Monday, March 31, 2014

A friend first, coworker second

For those of you who do not know me, I am one of Kayla’s friends and a coworker at Baker Demonstration School.  I got to know Kayla through swimming at school, and then I couldn’t get rid of her.  I struggled with what to write, because there is a lot to say so here is a tidbit.

After the shocking news that she had cancer, I offered to set up a way for the Baker community to help Kayla and her family during chemo. My idea was, who has the energy to make a meal on a daily basis (not me)?  Therefore, who wants to make a meal after you have been pumped full of chemo?   After nagging Kayla, about what foods she could eat and how to get the food to her, I finally had all the info I needed to start Lots of Helping Hands.   Although, it was a bit of a pain to get it going (thanks Becky), I LOVED that site.  I loved it because I got to see all these generous, loving, caring people that are a part of Baker.  New people to our school community offered to make meals.  They barely knew Kayla, and they brought in delicious meals, and were not upset when it took months (Kayla’s fault) to get back their cookware.  At the end of chemo I merged site with a family from Kayla's class.

Ok here comes a really weird and other side of being a close friend and co-worker of Kayla’s during cancer.  Everyone wanted to know how Kayla was doing all the time.  I was happy to be the person that fielded the questions (and still do), but I struggled with what to say.  Do I tell the truth?  Do I tell a partial truth?  Do I try and make it light and tell a stupid joke? It is, and was, usually a mixture.  I wanted to respect Kayla’s privacy, but she was so open to everyone during the process.  I didn’t want to share things that were told just between friends, but as many of you know Kayla is a friend to many.  At times I struggled to find the right words.  Hopefully I did right by you Kayla.

Ok the next part of this blog is something that I would talk about with Kayla to find the silver lining in all this crapiness.  It was called:  The Perks of Being a Cancer Patient.  This edition is called: The Perks of Being a Cancer Patient Friend and Co-Worker.
  • I got to dress in theme once a week in great outfits.  LOVED IT.     
  • I got to leave work and take a limo ride with Kayla and her dad.  I may or may not have cried…Daughters don’t get many moments like that with their dads.
  • I almost pulled off an epic surprise for Kayla’s last day of chemo. 
  • I did get to meet the guy who is Tommy the Hawk… And now Tommy (we are on a first name basis) knows who Kayla is! 
  • I scored a couple dates with the guy who got Tommy and WGN to come to our school. 
  • I went to California and met the Cali family.  To know Kayla, you need to know the California crew. 
  • On that note, we opted for a convertible because life is just a little bit better when you’re in a convertible. 
  • I got to go to a Ducks game for free. 
  • Ran my first 5K.  If Kayla can run a 5K in chemo then I can do it healthy.
  • Watching the roast of James Franco multiple times.
  • Sleepovers at the Petersen’s.
  • An early morning walk to the beach before school. 
  • My present from Kayla on her last day of chemo. 





Saturday, March 29, 2014

A mom's point of view

When Kayla told me she found a lump, I didn't worry. It runs in the family, I had it and it turned out to be harmless. Of course she didn't mention all her other symptoms so I was stunned when the news was bad. Stage two, how could that be, she's only 24! I started to worry because neither my parents survived cancer, nor had (more recently) my sister in law. When we got the news that her body scan was clear, I began to relax and feel good about her getting over this. We were fortunate to be able to pack up our place in Flagstaff in a day, clean it the next, and move back to Illinois the following day. We were immediately blessed with a place to live thanks to Lisa's connections to the Skinner's. Living on a beautiful golf course was nice but ironic since Tom can't golf and I have no interest it. The loop around it became a peaceful opportunity to jog, walk with Tom, or coax Kayla to walk a bit while feeling like crap from chemo. There is so much more to say but I am going to break it into two categories and just mention the highlights or low-points.
The Bad- Chemo. There is nothing positive about chemo except for the fact that it kills cancer. It was awful seeing your daughter throw up and feel nauseous ALL THE TIME and not be able to do something about it. It was horrible to see her turn 25 and be completely BALD. Everyone said she looked so beautiful still. That's not what I saw, I saw my daughter look like the sick person she really was, and there was nothing I could do about it. Devastating is seeing a nurse come in wearing something close to a hazmat suit, inject your daughter with red poison, and then know that her body fluids are toxic to anyone for the next few days. Helpless is knowing that your daughter is in the operating room for the next 4 hours and she will come out missing body parts that could have nourished her (maybe impossible to have) future children. Dreadful is seeing her skin after so many sessions of radiation that have burned, spotted, cracked, and caused oozing wounds to her healthy skin and scars.
The Good- The outpouring of love to Kayla and our family has been incredible! It started with the Peterson's and the Skinner's, Kayla's school, and her friends. It continued with the village of Downers Grove and many of our past swimmers and students to fundraise so that Kayla didn't have financial worries on top of everything else. After that, I saw the Underwater hockey community fundraise for Kayla too. Who else would get support from the Blackhawk's organization but Kayla.
I also saw the creativity of my daughter come out as Themo was launched and the continuous making of posters that cheered up her or made us laugh throughout her treatments.
I got to see my already close family become even closer.
Most impressive was the comfort of knowing that people all over the world were praying for Kayla. How could she not get better with all this support! I loved seeing her pink bracelet in Afghanistan or on Churchchill's hand.
Finally, Kayla was gotten a job from all this if she wants it. A new direction for her to give back to others. And isn't that what life is all about, giving to others?! We have been on the giving side and have been very blessed to be on the receiving side too. Thank you every one.

