Monday, August 18, 2014

CF Community Interview - Sabrina Walker (Cyster)

In this interview you will read from Sabrina on what it was battling CANCER and having cystic fibrosis! Yes, you read that right Sabrina is truly a WARRIOR. Sabrina details what life was like growing up having cystic fibrosis and also winning the war against cancer.  

You will notice that Sabrina lives by a very positive attitude in his life! I believe that half the battle is your attitude toward anything in life and Sabrina exemplifies a wonderful attitude in all things she encounters.  

NAME: Sabrina Walker

AGE: 27


Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

I am one quarter Tlingit Indian and I go to the Indian Health Services Hospital in Alaska. The Cystic Fibrosis gene is not carried in the Native American/Alaska Native population, since I am only ¼ Tlingit I have enough Caucasian in me to carry the gene. I was diagnosed with Cystic Fibrosis when I was 4 years old, but it took months and months of testing and doctors to diagnose me. When I started Kindergarten, my parents soon realized how small I was compared to my classmates. It took so long to diagnose me because the Indian Health Services in Alaska had never had a patient with Cystic Fibrosis and they had never thought about testing me for this disease. I was then transferred to a doctor who suggested that I be tested for Cystic Fibrosis and my CF story begins.

I don’t remember life too much before being diagnosed, but I remember small snapshots of life after being diagnosed. I remember going to doctors appointments, I remember my first hospitalization and running from the doctor when he tried to give me an IV, I remember waking up and crying because my hand hurt and the nurse not doing anything about it (The IV infiltrated and I now have a scar on my hand from the medicine burning my hand), I remember my parents trying to hide my enzymes in apple sauce and I remember going to the nurse once a day to do nebulizer treatments and postural drainage.

I never realized I was different from any children until I got a little older.

Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)?

I was so young when I was diagnosed that not much changed for me. I still dreamed of being a princess and a veterinarian. I never thought that I was limited in what I could do and achieve because of CF. I still went to school and played outside like any other person my age. I did x-country running and track in Middle and High School as well as hockey cheerleading. My parents were excellent at helping/guided me with being compliant with my medicines and treatments. I had a routine and new nothing else.

 My parents always told me to never give up and pursue whatever I want in life. I still believe them!

What has been the biggest challenge for you dealing with cystic fibrosis?

The biggest challenge that I have dealt with in regards to Cystic Fibrosis is lung infections. It is so hard to go to work/school, take care of myself and be compliant with medicines and treatments, exercise and incorporate hobbies and friends. When I am sick I am physically exhausted and it’s hard for me to be motivated. I don’t enjoy missing work or school for Cystic Fibrosis, but after hospitalizations I leave feeling refreshed. I think it is hard for others to empathize with me when I am feeling sick because I look like a healthy 27 year old. I don’t enjoy that I am battling this disease and that my future is uncertain because of it.

I know you have had other health complications that are not just cystic fibrosis. What other battles have you battled?

When I was 18 I started to feel back pains in my lower back. I went to my Doctor and she felt that I had pulled a muscle from running. The pain never went away and eventually got worse, I started to get shooting pains down my legs and my right foot was losing feeling. After graduating from High School, I went back to the Doctor and was desperate for help. They ended up finding a tumor on my spine that was cancerous. I was diagnosed with non-hodgkins lymphoma. I did 4 months of CHOP-R chemotherapy and a month of radiation. Each chemo session was 3 days long every 3 weeks. I ended up with Pneumonia after my first chemo session because my body was so weak and I had no immune system. I was also allergic to one of the chemotherapy drugs so instead of it being a routine two hour intravenous session it had to administered very slowly over the course of 2 days with lots of Benadryl.  I have been in remission for 8 years!!

After defeating cancer, did your views on life change? Has it made it easier to focus on battling cystic fibrosis from overcoming cancer?

Yes, my views on life have definitely changed. I feel that I am beyond blessed and thankful to be alive. I learned to not dwell on the negative or let small downfalls consume me. This life is beautiful and I truly embrace each and every moment that I get to enjoy this beautiful planet.

After beating cancer I felt that I could fight any battle. I look back at when I was 18 years old and I think that I am one tough cookie because I was battling two diseases at the same time that could have both potentially taken my life away from me. I do go in for yearly scans and blood work to make sure that my body is free of cancer, but now my focus is to do all that I can for myself to outlive CF. I believe that exercise has helped to keep me alive. There is no better airway clearance for myself other than going for a run. I am so hopeful for a CF cure in my lifetime and I want to do all that I can to help make this dream a reality!!

