Monday, December 15, 2014

ONE YEAR!

So today is the one year anniversary of my seizure and brain tumor diagnosis.  
Wow... what a year it has been for our family.

I don't want to get too emotional but the one year marker is kind of a big deal.  To think that one year ago today, our lives were flipped upside down.  Things still haven't really settled down for us.  I feel different every day, some days I feel great, other days I have no energy, no patience and feel like junk.  Jamie is still nervous a lot.  Just yesterday as Owen was in his room trying to fall asleep he ended up knocking over a nutcracker in his room.  I was sorting laundry in our room and Jamie heard a thud and jumped off the couch sprinting down the hall thinking something had happened to me.  It was only Owen's nutcracker but just to give you and idea of how we are still on edge all the time.  

I think the hardest part of the last year for me has been dealing with the fact that I don't have 100% of my energy.  I always feel like I could be doing more with Owen and Jacob, that I could be more supportive to Jamie.  I feel like this past year has been so much about me that Jamie has been on an island all by himself although he tells me that is not the case.  It's just very hard to feel like you aren't able to give your family 100%.  

Every year for Christmas I make Owen a photo book with all the photos from the past year.  He opens it on Christmas Eve and that is what we look through before he goes to bed that night.  I always wait until the last second and end up making the entire book in the few days before the cut off for Christmas delivery.  This year I told Jamie I just wanted to do it after New Year's because I was too tired.  Jamie said that was fine but gently pushed me to just sit down and get them done for Christmas.  He entertained the boys so I could spend almost two full days completing the books.  This year and last year it ended up being TWO books, both 100 pages long!  I am so grateful for Jamie encouraging me to do it.  Looking at all the photos from the last year made me realize that although I wasn't at 100% I was still a good mom and an okay wife.  Looking through the photos, you wouldn't even know everything that I was going through.  It kind of knocked down my negative thoughts of not being a good enough mom or wife and I could see in the photos that everyone was happy and having fun.  Kind of made it seem like we just had a normal year.  

Then I sat down to gather photos to include in this blog and it was a very quick reminder of just how much crap we went through.  It was hard looking back at some of the photos, I reread some of my first blog posts and it almost made me sick. 

Thinking of how scared Jamie and my family must have been as I was taken back for brain surgery.  I have never asked Jamie what that was like for him, I don't even think I would want to hear how scary that was for him. 

Prepped for surgery. 

 To think we went through last Christmas waiting for the results of my biopsy, not knowing if this was stage 4 brain cancer and I had months to live or if it was totally benign.  
 
Not being able to drive for 3 months because of my seizure.  Not being able to lift Jacob for 12 weeks because of my brain surgery.  I reread my blog about how terrified I was to walk into the Cancer Center for the first time. 


Going through 6 weeks of daily radiation


Looking back at how swollen my face was from all the steriods!  I gained over 30lbs!


Don't miss this moon face.  :) 

Oh the hair loss!!! 

Good Lord, what an awful photo! 

Last day of radiation!!!

Ringing the bell after my last session.

Leaving with my creepy mask.

Celebration lunch at The Harbor House after my final radiation in March.

Then I started with my chemo.  Some months were good, some were much harder.  I will be starting my 9th round any day now.  Just waiting to recover from my terrible cold.  It's just crazy to look back on everything that has happened over the last year.  On top of that, I have done my best to stay on top of everything for Owen.  We still went ahead with the week long hospital stay to see if he would be a candidate for brain surgery for HIS seizures.  He started kindergarten this year which meant getting his IEP in place at the new school, getting to know an entire new team of therapists,trying to stay on top of what was working for him at school and what wasn't.  Realizing that kindergarten was going to be much harder for him than we anticipated and working with his team to figure out ways to adapt things for him.  Fighting our insurance to cover his new taller leg braces.  Ugh, the time I spent on the phone with our insurance company this year... yuck! 

But even though there was so much going on..... there was still so many great things about this last year.  I look back through my photos and see so many great times and I am reminded of all the great people in my life.  I would have never made it through this year without all the love and support that I received.

