Tuesday, February 28, 2017

Rare

Today is Rare Disease Day and Brain Tumors are considered just that!  Wow! Rare! Hmmm... What do I think about that and the fact I got one??? Over the last seven years, I have had a lot of time to ponder the whys? I never allowed myself to wallow in the 'poor me' talk very long.  Instead, I chose to focus on the why nots? I accepted the facts I couldn't change.  I didn't argue with the statistics, I took Dory's advice & kept swimming.

So what about those why nots?  During my first few months of recovery, I heard from family, friends, Doctors, Nurses, Therapists and strangers... asking - but why you?  I quickly got sick of hearing those questions and began responding with why not me?

Guess what? I still don't have an answer to that question either!   It does however requires me to fully evaluate my circumstance, even today, and forces me to make a choice, be thankful or not?  I'd like to say I always choose Thankfulness, but I still find it tough sometimes to deal with my lingering deficits. It's hard to admit your shortcomings, real or unreal.  Things I see as roadblocks may seem trivial or silly to others, but to me they still matter.  I question so much of how this situation changed me, hoping it's mostly for the better,  but recognizing some is not.  I know I'm speaking in generalities, but I'm still not comfortable airing all my insecurities.

When all is said & done, if I've know you for a month or for years, I hope I have come across as someone who is Thankful that I have had this brain tumor experience.  I will never have the 'reason' that this happened, but throughout it all, I've been blessed more than I can say and I'm grateful for that.  I've discovered many truths throughout this.  Truths about God, people, love, healing, possibility and about myself.   I'm making lemonade from these lemons.  I'm turning my mess into my message.  I've been blessed by so many, I hope I've returned the favor & continue to do so.

So on this Rare Diseases Day, I'm going to embrace the fact I'm RARE and be glad with that.

Be Blessed

Friday, December 02, 2016

Water

Water is defined by Dictionary.com as a "transparent, odorless, tasteless liquid."  When you think of water, what sort of thoughts come to mind???

Within the last week, it has become a blessing.  Let me explain further... I got stomach flu over Thanksgiving break and it was no fun!  Even water was my enemy. Hours ticked by and as they did, I grew desperately thirsty.  I longed for small sips of cool and refreshing water. My lips began to crack and my tongue was dry and raw.  My mind was consumed with my thirst.  After hours had passed, I started with small sips and quickly moved to big gulps.  My mistake indeed, my body retaliated greatly.  Again, I started the waiting game, hoping I would feel better soon.  Another few hours passed and I again tried small sips, this time being more mindful of how quickly I was drinking the water.   I stayed with small sips for a few hours before I tried bigger sips. About 24 hours after it all started, I was finally able to hold some water down.  I can't just describe it as water. To me, it was cool and crisp,  it even had a sweet hint to it.  Okay, okay... am I crazy???

Water is tasteless, right?

This isn't the first time I have experienced this.  Over six and a half years ago when I was lying in the ICU recovering from brain surgery, I became severely dehydrated.  I remember desperately trying to swallow so I could finally have something to drink. I was overwhelmed with frustration, my body wasn't working, and no one could understand me.  Nurses gave me oral  swabs to add some moisture to my mouth until they could determine if I would gain back my swallowing ability or if they'd have to declare me NPO status and get a NG tube placed.  I'm not sure I will ever be able to forget the way my mouth felt. My lips were cracked & no matter how many times I tried to lick them, I never found relief.  My tongue was thick and rough as if it were covered in sand paper.  It felt swollen and fat, although I'm not sure it was.  At this time, my face was asymmetrical, I was black & blue and I had the crazy drugged look....we won't even mention my hair or my over active salvation glands. I was a mess!  Even after I had the NG tube then the PEG tube, I always had a longing for a cool drink of water. On the PEG tube, I was able to give myself free water with my liquid food to keep me hydrated.  When I was finally able to swallow, I had to start with a tiny amount (teaspoon) of thickened liquid. I then worked up to other beverages that provided me other stimulus to help aide me in swallowing.  Liquids with flavor, temperature (hot/cold), and texture were easier than water.  Without fail, 99% of the time, I'd choke on water.  About 9 months after I returned home, I remember waking up in the middle of the night.  I stood at my bathroom sink, thinking about water.  Usually, I would just put my mouth to the faucet & I'd let the cool water wash over my tongue, being careful not to let any stay in my mouth.  On this particular night, I decided to be a little daring.  I put a little water into a cup and tried to take a small sip.  I remember how hard I was concentrating.  I remember the cool water as it sloshed in my mouth. I was mindful of where it was in my mouth. I knew if I tried to swallow it without being ready, I would most certainly choke. Instead, I stood there with my head slightly faced down and I really enveloped the flavor of the water.  The longer it stayed in my mouth, the warmer it got.  It was sweet in flavor and it felt so refreshing.  I closed my eyes and relaxed my throat.  I visualized the water and hoped it would go down.  I swallowed.  I waited a few seconds, expecting a coughing fit.  Minutes passed and I was fine.  I tried again and again.  That first night, I managed to swallow water 5 times before I aspirated.  VICTORY!!! I was filled with emotions.  I was happy, overjoyed, hopeful, nervous, scared, apprehensive & thankful.  It took many more months & years to be able to drink a glass of water with ease. Actually, if I'm honest, I still am more cognizant when I am drinking water.  I probably will always be.  I just so very thankful I am able to swallow again.