Friday, March 28, 2014

From Mrs Zastrow

“I don’t know any better way to say this, but its cancer”.

What we’d been most terrified of had come true. I felt my stomach bottom out and began to cry. How could something like cancer happen to someone like Kayla? As decent human beings, we’d never wish this disease on anyone, but for it to happen to one of the most joyous people I’ve met, was unfathomable. As I drove to work that day, I sobbed to Garth Brooks; nothing terrified me more than the thought of losing one of my best friends. Kayla encouraged me through tough times in my life, we’d been roommates, we’d walked the city of Chicago. Her life had just been turned upside down.  A woman who is young, active, and leads a healthy lifestyle is certainly not someone that anyone would expect to receive this diagnosis; but the reality is that cancer affects us all. 

Once I’d arrived at work, everyone could tell something was up. My boss pulled me aside to ask what was wrong. I choked out “its cancer” and she started to cry. She had recently lost her dog to cancer and, unfortunately, knew exactly how I felt. Throughout this process, I’ve come to find that everyone knows someone fighting the fight. We’re able to connect with strangers and know that they’ve felt this way before. Being able to share Kayla’s story with all of the people I speak to in a day has really helped the healing process. I think we’ve all learned to evaluate our lives a little differently, to appreciate more, thanks to Kayla. Cancer affects us all.

From hotel parties, to “Double Kaylas”, to a Blackhawks clad march down a chilly Evanston sidewalk, Kayla has epitomized making lemonade out of lemons. Who else would have invented “themo”? Kayla had to be strong for herself; but I think she knew that she had to be strong for the rest of us, too. As this chapter of her journey, our journey, comes to a close, I still have a hard time talking about it all without crying (but I cry at episodes of Modern Family, so make of that what you will). Finally, they are tears of joy. It’s truly amazing to recognize how far you’ve come, Kayla. In life, we have to believe that we are dealt the hands we’re given because we are strong enough and brave enough to overcome them. You’ve inspired all of us to be our best selves, to find joy everywhere, and taught us that love conquers all. Sometimes for the worse, but in this case I truly believe for the better, cancer affects us all.


I love you so much, thank you for being a bridesmaid, a survivor, and a friend. Let’s book that celebratory trip to Vegas.