Lindsey R.  
The amazing woman who stalked me down on Facebook so that she could help me have a good wig experience.  I have no doubt in my mind that Lindsey came into my life for a reason and she has been such a great support for me over the last year. 
Not only has Lindsey always been there for me as a shoulder to cry on (through Facebook messenger) but more than anything she has inspired me to be a better person.  I have never met anyone like her.  She lives her life to help others.  She sees someone in need and she ACTS on it.  She is the most passionate person I know, she had an idea of setting up some sort of non-profit to help provide wigs to people in need.  Within a day she had a company name, logo, fundraiser set up and she was off and running.  So many people have great ideas but just don't act on them.  Not Lindsey, every single day she puts her heart into helping others.  I know everyone that knows her would say the same thing.  She's amazing.
 
See how happy I am with my fancy wig!


Owen's Therapists

We were SO beyond blessed to work with the most amazing women for 2 full years while Owen was in 4K.  Emily, Pat and Cathy will forever have a very special place in my heart.  I adored them LONG before my health issues but what they did for us after my diagnosis was above and beyond.  When Owen started school again after my hospital stay and MINE, it was NOT easy.  He was scared to leave me, he still wasn't himself physically or emotionally.  As a mother it breaks your heart to see your child struggle.  Emily, Pat and Cathy did everything they could to help not only Owen but me as well.  Emily showed up early so that she could help Owen ease into school in a room with just the two of them.  They would send me text updates letting me know he was okay.  They offered me endless words of encouragement.  Pat visited Owen while he was in the hospital, they created sticker charts for him for a long  day of procedures to help him not be so scared.  Emily actually went with him for a long scary procedure where they put half of Owen's brain to sleep to see if he was able to speak using only the right side of his brain.  To see Emily walk back into the room with him, she was dressed in head to toe surgical clothing and with a team of about 15 doctors.  To know that Owen had a familiar face in the room with him is something we could never thank Emily enough for.  

I had the honor of photographing Emily's wedding this past summer.  I was having the best time, getting to know Pat and Cathy's husbands, meeting Emily's AMAZING family... it was a great day.  Then during the reception it came time for the Jake (the groom to dance with his mom) I was on the dance floor snapping photos of them when all of a sudden I became overcome with emotion.  I was suddenly wondering if I would ever have the chance to dance with Owen and Jacob at their weddings.  I was literally sobbing behind my camera praying no one noticed.  When the dance was over I walked over behind the DJ and pretended to be digging through my camera bag but really I was just wiping my tears and trying to compose myself.  I finally pulled myself together and got back out on the dance floor to keep taking photos.  Well not even 5 minutes later the DJ played Timber, Emily ran up to me, grabbed my camera out of my hands, set it on the table and pulled me onto the dance floor and me, Emily, Pat and Cathy all danced and sang the song at the top of our lungs.  That 3 minutes of dancing and singing was one of the highlights of my year.  Being able to sing and dance with the women that had been there for me when I needed it most.



My Family
A huge thanks to my family and Jamie's family.  I know this has been a long year for them too.  I know they wish I would call and actually talk more.  I have tended to shut people out over the last year and both families have been very patient and understanding.  They would patiently wait for blog updates to see what I was feeling or thinking.  They were always a phone call away if we wanted to talk or if we needed help with anything at all.  They helped keep the year as easy for us as possible.  I know a lot them wish they could do more but their love and support has meant the world to us over the past year.  






Friends and Family
A huge thank you to all of you that have sent cards, texts, emails etc with words of encouragement.  I can't tell you how much it has meant to have such an army making this journey with me.  I have never felt alone.  It seemed like anytime I would have a bad day I would get a text or an email at just the right moment.  Just last week I was starting to get kind of depressed about my photography.  I wasn't able to fit in all the people who had contacted me for photos this fall.  Some of the families I have worked with for numerous years and I just didn't have the energy and had to say no.  I was so sad, I LOVE what I do.  I LOVE photographing families and giving them photos they will cherish for years.  I was really contemplating if I should continue with it next year.  As much as I love it, do I have the energy to continue it?  Then the next day I received this email from a client that I photographed a full year ago. 
Hi Alison,

I've wanted to send this message so many times over the last year and am finally getting to it just as you approach the one-year mark of an event that changed your life forever.