Be Blessed.

Tuesday, October 11, 2016

Seasons

Happy Fall!
This is my favorite time of year. It's a great reminder of the changing seasons. The leaves turn to fantastic shades of yellow, orange, red, maroon. Everything has a slight frost on it in the mornings.  The kids head back to school. You have to dig out coats, boots, gloves & hats. The season has certainly changed and before we know it, there will be snow. Gasp!!!! But I've discovered their aren't just seasons in our weather, but also in life.  Life is full of transitions and sometimes we are ready for it and sometimes we have to just hang on for the ride.  I'm in a new season and am really enjoying it.  When the boys headed back to school this fall, I longed for something to do. I've toyed with the idea of going back to school, volunteering long term somewhere, getting a job, and much more, but I didn't know what I really wanted to (or felt like I could) do. My mind at times swirled with ideas and then raced with fears & anxiety.  Questions galore!!! One day I sent my oldest sister a text message asking her what job often turned over at the medical office she works in? Well it started a whole discussion which only encouraged more thinking. Drat! A few weeks after our conversation, she called me out of the blue with a proposition.  Her office needed someone to do some data entry for them and she wanted to know if I was interested.  I didn't have to think much because they were offering work with flexibility so that I could still be available for my boys. Basically work when they are in school. Win-Win. Another answer to prayer.  I'm in my second week and I'm really enjoying what I'm doing.  It's been such an encouragement to my spirit. It's begun to squash some of the fears I've had about myself. A blessing for sure. Thank you Lord!

Seasons... they come and go, may you be blessed in the one you've just had, the one you're in, and the one just around the corner.

Blessings.

Sunday, June 26, 2016

Summer Days



So it's been a couple months since my last blog... I did go see my Neurosurgeon and got the thumbs up! I did bring crazy brain treats too. Then fast forward a few weeks and it was the end of school for the year. I was busy running between Kindergarten performance, class picnics, teacher gifts and watching Miss Ashlynn the last few days of school. Lots of good memories.  So far we have filled the summer break with zoo trips, play dates, water gun & balloon fights, soccer, chalk masterpieces, pool parties and much more.  There is still so much left of summer and we plan to fill it with more zoo trips, camping excursions, play dates, soccer and more. Here's a few pictures of the fun we've had.  We are so excited when Darren can join us for the fun.
   


My love



Enjoying the Alaska Zoo with great friends


First soccer tournament of the summer 


First soccer tournament of the summer 


First soccer tournament of the summer 


First soccer tournament of the summer 


Visiting the Alaska Zoo


Timber - Darren took out the large tree behind our house



Its been nice & warm so the boys have enjoyed running through the sprinklers


More soccer & more family fun


Lucky Dog - she will be 13 in September


I have some exciting news on the brain front...okay, it's exciting for me because many of you wont realize how significant it is. It's proof that I am still healing, 6+ years later. Praise God! 

It's summertime... So what is the footwear of choice? Flip flops, right? I use to have flip flops in so many different colors but I got rid of them after my surgery because I figured I'd never be able to wear them again.  Well I threw some $2.50 ones in my old navy basket the other day and thought 'what's the harm?'  Well, I can walk in them. I still have a death grip on the toe separator thingy but they don't fly off my foot with every step and I don't look ridiculous walking in them (an added bonus)!!!



Flip Flops



Thoughts:



I came upon this reading this last week and it really resonated with me!  It addresses Trauma and I love that it says: "This is not a wholly negative thing. Healing from trauma can also mean finding new strength and joy.  The goal of healing is not a papering-over of changes in an effort to preserve or present things as normal.  It is to acknowledge and wear your new life - warts, wisdom, and all - with courage."

That is it!  No matter what I have endured through this brain tumor, I've tried so hard to remain positive and focused on the blessing it was/is. I am sure that sounds trite to many or to those who've had a brain tumor too, but that is it, a blessing.  I still have moments where I am uncomfortable in my new normal, but it's a reality that I need to accept.  If I don't accept it, I can never fully embrace all that has happened, good and bad.  Trauma is truly a reset button. It's not possible to return to the old and I'm thankful for that.  I'm turning my mess into my message.