Thursday, March 27, 2014

Rylee's Blog Post

     I've never written a blog post before but I guess Kayla having cancer has led to many new experiences.
     I guess I should start with my relationship with Kayla. Kayla is my big sister and my best friend. Technically we aren't related at all but maybe that's why we are so close because I chose her to be my sister, it wasn't forced upon me. We became so close when she moved out to California, when I was in seventh grade. It all started with "who's Chris":P After me pestering her for a couple months we started becoming better and better friends. From driving around in her car crying to Taylor Swift to taking naps with her and Christina I always had a good time with her. I guess I took advantage of the years she stayed with us and didn't truly appreciate spending time with her until she moved back to Chicago. I think her moving away made us closer because I appreciated her presence more.
     When I found out she had cancer, I cried every night because I didn't understand why it had to be her and I was so scared. Like why do the best people get cancer. When she came to visit us I didn't cry the whole time and tried to show her that I was indifferent about her having cancer. I wanted to be strong for her. It wasn't until her last night visiting that I had a break down. So I guess her having cancer started out really rough.
     When I went to visit Kayla in Chicago over the summer I started to understand the whole cancer thing. That was one of my favorite trips with Kayla because we just got to chill together and spend time talking and just relaxing. It was the first time I felt like someone needed me. I was so happy to be able to help her and when we went for walks and she would lean on me I felt important. Without her realizing it, Kayla leaning on me, helped to boost me up and helped me feel needed.
     After I left Chicago I went through the "why Kayla" phase. I don't know if you have ever loved somebody so much that you wish you could have all their pain but that's how I felt. I used to get the feeling of extreme anger and confusion. I don't understand how someone like Kayla, the epitome of kindness and awesomeness, could get cancer.... Like what a slap in the face. I still get this feeling sometimes because Kayla is the best and nicest and funniest person I have ever met. The period of not seeing Kayla really sucked. I missed her so much and wished I could be with her all the time. I love talking to her and I drop whatever I am doing when she calls me. I see her name pop up on my phone and I get super excited. That sounds pretty gay but it's true. I cherish the time I get to talk to her.
     Kayla visited a couple times after but the best time was when she came for Christmas. We went to the beach everyday and got to spend quality time together. The beach was like an escape. We got to go together and laugh and then go to big belly deli. The best beach day was when we went tandem surfing and we thought we popped her boob. I guess that day also sucked because my backpack got stolen but it getting stolen gave us something to do so it was fun I guess. Every time I go to the beach now I always think of my memories with Kayla.
     Okay so I guess a summary of this experience should come next. Well it has been good and bad. I mean it's obviously been bad my sister got cancer. But it has taught me a lot and that is where the good comes in. I've learned to cherish my time with people and to put other people before myself. I might not be good at doing those things but know I actually try to. Kayla and I have gotten closer and this might be from her getting cancer or it might just be from me growing up. I've become more sympathetic of other people because I know what it feels like to have extreme sadness and extreme happiness. And Kayla having cancer has taught me that I have to be there for her and allow her to rely on me if I want to be a true friend. I have to be a support system. So those are the things it taught me but there is other good from it too. From Kayla leaning on me and me being able to help her my self confidence went up. Because I know I can make a difference and that I am important to people.
     A lot of people helped me through this experience. I had numerous people to talk to. There were days that I would sit with Sabrina and cry or call my friend Alex and talk to him. My team really helped me and supported me. I remember hugging my friend Bri and crying for hours. I wouldn't have been able to do it without them. I wouldn't have been able to stay strong for Kayla because I would have bottled up my emotions and it would have eaten at me. I know my emotions can't compare to what Kayla feels but I like to think I might be able to relate. I had many people praying and their support meant a lot. I love updating people on my sister because it reminds me that she is getting better and that she will be okay. I still sometimes have break downs because I still don't understand why her and I don't think I will ever understand.
     Overall I just have grown a lot through this experience and learned a lot about myself. So now I just have the anticipation of Kayla coming to visit and my friends are getting annoyed because it is all I can talk about. I know that we are going to have so much fun together when she comes and I literally can't wait!


less than a week to go!

I HAVE LESS THAN A WEEK OF TREATMENT LEFT!!!! HOOOOOLLLLLEEEEEEE GUAC!! I am over the moon and past Uranus over this. I am in the middle of week 46 with cancer and it'll be so nice to say "I'm a cancer survivor" instead of "I have cancer". After next Wednesday I will have a whole month without a check up. A WHOLE MONTH. I might have a plastic surgery appt in there but who cares. The end is so so so so close!
My skin is suffering from radiation. My scar is goopy and peely, and my armpit is on fire. Everything is very raw and irritated. I have about 800 freckles on the left side of my chest and my throat is still causing me lots of pain. But what is a few more weeks of this to never have to shave my armpit again? Oh and to be rid of any lingering evil cells. Otherwise I'm just really tired. I take 2-4 hour naps every day (how was I going to teach during this?) and they are the kind of naps that make me wonder if someone knocked me unconscious with a bag of bricks. I sleep SO HEAVILY. Even when I fall asleep during treatment I sleep hard for just a few minutes. I am a tired girl.
I don't have too much reflecting to do at this point. I have to get across that finish line first. Head down and plow through.
"I hated every minute of training but I said, 'Don't quit. Suffer now and live the rest of your life as a champion.'"