Just weeks before, our family had the great opportunity of meeting you and working with you as you captured the best pictures of us. We were thrilled to touch base with you (through a mutual friend - Heather T.) and grab one of your "mini sessions" - what a steal!! It was so cold (the day after Thanksgiving 2013), but you were so cute, so funny, and our kids responded to you so wonderfully. One year later, my daughter still remembers you saying, "Oh Yeah" over and over. Both kids thought you sounded just like Vector from Despicable Me. And they're right . . . you did!! So funny.

We became FB friends so that you could share our photos and I've been so thankful for that. Alison, I talk about you more than I talk about my actual friends. As I watched your story unfold on FB, I told all my coworkers. I told the band that I sing in at church. I told our prayer chain at church. I told all of my family. Anyone that commented on our beautiful Christmas card last year (and people still talk about it!) - I told them your story too.

Now I could have stopped watching your story online, but I didn't - I couldn't. I see the photos of my family in my home and at the office every single day! I always love looking at them. And a split second after I admire my family, I think of you, Alison. How awesome is that!?! I think of you every single day - for a whole year - every single day. I don't think of my sister (who is my best friend and amazing) that often!

Every day I get to remember you and the gift you left with our family. In 20 minutes, outside in the freezing cold, you captured the very best thing in my life - my husband and my kids - my family!! You've done this for so many families and I have to imagine, the same thing happens to each of them. They admire their family for just a moment and then imagine, for a second, the woman behind the lens that froze time for them.

I have been praying for you and your family for all of this past year (almost year). I've loved watching your children grow over FB and hearing about their accomplishments. I've felt privileged to read your story. I love the way you lift up your husband Jamie, yet maintain privacy for him. And I am not the only silent prayer warrior you have out there, I know that!! Because of what you do, many people see their photos and then see you!

Anyway, that's it. That's what I've wanted to say for so long. I won't stop seeing you everyday as I glance at my family settled by that beautiful red train car. And I think that's pretty cool!!

All my love and continued prayers as you prepare your heart and home for Christmas.
S.T.


It was like a sign that I needed to get out of my funk. 

This is the kind of encouragement I have received over the last year from family, friends, strangers... I mean how fortunate can I be?


And my biggest thank you goes to.... JAMIE

Oh what in the world would I do without Jamie?  He has been my rock each and every day.  From the moment he caught me on December, 15th 2013 as I was falling to the floor with a grand mal seizure to last night when I was crying about my hair.... he has been there for me.  This man works non-stop to keep up with work, cooks 90% of our meals, does 90% of the grocery shopping, will drop off and pick up the boys at school if I am sick or need to rest.  When I am exhausted he will give the boys baths and put them to bed.  He worries about me non-stop.  Yells at me if I don't answer my phone because he gets so nervous when I am home alone. He lets me cry when I need to, he knows when I need space and when I need a hug.  He does it all and never complains, never says he's tired or that HE needs a break.  Over the last year, I have had girls nights, massages, pedicures, days of rest.  Jamie very rarely gets a break and you would never know.  He is such an amazing man and I am so proud that Owen and Jacob get to see the example he is setting for them each and every day.  I have no doubt that they will both grow up to be compassionate and selfless men.  They will be helpful husbands who know how to cook, do laundry, love their wife and would do anything for them because that is exactly what Jamie is teaching them.  

Last night Jamie and I were sitting on the couch and trying to remember the night of my seizure and my hospital stay.  I have very little memory of any of it.  Jamie filled me in on some of the details.  He told me how when he laid me on the wood floor in our bedroom while I was seizing so he could grab his phone and call 911 he thought I was dying.  He had to leave me in our room to quickly open the door and turn on the outside light for the paramedics.  He glanced at me before he left the room and didn't think I was breathing.  When the paramedics arrived I started to come to but I couldn't talk and was looking at Jamie like I had no idea who he was.  Jamie was terrified that I had a stroke and major brain damage.  As they took me away in the ambulance he had no idea if I was going to speak, if I would know who he was.... SO terrible.  Then we talked about the hospital stay and my surgery and how crazy it all was.  How we had to spend Christmas last year trying to stay positive as we waited for the biopsy results.  Then we were just kind of quiet for a few minutes and I started laughing.  Jamie asked why I was laughing and I said "wow, what a year... and let's not forget that I was robbed at gunpoint in May".  That is NOT a laughing matter at all but REALLY.... what in the hell?!  With all the shit that we had going on in 2014.... did I really need that too?  I mean, if I was writing a book people would think I was making that up!   