Please share with us any triumphs you have accomplished because of cystic fibrosis?

I have run 7 half marathons, I have done Lost Lake (a 16 mile mountain run) twice, I have raised $22,000 for Cystic Fibrosis by running and fundraising.

I plan on completing a marathon and lost lake this year!

Were there things you wished your parents did differently as you grew up with cystic fibrosis  (Example: more freedom to be in charge of your treatment, speaking at doctor visits,  life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)?

No, my parents taught me to be compliant and have a routine, they let me be a child and go to school and play. They took me to doctors appointments and taught me to have a voice when it comes to my health. They taught me to be pro-active and play sports. I thought they did pretty well.

I assume you have seen a lot of changes in the early days of CF and where we are at now.  Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

When I was diagnosed with Cystic Fibrosis I was told that I wouldn’t live past the age of 8. The median life expectancy has drastically increased. When I was young we did postural drainage/chest percussion and now I have a vest that does the work for me. There are new antibiotics and amazing miracle drugs like Kalydeco. I am not on Kalydeco but I see that it has positively impacted so many people with CF. Enzymes and vitamins have remained the same.

I do remember being hospitalized when I was younger and I would play with the other CF kids in the hospital. Now it is very different and we know that our lung bacteria and infections can be passed back and forth.

I know a cure is in our future!!!

This question floats around a lot.  If you could be born without cystic fibrosis would you? What has cystic fibrosis taught you about life?

That is a hard question! There are many positive aspects that CF has taught me to deal with in this life. At, the same time it has caused a lot of pain and hurt. At this point in my life, I see myself living until my 80’s and raising a family. These possibilities may not be in store for me but I plan on fighting for that dream. With or without CF I am pursuing happiness! I believe that CF has created a Courageous Fighter (pun intended)J.

I think CF has humbled me. I will never take life, health, breathing or happiness for granted. I grew up with accountability, I needed to take care of myself in order to live. Life and Death was presented to me at 4 years old and from that point forward I learned to thrive. I want to be a warrior in this life and I do not want to give up.

I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF.  I want to know what you would tell a newly diagnosed parent to a CFer?

CF is hard for parents to cope with, they are learning about the challenges that their child will face and a new world of constant fear has been placed in their lives.

I would tell them that compliance and routine are important. These medicines and treatments are meant to help our bodies. I believe in the importance of exercise so I think some type of exercise should be implemented in so that their child’s lungs are worked everyday!

I would tell them that hope is in the future. Our goal is to fight CF and we can do this by being proactive with their child’s health needs. This is not a death sentence, and negative outlooks like that can’t be tolerated. Raise your child with optimism and dreams.

I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis.  As a CFer who is married, what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship? 

When I was in middle school I was scared to tell people about CF. I was hospitalized and no one knew what was going on other than I was missing a lot of school. I learned that being open about CF with significant others and even friends has created a lot of support and wonderful bonding experiences. Unfortunately, it can be a cruel world and I had peers who said I was seeking attention and when I was diagnosed with cancer I had people who had said that I made it up. Those people make us tough. I read this quote recently,

“In the end, some of your greatest pains become your greatest strengths.” – Unknown.  

If someone does not accept this aspect in your life, you’re far better without them. Good riddance J


What advice would you give anyone who is battling cystic fibrosis or cancer today?

My advice would be to appreciate and find the beauty in each moment of your life, do not take this life for granted. You are in charge of your own life, so dream big! CF & Cancer are bumps in the road, they create warriors, fighters, strength and compassion within the person that is experiencing the battle of CF or Cancer. Never give up and hold optimism in your heart. Take care of your spirit by doing things you enjoy. Exercise!

Is there anything else you would like to share with us when it comes to your battles with CF? 

To all the beautiful people battling CF!

“The most beautiful people we have known are those that have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” – Elizabeth Kubler Ros

John’s NOTES:

I don’t really know how to sum up this anymore by saying that Sabrina is truly a dedicated, strong, and inspirational to EVERYONE!!  I really love how Sabrina says you are in charge of your own life and dream big.  I don’t think people understand that.  There are way too many people who feel they were dealt a bad hand in the game of life that feel sorry for themselves.  It’s up to the individual to take charge and bulldoze through the tough times. 