Since treatment days are coming to an end, I thought it would be fun to hear about what this adventure has been like from some other perspectives. I opened up my blog to some guest writers. Nela got the ball rolling with post one and there should be others to follow. I wish I had had others update more along the way because truly this has not been my fight, but our fight. And when it's all over it'll be our victory. Thank you all for loving me.

 Snuck off to Indy for a weekend to watch NCAAs. So fun to see old friends, new friends, and celebrate good ol' swimming. Special thanks to The Gills for making sure this could happen and for taking such good care of me and Sloane! What a loving, fun, and just plain wonderful family.
And to Sloane! For escorting me to and from and all over Indy! 
Our time together is so precious to me.

^Illinois' newest national champion- Sam Gill. 
Who knew that all it takes to achieve your dreams is wearing boxers that you stole from your friend in 8th grade?

Laurel Heath made me a bomb tie dye gown to wear during treatment :))))))

P&me



:)

Wednesday, March 26, 2014

The Best Friend and Their Journey Together :The Nela Diary

I'm sitting here trying to remember and think about what I should share with all of you about my journey alongside Kayla in the past year. It's funny looking back because Kayla and I haven't been friends for decades like most best friends have. We've actually really only known each other a handful of years. It was a couple of years ago that we started hanging out more regularly and discovered that we are both equally as awesome and into the same types of things. It was honestly laugh at first sight(so cheesy, i know).
There are very few people that I identify myself with and find a sense of home in, and Kayla surpasses that. I can't find the right words to describe what she means to me. The only way that I can really describe it is a feeling that I get when I hear her name or when I see a snap chat from her. It's a feeling of pure joy and love. Kayla is the type of person who tells you what she really thinks, the person who will laugh with you about the dumbest little joke until neither of you can breathe anymore, and she's the type of person who sends me a McDonalds gift card along with a french fry holder for the car for Valentine's Day because she knows there is nothing else I would do on Valentine's day than sit in my car and eat french fries. Her thoughtfulness, her quirks, and her "do whatever makes you happy" outlook on life are only three of the countless reasons that I am so blessed to have her in my life.

I still remember surprising her with a box of Lou Malnati's the evening before she was going to get her test results. I knew that she was scared, and I knew that even though she said she'd rather be alone, there was no way in hell I'd allow that. Like a lot of things, we talk about everything in a lighter way. We turned around to the positive and made little jokes about fake boobs and going to the bars with a jar saying tips for tits, because neither one of us wanted to face the reality of what could be. It was a very difficult year for a lot of people who know Kayla. She doesn't know this, but I cried a lot. Even though I stayed positive the whole time, I would sometimes breakdown to my brothers or my parents. I always thought, "How could something like this happen to a good person like Kayla?" I started thinking about a speaker at a leadership conference that I went to a few years back. She suffered from a terrible tragedy, one that I don't think I would ever recover from, and she then said that she spent so much time saying "Why would god do this to me?" and she decided to stop and think "Why would god do this FOR me?" She saw it as something that she had to overcome and become stronger from in the process. It amazed me and I started applying what i heard from her to every obstacle in my life including this one. Kayla and I have changed so much in the past year since she got breast cancer(and kicked it's @$$!!).  I have always tried to be there as much as I can, and she has always been there for me. A lot of the time, it felt like Kayla was helping me rather than the other way around.