And my final thank you goes to everyone at the Cancer Center.  From Maggie in Small Stones who is so sweet, to Dr. Connelly who is kicking butt with her chemo regime, the entire radiation team including Dr. Siker, everyone who draws my blood each week, all the people that have done my MRIs.  Literally every single person I have dealt with over there has been positive and amazing.  I never wanted to step foot in that Cancer Center but I can tell you that it's actually a really nice place to be.   

So I have officially known about a twinkie sized tumor in my head for 365 days.  2014 wasn't the best year of my life so I am ready to (as the boys say) "give it the boot".  





Bring on 2015.  
Bring on my last four rounds of chemo.  
Bring on more stable MRIs.
Bring back my energy.
Bring on fast hair growth.
Bring on a busy year of photography.
Bring on a year of fun with the three amazing guys in my life. 

If you made it through this FOREVER long post, thanks!

Thanks again for all the love and support!  

MERRY CHRISTMAS! 




 

Tuesday, December 9, 2014

So long month 8



Well I have officially completed EIGHT months of chemo!  Hell to the yeah!  Only four more rounds to go!  We actually had to push my eight month of chemo back a week since my blood work wasn't looking so hot.  So I got a full four weeks off between my 7th and 8th round and I was put on a slightly lower dose. So last month wasn't terrible.  With my first few rounds of chemo, the end of my actual chemo week and the FOLLOWING week I would be REALLY tired.  As in sometimes I needed a 3 hour nap within an hour or two of waking in the morning.  Now I don't seem to have such highs or lows, I just feel pretty tired all the time but honestly, that could just be Jacob and Owen that are wearing me out.  If I had to estimate I would say I feel like I am running at about 70% of my normal energy.  Whatever... it's manageable, I can't complain.  


It will be so strange when my energy level gets back to 100%.  I know that it can take up to a year to fully recover from chemo and radiation so it might still be awhile but it will be nice when that time finally does come around.  For now I am just thankful for how well my body has been tolerating all the crap being throw at it.  I am thankful that my boys will sit and watch a movie when I am tired.  I am thankful that Jamie is such a great man who is behind me every step of the way.  

I had an MRI yesterday and saw my neuro oncologist today for the results.  I went to my MRI alone yesterday.  Jamie usually is able to come with me for all my appointments but he is crazy busy with work right now and honestly I am just laying in the huge MRI machine for like 30 minutes so there isn't much for him to do.  Well usually I just think random thoughts during my scans but yesterday I got kind of emotional in there.  Thinking about how next week will mark ONE YEAR since that scary seizure and the diagnosis of my brain tumor.  I don't recommend getting emotional in the MRI machine.  In case you haven't had an MRI of your head or brain (which I assume most of you haven't) this is what it looks like
 This is obviously NOT me and this is obviously NOT from anytime in the last 15 years.  Machine still looks the same but the nurses are not in starched white gowns.  I lay on a flat bed, get a comfy wedge prop under my legs and your head has a cage thing around it.  Your head is stuffed with padding so there is not room for movement at all.  I always get a nice warm blanket put over me and you hold onto this little squeeze ball thing (note the thing in the person's hand above) and then they basically feed you into the machine.  If you need anything you squeeze the ball and you can alert them to anything that is wrong.  Well today I desperately wished that squeeze ball thing was really thing of eos chapstick which are shaped just about identically because my lips were SO chapped.