Be blessed!

Monday, April 04, 2016

The comings & goings

Last time I blogged, I told you all about the opportunity I had with the Rehab Unit of Alaska Regional...to learn to downhill ski at Alyeska...well that day has come and gone and I decided to tell you all about it... but wait some things happened before that... so let's see if I can catch you up


I finally got my MRI scheduled and taken... now I am just waiting for my appointment with Dr. Kralick later this month to confirm all is well.  I've already got some brain treats planned for Dr. Kralick so stayed tuned to see my next brainy creation.  My husband and I notice a mass in my sinuses so I am waiting to find out how to proceed with that too... oh joy!

The day after my MRI, I was sitting in my car awaiting the end of the school day when another Mommy from school came over to my window.  She told me that she had left extra early hoping to catch me before I got involved in a conversation with others also waiting for the end of the school day.  She wanted to give me this beautiful bracelet that her friend made.  She told me that she carries them around waiting to share them with someone she thinks is "being the good in the world."  She wanted to give it to me because she knew my story and she wanted to tell me how she was impressed in how I was always smiling and so positive.  Even as I recall this, I'm brought to tears.  What a gift! I am so touched!  Here I was lost in thought about my MRI and being worried about what it'll mean and here was this wonderfully nice and thoughtful Mommy, encouraging me.  I started this blog as a way to communicate with family and friends about the journey I am on.  I wanted it to be raw and real and I hope it is.  I wanted it to be focusing on taking the positive road and about giving God the glory for it all. Without Him, I'd be nothing! Thank you Friend for showing me love and encouragement!


Kadin and I attended the Easter fun at Church and had a fantastic time.  we've heard the craft day during Advent is a blast too... now just to wait for that!



Easter Bunny stopped by with new Crocs, athletic pants, books, tooth brushes & toothpaste & candy.





Neighborhood Easter Egg Hunt... winter finally showed up a few days before the big day and thankfully it was all melted before the kids went egg hunting.


What a blessed day! He is Risen! He is Risen Indeed!



Boys got to meet their new "cousin" A and they were over the moon with her! I love watching how excited they were to hold and love on her. What good Daddies they'll be one day! <3 p="">



Okay, the time has come... are you on the edge of your seats?  I did it! I actually skied.  When I accepted the invitation, I did it without much thought.  I heard that one of my favorite Nurses  (Ellen) would be there and I jumped.  As the days got closer to the big event, I didn't really think much about it.  I asked my sister Jaime to come along in case I needed a swift kick in the butt or words of encouragement.  I made sure I had snow gear and of course a helmet.  I didn't mentally prepare myself at all.  Wednesday arrived and I started to get a little nervous. I joked with Darren and Jaime that I didn't really need to go, but in the end I knew I needed to. I had made a commitment and I am just not one for not following through.  Jaime and I arrived at Challenge Alaska's Girdwood Ski House at Alyeska early and waited. Soon Alaska Regional staff begin to arrive. I looked at the lesson board and was somewhat relieved that there were other past patients that would also be taking a lesson.  Ellen arrived and introduced me to everyone as there has been turn over in the past 6 years I've been gone.  Everyone was so nice. My instructor Dottyie came over to introduce herself.  She was fabulous! Full of positive energy, encouragement and help.  We headed outside to get our ski's and made our way to the magic carpet.  Yes, I made a joke about how I'm Jasmine.  She told me we were going to ride the magic carpet up and take the kiddie hill down. I looked at her like she were crazy because I notice there was nothing for me to hold onto as I got on the magic carpet or rode it.  She showed me the hula hoop she had and talked me through how we were doing to conqueror this first feat.  We did it and we skied down the kiddie hill with the hula hoop between us. She skied backward in front of me and I held onto the hula hoop for dear life.  After a few runs down the hill like that she forced me to be even more adventurous.  This time she'd place the hula hoop around me at hip level and she'd ski behind me.  I guess it was so I could maintain more independence and decide where we should go.  Just when I was starting to get that, she decided to take it up another notch and to 'encourage' me to ride the chair life up and to ski down run 3.  I believe I looked at her and said, "Are you Crazy? There is no way!" One more trip down the kididie hill with me in front and we were headed to the chair lift. If I didn't say that this was terrifying, I'd be omitting something.  We rode the lift up and slowly made our way down the hill. By this time, my legs were becoming fatigued and wanted to give up.  I couldn't force my left leg to behave which made stopping difficult.  I think I only really fell once, usually, I felt out of control and couldn't stop so I  just sat down. Getting back up was hard. After run 3, I asked if we could go back to the kiddie hill because my legs hurt. Dottyie agreed to let me out of my ski's to stretch if I promised to put them back on. I did.  It was a unique experience, full of an array of emotions.  I remember at one point, my body relaxed and it felt good. I am glad for the opportunity and I told Dottyie if she was there next year, I'd really consider taking another lesson with her.  She was the perfect mix of encouragement & push for me. I am blessed to have met her.  So we will see what the future holds,  I don't have any plans for skiing this year as the snow is melting away but I won't say never again. I'm proud of me and I so beyond Thankful for the opportunity.