I've seen Kayla from the beginning until now and I've seen her through her lowest lows and her highest highs. Never in my life could I have imagined anyone to be so positive about this experience and have such an amazing outlook. One day when she was really sad, she immediately took out a notebook to start writing about the "100 reasons I'm thankful to have cancer." This alone shows you the incredible strength and assets of this amazing woman. We picked up a few quotes from some of the most underrated movies that helped both of us see the great picture. One of our favorites, "F*ck Everyone!" from Bachelorette. The more and more we said it, the more we started to believe it. We looked past other people's judgments and opinions and we focused on the positive. If someone was a jerk to me, she'd say it. If someone was a jerk to her, I'd say it and send a telepathic punch with it. We've had nights that would be so crazy and random that it would only happen to us. She is the person I send snapchats of my double chin face to, and stand in the front row of our favorite 90's bands and fantasize about becoming best friends with them (Matt <3), and tell my deepest, darkest (and funniest) secrets to. I've learned from her and from the amazing support group that she had about the ability of people and how people's hearts are so much larger than I could have ever imagined. She has taught me more in the last year than I have in five, and my life has been exponentially better since she came into my life.

I love you so much Kayla. Thank you for blessing my life with every part of your soul and for showing me so much more in life.

XOXO

Your Bestie,

Katy Perry





P.s. F*ck Dave.


Tuesday, March 11, 2014

Proton Therapy

I met with my dosimetrist today. To give you a quick idea of who that is, I yoinked something from the internet:
It is the medical dosimetrist’s job to ensure that radiation treatment does the most good with the least harm to the patient.
When a cancer patient is prescribed radiation therapy, a medical dosimetrist determines exactly how to deliver the prescribed radiation dose.
The medical dosimetrist first employs a three-dimensional computer model to calculate exactly where and how to distribute the radiation. To minimize damage to surrounding tissues, the medical dosimetrist may decide to use beam modification devices to better target the radiation. 
Before the patient receives treatment, the medical dosimetrist runs computer simulations and makes necessary adaptations to make sure the plan will work as designed. Then the medical dosimetrist supervises the radiation therapist in implementing the treatment plan. Radiation treatment can require one dose or several treatments scheduled over days or weeks.
So with her, we looked at the model of my body created from the CT scan. She drew in the organs in the areas being radiated so we could see where they fell in the treatment field and how much radiation each was receiving. She should us what it would look like if I had been treated with standard radiation using photons and what it looks like with the treatment I am receiving with protons. I took a picture of the screen do give you guys an idea. The left breast is what is receiving the majority of the treatment. The organ receiving radiation as a results of this is some of my left lung. With traditional radiation, my heart and more of my lung would be receiving radiation as well. My heart appears to be completely protected because of proton therapy. This is HUGE for my longterm health, especially considering one of my chemo meds can cause heart problems. My auxiliary nodes are also receiving a great dose along with the nodes in my neck. My esophagus is getting radiation because of the treatment going to my neck nodes. So far, this is posing the greatest problem but thankfully this should only be short-term damage with no lasting side effects. Right now I can only have liquid foods. Swallowing feels like razor blades are in my throat. The pain has started crawling into my ears which are now starting to hurt. When it is really bad my headache gets worse and the only relief is sleep. Broth feels pretty good, if only there was a way I could get it all down without having to swallow! I'm meeting with my doctor shortly and am hoping for some kind of relief from this. When I have spoken to other cancer patients who have had radiation to the throat area it seems like this is the normal and does go away a few weeks after treatment. I am counting down the days. 18 more secessions to go..

I went to a new patient orientation with my parents and got to learn more about the proton center and meet some patients. I really like the community this place creates. They call you family there and they mean it. I will be meeting with the media person from the hospital this week to learn how to be a patient advocate for proton therapy. There is a huge gap in education on the importance of this kind of treatment which is why no insurance companies will pay for it and few radiologists even know of it or think to suggest it. Had it not been for my cousin Mandy and the team at MGH I would have never known the importance of radiation therapy and fighting to receive this kind of treatment. I hope to be able to share information on it with my doctors back at Evanston Hospital and more locations in the Chicagoland area. 

Other than the medical stuff I am trying to have some fun. My weekdays are quite lazy, full of resting and snoozing, walks with the pup, and finding little projects to do to pass time. Usually I rally for one day of fun on the weekend. I have been lucky enough to see my Nela quite often who is always guaranteed to make me laugh and have a good time. I got to see Sam and Peter and Ryan with one of my favorite bands on Friday and had a birthday dinner for Christina the night before.
It is quite an interesting time in my life. I'm trying to find relief now while remembering every moment of this for others. These tough times fuel my need to help others in similar situations when I am finally healthy enough to.






Wednesday, March 5, 2014

radiation

here are some pictures from a treatment room and me pretending to get radiation :)