 Anyways, back to my story about the MRI machine being a bad place to get emotional. So I am laying there thinking about the entire last year, I can feel the tears start to well up in my eyes but you can't do anything about it.  I really don't like letting people see me cry and all I kept thinking was "I wonder if the people running the machine can see my face right now".  I am pretty sure they can.  Slowly the tears fill my eyes and start to slowly run down my face.  I am trying so hard to hold myself together.  There is barely enough to form a full tear but just enough to make it run down my face on each side and the tears go SO slow.  Like literally it must have taken 3 minutes to run from the outside corner of my eye to the padding packed around my head that is MAYBE an inch away.  You want so bad to reach up and swipe it away or just shake your head a tiny bit to hurry the tear on it's way but you can't.  So you just have to sit there and hope that if the techs are able to see you that they aren't looking right now.  Man, I can be in such a great mood and one sad thought and I am a wreck.  I was emotional for the first few minutes and then composed myself by passing the time thinking of what else I needed to buy for Christmas.

The MRI went well and we saw my doctor today and got the good news that everything is stable. No changes in my brain tumor. My bloodwork looked good too which means I can start my ninth month of chemo this coming Monday.  I was happy to hear that because I really didn't want to be on chemo the week of Christmas.  Now I can get it over with next week and enjoy food and DRINKS with my family at all the fun Christmas get togethers. 


In other earth shattering news........


I got my hair cut and colored today and went outside for the FIRST time in nearly 10 months without a wig or hat on. 

I thought this day would never come.  I still miss the days of long hair and hope to get back to that but for now... this is what I have got to work with.  I can't thank Emily enough for the great cut and color.  We laughed a lot during my hour with her.  I joked about how I felt so womanly as she trimmed up my mullet with the electric clippers.  I feel a little like Peter Pan but it could be much worse.  I picked up Jacob from school today and sported my newly cut and colored hair.  First time in about 10 months walking out of our house without a wig or hat.  I was crying before I even got out of the car.  I felt so weird, almost felt like I was walking around naked....this will definitely take some getting used to.  I am so lucky that I have such a great support system everywhere I go.  I got out of my car crying and instantly ran into four other amazing moms who were so supportive while we all walked in together.  When I walked into Jacob's room to grab him the lights were off as the kids were just waking up from their naps.  Another one of the moms noticed me crying while I grabbed Jacob and was so sweet and gave me a hug and said "life's messy, you are amazing and you look beautiful".  I could have never made it through this last year without the love and support I get from every single person in my life.  To anyone that saw me today while I was walking around crying or posted on my Facebook page with words of encouragement.. thank you so much for the love.  This year has been a journey and that is putting it lightly. 

I hope to have another blog up on Monday night as that will be the ONE year marker but for now....


Here is the new hair.  


Fun Fact:  I got lots of support and positive feedback when I posted this on Facebook.  Well I will have you know, my hair isn't just so adorable that I snapped this selfie and posted it.  I took about 50 photos, dug through my purse to find lip gloss, moved my car for better lighting, tried a million different angles to get a photo that I wasn't too embarrassed to post.  I have left the wig off all evening and the shorter hair is growing on me.  Every photo of me from now until forever will probably be from this angle because the other side of my head received a LOT more radiation and my hair is really thin.  Jamie said we should just spray my scalp to help fill it in.  Thanks hun! 

Alright, off to eat some Cookie Dough ice cream that Jamie brought home from Kopp's.  :)  


 AND LASTLY....  If I am done with the wigs I can pass them onto this guy.  :)


Night!





Tuesday, November 11, 2014

Seventh Month Slump



Wow, just realized I hadn't blogged in almost TWO months.  Yikes.  Thought I'd write a short blog since I have had lots of people messaging me wondering how I have been doing.  I finished up my seventh month of chemo in mid-October.  My sixth month was TERRIBLE so I was nervous for my 7th round but it went okay.  Nothing horrible, just tired and unable to eat much.  I kind of got into a rut after my 7th round.  I was just kind of over the whole situation.  Over the doctor appointments, the meds, the headaches every time the weather changed, the never ending fights with our insurance, just kind of over being so positive.  I walked around for a day or two being crabby and having a little pity party for myself.  Then I remembered back to my high school cross country days.  I can remember that about two-thirds of the way through every race I thought to myself "I should just quit, this isn't fun, I should just pretend I rolled my ankle and start walking".  Well I never let myself do that, I worked through the mental struggle and I ALWAYS finished strong.  I would like to think this is the same, I am a little over half way through my year long chemo and I just want it to be over.  Hopefully I can make it a little further, get out of this seventh month slump, get through the 8th month, see the finish line and finish strong.