Be Blessed,


Wednesday, March 09, 2016

New opportunities



On Monday, I was praying that God would allow me to use my brain tumor & recovery as a platform... To allow me to think this journey was useful.  I walked into the house from picking the boys up at school and the phone rang.  Calling was someone at Alaska Regional... I'm waiting for a call back to schedule my next MRI, so I assumed it was that. I answered the phone quickly grabbing my schedule so I could be ready to book it. On the other end was someone calling from the Rehab Unit and she was inviting me the first reunion for rehab patients. I was intrigued and then she said it'll be held at Alyeska and they were gonna have instructors on site to teach me to ski. I laughed out loud.  Really? She was calling from the rehab unit... I left using a walker... They really thought I'd be able to ski??? I reminded her that my balance was still off and that I don't think skiing would be a good idea.  I asked a little more about the event and then Sandy drove it home by saying Ellen, my favorite Rehab nurse, was going to be there and she recommended me.  So, I agreed.  I'm full of emotions about it! I remember my attempt at paddle boarding this past summer and I'm nervous for what will happen.  I'll be sure to let you all know how it turns out.

It's funny, I've sat at Hilltop the past two winter seasons thinking about how my boys & Darren now have something in common and feeling somewhat sorry for myself that I can't partake.  I only let myself mop for a moment and then I remind myself that I don't like to be cold, I can always go on ski/snowboard adventures & have quiet time for myself while they're out shredding the slopes... But now??? We will see what happens. God knows!

I'm still looking for what God has in store for me and I'm confident it will be great!

Thanks for listening!
Blessings.

Wednesday, February 17, 2016

Flashback

Monday was a rough day! It was Presidents Day so the boys were off school and Darren was home from work.  We ran errands & spent time together.  Sounds bad, huh? No, that part was great!  I noticed a tightness in my shoulders that wouldn't go away despite several attempts at stretching. I finally took some children's Tylenol (still can't swallow pills) and the boys left for a hour to go skating at the school. I figured I'd just rest and the headache that was lingering would go away.  Darren came home with the boys and retreated downstairs to do some work on the basement.  All the hammering & drilling made my head buzz.  I tried to eat dinner as Darren took Zach to soccer practice.  Kadin continued his carefree singing & noise making. When Darren returned home with Zach a while later, I retreated upstairs to take a bath. I took another dose of medicine and crawled into a hot bath hoping my body would relax. I emerged half an hour later feeling relaxed & slightly better.  I was still aware of my body's habit of quickly tensing up. I only hoped to make it to bedtime so I could sleep this migraine off completely.  No luck... Within about 20 minutes, my head was again aching.  I headed back upstairs & laid on my bed.  About half an hour later, Darren gathered the boys up for bed.  I headed downstairs for an ice pack.  I've learned that sleeping with a gel ice pack in the crook of my neck often does the trick & I can relax enough to go to sleep.  I went through four ice packs before I was able to fall asleep.  Darren had a late hockey game and he toyed with the idea of going & whether I'd be alright, the events of 6 years came flooding back instantly.  Six (+) years ago he went to his late hockey game and left a 35 week pregnant sick wife at home with a 2 1/2 year old.  Cut to the flash forward version of the story... It was the night he broke his leg in two places.  We looked at each other and I said nothing, hoping he wouldn't go b/c I was afraid.  Apparently, he was feeling similar and decided not to go.  He stayed & replaced my ice packs until I went to sleep.  What a great caretaker!!! Love that man more than I could ever say!

I woke up Tuesday feeling a ton better and no traumatic story to share. Thankful!!!

During this time of the year, I am overcome by the emotion of all that happened. My sister Jaime kept a log of emails, prayer requests & comments along with a detailed account of my care.  Each year, I read this notebook and I'm so thankful.  It reminds me of how far I've come. It reminds me the Gods still in the miracle business and I am one of them.  I'll be doing my next MRI in the next months and with that comes a multitude of emotions. I pray it still shows all clear.  I will be sure to share the results after its all done. Now to wait for the Doctors office to schedule it. I need to start refining my next brain treat for Dr. Kralick.

Thanks for listening!

Blessings.