can do that through the 6 weeks of radiation. The problem with this amazing month out of the hospital has been all the time for reflection I was given. I spent a lot of time in my head and heart, and things that had been hiding surfaced. I didn't know that all these emotions were in there. It scares me a little when I think of how I am just beginning to process my experience and have already shed as many tears as I have! Little fears pop up. I have level emotions and never get too high or too low, but recovery has left me pretty inconsistent emotionally. But it all has to come out sometime I suppose.. I think exhaustion is the worst of it. This process is draining and 9 months can feel like 9 years. Giving up isn't an option but I get why people do. But, we shall continue to fight like hell here. Find smiles and it'll all be a part of the past soon enough!

I'm ready for treatment to end because I am SO READY to spend less time on me. I think spending time alone or with yourself as the main focus can put you in a bad place sometimes. I'm always happier when I am about others. This is what makes me nervous about not working and now spending each day at the hospital. It sounds like a lot of Kayla focus. To fight that, I am starting the exploration on the next phase of my life. After being a part of the cancer world, I cannot imagine ever leaving it. There are so many things I enjoy doing, but nothing has been more precious than the time I spent with the people involved in this community. From the doctors and nurses who played massive roles to the woman who I spent 10 minutes with getting fit for my lymphedema sleeve. Everyone who has walked my path with me has been such a pleasure to spend time with and made this experience more positive. I'm thrilled to seek out a role that fits me. I cannot wait to give back. Just think how different cancer would be if everyone had the love and support and the experience that I have had. It hasn't been all smiles but boy do I hate thinking about what cancer must be like for some others. Thank you to everyone who made my journey the way it has been. I hope I can walk with others on a similar path.

I don't really know why I started this post. I don't have any new news really. Just wanted to say some more thank yous I guess. Feeling like a hurting soldier makes me appreciate the faces and places that have kept me strong all long and I know will keep me smiling.
Today I found strength in a hot mama that was recently diagnosed. I was late to join her fight because of my own.. whatevers.. but now that I know and have the pleasure of getting a peek into her heart and personal experience I feel like I got a boost. There's something about remembering the other people going through a similar experience that makes you wanna keep fighting for them. I have to stay strong for them. We have to do this for each other because it'd been impossible alone. So I just wanna say thank you to all the people who fought before I did, the ones who are fighting with me, and the ones whose fight is to come. May we all be able to stand together and be there to pick each other up when needed. Or at the very least buy a beer for each other. I am so proud of you all and love you all so much. If you know someone else who has fought for their life (you do..), give them a hug for me today and let them know we love them. And thank them. They are keeping the rest of us alive and strong.
Enjoy your Tuesday…

look for this big cheesy during the hawks game tonight!

and watch the kroll show after!!

salt & sun!

I apologize for the delay in blog updates. The good news is it's because I was busy LIVING. Surgery went really well overall and I am happily living my life without a bra. After radiation I'll have all of the cosmetic parts of the surgery finished up and then that'll be that!

Recovery sucked and I cannot imagine ever having that surgery just for "fun" (ladies-that's for you. little boobies are ok too, enjoy how God made ya)

Fake boobs are pretty ok so far in my book!

Once I was up for it, I left the cave I was living in at my parents (cave in my opinion is a positive term btw, ultimate sleeping and resting set up) and went to Racine to relax by the lake with the Oneils and was fed amazing meal after amazing meal.

Then I headed east for a few days in NYC with two of my best friends. I caught a Rangers game at MSG and had the best burger of my LIFE (Trifecta burgers don't count, totally different level of goodness there).

From NYC I went out to California where I have been since mid December. My whole family came out here for the holidays. We had a really great time catching waves and soaking up rays here in Newport Beach. It ocean is probably the best therapy I have received so far. The sun has its own kind of magic, but there's something about getting in the water. Nothing else matters. And with the downs that have come with all the ups that 2013 brought, an empty head and a happy heart have meant a lot for me. Being fully present in what I'm doing and where I am is rare. I am always exactly where I am when I'm in the water. I hold those special moments in my heart.

I've been hiking and biking and just enjoying the chance to be active again. It's been a very long time since I've been able to play around and feel "sporty". I'm sort of getting into biking a lot… and by a lot I mean I've been watching lots of Lance Armstrong videos and interviews lately while I log (not many) miles on a stationary bike. It's something, right? Side note-- Lance is the man. I have a lot of respect for him, regardless of any mistakes he made. Also I do realize that I'm like a year late on all of the Lance stuff (the Oprah interview I've been watching was from jan 2013) so if he's done something scandalous since then maybe ignore everything I just said.. I have been swimming a little bit here and there too which is always a treat outside! I am still trying to be a little cautious about my arms and chest. Ocean swimming doesn't count! More than anything I have just been doing a lot of smiling. Don't get me wrong, I'm pretty stressed over this radiation pickle that I'll touch on next and just over cancer life in general, but I have been pretty darn happy. I went weeks without being around doctors and lived like a happy, normal, and at times quite dumb, 25 year old. 