Unfortunately, my mind was not the only thing getting sick and tired of month after month chemo.. my body has also had enough.  I was supposed to start my 8th month of chemo yesterday but my body hasn't fully recovered since the 7th round so I have to wait another week.  I get weekly CBC blood draws to make sure everything looks okay before starting another round and apparently my body is a little tired and beat down.  My white blood cell numbers keep going down so until they go up... I wait. I go back in on Monday for a recheck, hoping things look okay because honestly at this point I just want to get on with it and get this year of chemo behind me.  So fingers crossed that my blood work looks okay on Monday so I can start chemo.

I think the constant doctors appointments, MRIs, blood draws, etc are more exhausting than the actual diagnosis and treatment itself.  It's like your whole life revolves around it.  You get a one week window each month where you feel 100%, the other 3 weeks you are either EXHAUSTED, unable to eat or having major anxiety about upcoming MRIs.  I think about how life was a year ago and it's amazing how far we come and also amazing how much our lives have changed.  It's weird that it's almost Thanksgiving, the last big holiday we had before everything changed.  So thankful and SO blessed that I have made it this far.  Imagine someone telling you that in the next year you will undergo brain surgery, 6 weeks of radiation and chemo and we are going to shave your head as long as we are at it.  It's almost hard to comprehend that I have undergone all that in the last eleven months.  Yet, here I stand... still full of fight and spunk, even if I do have a pity party every now and then. 

I have been meaning to blog for awhile and just never have the energy to sit down and do it recently.  Today a friend from high school posted on my Facebook page that she completed a half marathon this past weekend.  She was about a mile from the finish and her phone stopped working so she had no music.  She wanted to quit.  She finally got her music to come back on and Timber came on, my song... she said I instantly came to her mind and her legs started going again and she thought of all I have fought through this past year and that if I could make it through that, then she could make it through this last mile.  This just made my day.  Made me sit down and post a blog to thank everyone that has cheered me on.  People tell me all the time that I have inspired them but really I have gained so much strength and inspiration from all of you.  I would not have made it this far in my treatment without such an amazing support system!  

Well I am off to bed.  Thanks for reading.  Here are some recent family photos from the AMAZING Katie of Katie Geier Photography.





HUGE thanks to Katie for the amazing photos that we will treasure forever!  She was wonderful to work with and so great with the boys.

Night!

 


Monday, September 22, 2014

Completed SIX Months of Chemo!

SIX MONTHS OF CHEMO - DONE!!!!


 


Well I did it!  I have officially completed my sixth month of chemo.  I am halfway done!  Hell yeah! 

This will be a short post.  I am still catching up.  I wish this post was full of positivity and high fives for getting to this point but this month of chemo was BRUTAL!  I am not sure what the issue was, I went into the week with a really bad cold, I hadn't been eating well because of the cold and then the chemo really knocks out my appetite so maybe that was it but this past week was the worst I have felt since this whole mess started in the first place.  I spent last week forcing myself to try and eat anything I could stomach, I had terrible spells of being dizzy and confused, I had NO energy and constantly needed to sleep and to top it off I spent one full night in the ER getting a 3am cat scan to rule out any brain swelling or changes with the tumor because I was so out of it.  Good news is that the scans all looked stable, we will learn more at my MRI in October but for now they believe it was all caused by being sick, not eating, chemo..... just too much for my body at one time.  Who knows? 