It’s really great to see Sabrina so dedicated to her health and putting her commitment to running into her health plan.  We all can find a way to be more active in our life.  Sabrina says she needs to run to stay healthy and in the best shape possible for one day she can embrace that day when CF stands for cure found. 

I think the quote that Sabrina shares with us at the end tells it all.  “The most beautiful people we have known are those that have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” – Elizabeth Kubler Ros

I am just glad to call Sabrina my friend, my fellow CF WARRIOR, and one inspirational person!! Keep on running and inspiring EVERYONE!

Monday, August 11, 2014

Seven Year Wedding Anniversary

The lucky 7!! Where did these past 7 years of wedding bliss go? It’s crazy to think that 7 years have already come and gone but not without some fantastic memories that we have made.  I will always remember that day August 11, 2007.  It was a beautiful HOT day unlike what we are having today!

I felt like it was another ordinary day.  Some may ask why would you feel like it’s just another day? Well I guess when you are about to marry the woman you call your best friend, your soul mate, and life partner why would you have any nerves on that day? Honestly, I did have some nerves but it had nothing to do with making the best decision of my life in marrying Maria.  I just didn’t want to mess up any part of the ceremony.

I can say I actually did mess up during the ceremony. I don’t think anyone will ever recall this nor was it ever made a big deal during the ceremony as the preacher was a class act.  So my mess up was when Maria’s father walked her down the aisle and I was supposed to wait until the preacher said something about Maria’s father presenting her etc. I will be first to admit I forgot all about this as I was the groom who was crying his eyes out! I couldn’t help it! There is just something about marrying the woman of your dreams. I reached out shook my now father in law’s hand and gave him a hug.  On went the ceremony and no one said a single peep about it.

The only person who did say a word was Maria when we were at the wedding reception.  She told me you know you forgot to let my dad present me at the alter? I said oopps! She told me it’s OK, everything was PERFECT!! That is one reason why I LOVE my wife.  She just goes with the flow and is just a low key lady!

Even after seven years of marriage, I can say that we are definitely still enjoying being the couple we have been all the way back when we started dating.  Maria and I have been high school sweethearts dating way back in Sophomore year.  That now makes for almost 14 years of being together! That is almost half of our life we have been together.  I know it sounds like a really long time to be with someone that long but in all honesty every day, every week, every month, and every year go by so unbelievably fast.  

I can say that I married my best friend and my soul mate!  I blogged this same quote a year ago and still holds true……“It doesn’t matter where you go in life, what you do…….it’s who you have beside you.”  I truly could not imagine a day without you Maria. You have always been in my corner and have given me so much strength in life that no one else could have.  You have provided so much inspiration and a reason to never give up on our dreams.  I could not ask for anything more in life than to have you by my side.   I am proud to call you my best friend, my soul mate, my wife, and the mother to our miracle daughter.  

So here is to another year creating more memories.  


Thursday, August 7, 2014

Happy 30th Birthday Maria!!!

Today, it’s the end of a decade for you Maria! HAPPY 30th BIRTHDAY to my better half!

I have been lucky enough to be with you for well over a decade now.  Writing that sounds like it has been FOREVER but all I can say is the time has gone faster than I could imagine.  I am sure you feel the same as you decided to keep me in your life ;)

In the last decade, we have done basically everything together.  We graduated college together.  After college we were married.  We bought our first house.  We have went on some fun vacations and made some awesome memories.  Our journey to creating our family is one I don’t think either of us would have ever dreamed of.  Alayna made us a family and I know we couldn’t be happier with her in our life.   We sold our first house and moved to our dream home. Yep, in all honesty we could live in this house, forever!   

We have had some bumps in the road especially when it came time for us to have a family. But there is a saying that goes something like this “You were given this life because you were strong enough to handle it!” I have said it many times but you have shown me what it means to be that much more of a fighter. Though what seemed to be all monumental odds to climb never once did you say I am done fighting for what we both wanted and that was a family.  I don’t know what anyone else would have done in your/our situation but I can tell you you’re one hell of a determined fighter.  Your determination and never accepting a defeat is something I admire every day!

I can tell you, my life has been made easier because of you.  You are one of the most selfless individuals I know always putting others before your own needs.  You have continually shown how much you truly care for our daughter and me.  I cannot say enough how you motivate me to put my best foot forward every single day!  I look forward to the many more decades we will have celebrating birthdays, making more memories, and most of all being right next to you through it all!

Here is to more decades together!!

Happy birthday to my best friend, my wife, and my soul mate!!

Love you!