But I am back to trying to take really good care of my body, get my strength back, eat lots of dark greens, etc. I'm ready to fight again. The break was great for my head and spirit but it's time to gear up for radiation. I hear it's a cake walk after chemo, once it starts. I've been in this waiting game since the beginning of December trying to figure it all out. I met with my radiologist in Evanston and he told me that my case was really controversial to treat for a couple of reasons and didn't feel comfortable treating me without the Mayo Clinic's consent, which happened a couple of weeks later. Basically I'm tricky for a few reasons:

-I was a stage 2 cancer based on my tumor size and had a clean scan post surgery which would mean no need to radiate

-the number of positive lymph nodes I had bumped me to a stage 3 for treatment and that means radiate regardless of post op results

-My age makes radiation risky. They don't like treating kids because they should be alive to see any potential long term side effects of radiation,  most adults that are radiated at like 40/50 aren't around to see them. Side effects can include secondary cancers or heart problems in my case because they are radiating my left side

-Not radiating runs the risk of any residual cancer cells going bananas in me and since I have no more breast tissue, the only places breast cancer can return are in the chest wall or bone, and well then I am screwed.

So from the get go I voted radiation. The Mayo Clinic agreed to radiating me but wanted to consider a special proton therapy kind of radiation for me first. It would be better for my heart and reduce the risk of secondary cancers. I don't really understand much about proton therapy because it contains a lot of medical mumbo jumbo and big words that I don't understand. I think it just has the ability to be more precise? My dad tried his best at explain it to me too and I tuned out almost immediately. My tolerance for medical talk has gone WAYYYYYY down. Here's a link if you care to make any sense of it..

http://www.cdhprotoncenter.com/what-proton.aspx

http://www2.mdanderson.org/cancerwise/2010/03/is-proton-therapy-right-for-you.html

The tricky thing about this therapy is the locations of these machines are few and far between. California (they won't take me because of my positive lymph nodes), bufu Illinois (aren't quite advanced enough), Indiana (no..), Minnesota (gosh no…), Houston, and Boston (will take me! and cousin is an oncologist here). There are a couple other locations that aren't worth mentioning but basically they are in a few big cities in the world.

So the best idea of a plan I can give you with right now is Boston will most likely where I will be getting radiation. This is all brand new news. I thought I could swing regular radiation out here after Loma Linda's proton center turned me down, but I guess I really have to consider the proton therapy more than I thought I did. I'll have a consult out there and see the turn around time. If it's long I am in favor of opting for regular radiation, because I'm tried of my life being so heavily about this and just want to get it over with. Regardless, radiation will be a 6 week long period, 5 days a week, for about an hour a day. And I fully plan on using those 6 weeks as a gift, to further myself in some way and hopefully others. I don't think I am doing as good of a job as I was before with having my cancer journey be a blessing, but I guess there's still hope for the big picture! I just want this experience to be positive for myself and OTHERS. I am praying that what that means will continue to be revealed to me. And in the meantime not kicking myself for the days that I have my tight fitting crabby pants on. I just get so tired of all of this sometimes. Gotta remember that this is just a small blip. It's all temporary and short term. So if you want some prayer requests, I'd ask that once again the best possible treatment plan is created for me in the best location for me. And that I make the best of whatever that ends up being! I will have to start by February so all of this will get going soon. Limbo periods are the worst, aren't they?

So it looks like my time in perfect, happy, sunny, lovely California is slowly coming to an end. It's been great. No better place to recover, get treatment, and wait out news. I am so thankful for my time here and the people that made it wonderful. My family, Tim, Ing and Katj and cool homies, the new friends I've made, the peninsula and all of the kooks that live on it, Mr. Mulroy, Sally and co (but really you're family too), the Fanticola family, baby Annie and I guess her mom.., both Balboa Candy locations employees, the Simos, the HC folks, Frog House bros dancing with their surfboards, and all the lovely people here who make me smile out on walks, bikes, hikes. I'll be back soon :)

(actually tho, ducks kings at dodger stadium and hawks series in ca in feb.. so don't get too sad)

And to everyone back in Illinois. I miss you guys a lot. Like, SO MUCH. You've probably heard that from me in mopey texts and whatnot. I can't wait to be back with my class. I love you all and owe everything to you guys. Still breathing and smiling because of my homies back east. Love, love, love, love you all.

Hope to see ya soon! (when it warms up)

Until then, toodles!