We have dealt neurological issues with Owen since he was little and we always said it will be SO much easier when he is older and can communicate what he is feeling.  Jamie and I can now see that it will never get easier.  I am old enough to communicate what I am feeling... dizzy, confused, weak but you have NO idea what is causing it or what it means.  It still sucks and leaves you freaked out and worried.  It's hard to describe the feeling of being scared of your own body but that is what I felt all last week.  It was just a long week of praying that I didn't have another seizure, praying that waves of being light headed would pass, praying that my tumor wasn't doing something terrible in my head.  Yuck!  Poor Jamie, he was so worried about me too. He was so great though, took AMAZING care of me.  Made me all sorts of different things to eat, kept the boys busy so I could nap as much as possible and was just there for me like he always is. 

I am finally feeling better.  I would say that I am at like 80% today.  Definitely not 100% yet but getting a little closer every day.  

Stupid chemo...hopefully the fact that it kicked my butt so hard meant it was really doing some damage to that damn tumor!  I don't mind feeling like crap if it's for a good cause.  

How I really feel about my 6th month of chemo.
Well that's my whine for the day.  

Half way done!

The sixth month was a big kick in the butt but I got through it.  I think I can still say...

I GOT THIS. 

Sunday, September 14, 2014

SMILE


I was meaning to post earlier this week but just wasn't feeling like my normal self.  I don't know what it was but I was just kind of in a funk all week.  Jamie and I celebrated our 10 year anniversary last week which I should have been so happy about but I kind of found myself wondering if I would be around another 10 years to celebrate our 20 year anniversary.  So instead of celebrating that past 10 years, I was just praying with everything in me that I would make it another 10 years.  A really dismal thought but I just couldn't shake. I also was very bummed about the fact that my hair is just not growing in very well at all on the right side.  So stupid and trivial but this past week I kind of came to the realization that I will not be pulling off any sort of "cute pixie" hair style because you can see a lot of scalp on the right side of my head; the hair is growing back SO thin.  Then there was the fact that I was at the Cancer Center Thursday to get my prescription for my 6th month of chemo.  HALF WAY!!! Again, seems like it should be something exciting but again I found my mind wandering to dark thoughts.  The past six months have FLOWN by, it's like I blinked and I am half way done with chemo.  For me, I don't want time to fly by.  I am most likely not going to live to be 80 years old, hell I am just hoping with all my might that I see the boys graduate from high school, maybe even see them get married, have kids of their own.... and I know that I may not be around to see all those moments.  So I kind of want time to stand still.  Realizing that six months has gone by so quickly kind of sucks, kind of makes me cry, kind of put me in this stupid funk! 

I was trying so hard to get back to my positive self but I was really struggling.  I think Jamie could tell and he was trying his best to help.  Then Thursday I had my monthly doctor check up.  I usually enjoy going, everyone at the Cancer Center is SO amazing, full of smiles and positivity but I walked in and just wanted to cry.  After my blood draw I went into the bathroom and as I was washing my hands I saw an older woman that I have seen there many times before.  Usually while I am at the Cancer Center I make a point to look at people in the eye and smile but Thursday I just didn't have it in me.  When I finished washing my hands I walked by the women to grab a towel to dry my hands I could tell she was looking at me, I looked up and she looked and ME in the eyes, smiled and said "hi" in the most warming and friendly voice.  Just that one little smile and I slowly started to get out of my funk.  That one smile was the start of a whole chain of events over this past weekend that have brought me back to where I like to be.  SMILING and thinking positive!  I truly believe that having a positive attitude is helping me battle this brain tumor just as much as my radiation and chemo.  

Since my diagnosis, I have felt strangely at peace with my health and have this sense that things happen for a reason.  I was visiting a friend at Children's Hospital last week , her son was in the hospital.  We started talking about my brain tumor. I don't talk about it too much and I think a lot of people think that radiation and chemo will BEAT it and that I will be in remission or whatever.  That's not really the case with brain tumors.  It will never go away.  Our goal is to keep it stable as long as we can and that each time it starts to grow we have to try and fight again and at some point it just won't respond to treatment.  She asked how I stayed positive, a lot of people ask that.... I guess I just feel that this whole "mess" came into our lives for a reason.  I feel like God has a plan for me, I am not a super religious person but I do feel that he is using me to help others, to motivate and inspire people that may be in need, to spread the positivity and smiles to everyone I know.  The chain of events that happened this weekend surely confirmed for me once again that there is some sort of bigger plan.  The last few days have shown me more than ever that I need to keep my positivity and keep that smile! 

SITUATION ONE
It all started with that smile in the bathroom on Thursday.  Usually I am the one always making a point of smiling at everyone while I am at the Cancer Center and the very first day that I am there feeling down, someone smiled at ME!  

SITUATION TWO
Then on Friday I took a nap and when I woke up I found a text from a friend.  This is the friend I visited at Children's hospital earlier in the week.  Back in December when I underwent my brain surgery, my sister in law Amy bought me a pair of Ugg slippers.  I have never owned anything Ugg in my life and it was one of the most generous and appreciated gifts ever!  Well when my friend's son was admitted to Children's for an extended stay I paid it forward ordered her a pair of Ugg slippers to wear while she was at the hospital caring for her son. This was the text she sent me two days ago.
 



She was paying it forward as well!  Proof that I am making a difference.  My small act of kindness is spreading to someone else who hopefully spreads it to someone else... and so on and so on! 


SITUATION THREE
Then I sent over the photo below to Lindsey, the amazing woman who came into my life to get me a wig but really came into my life for MUCH bigger reasons.  

 
Well I just sent her this photo telling her how I was having an emotional breakdown about my hair and how thin it was growing back in some parts.  She sends me back the following message:

Telling me that it's all going to be okay and that she is thinking of starting a charity to give away wigs to women in need.  Once again, an example of how in small way, I am part of a bigger plan.

I mean if those three situations weren't the proof I needed to keep chugging along, keep being positive, keep smiling.  If that wasn't proof that I am being used as a tool in a MUCH bigger plan....I don't know what it was!

THE ICING ON THE CAKE THIS WEEKEND
 I have mentioned before how much I LOVE photography.  It's kind of my escape, a chance to do something I love and forget about everything else. In the past week or so I have kind of been contemplating how much more I want to do it, I just hadn't been feeling myself, was I over doing it... should I just focus on my health and my family?  Well Saturday morning I got to work with the most adorable family.  Their middle child was crying the second they opened the car door.  He didn't want to take photos and didn't want anything to do with me.  Well by the end of the session, him and I were total buddies and he was crying that I was leaving and not going on a nature walk with them.  May not seem like a big deal but I got in my car with a renewed sense of happiness, it was like a little sign....a little reminder of how much I love photography, how crazy I would be to give that up, how CRAZY I would be to not share that gift with others, how great it makes me feel to know I captured images that a family will treasure for years to come. Then to top it off my song TIMBER was playing on the radio!  It's not played on the radio very often any more, that SURELY was the final sign I needed to get my mojo back and I can assure you I turned the volume up and sang as loud as I could and danced in my car by myself. 

Finally back to feeling like myself again! 


So I guess the moral of this post, is STAY positive, use the gifts God gave you, appreciate every day, be kind to those around you... simply put .... SMILE!  It's so easy to go about our day to day lives and focus inward but guess what?....  When we can choose to look at people in the eye, we can choose to SMILE at them.  Chances are they will smile back.  So simple, it takes nearly no effort at all and it could have such an impact on someone's day. 

So as tomorrow marks the start of my 6th month of chemo, do me a favor and make a point to smile tomorrow.  Put down your phone as you walk around and look at people and smile.  You just never know what that little smile could mean to them tomorrow! 


And I will wrap up this blog with a few smiles of our own. 

Happy 10th Anniversary to my amazing husband Jamie who will finish reading this blog and think "so this is why she was so moody all last week". I love you a million times more than I could ever write in words.  You have been our rock through all of this.  I am so lucky to have you by my side each and every day.  Here's to another TEN years!!!


So get out there and spread the SMILES! 

"Count your age by your friends, not years.  Count your life by SMILES, not tears."

                                                                     - John Lennon


This blog dedicated to the woman who smiled at me in the bathroom on Thursday, you have no idea how much I needed it. :) 


 

Monday, September 1, 2014

Owen Starts Kindergarten Tomorrow

I can't even put into words how it feels to know that tomorrow Owen starts kindergarten.  I have a ton of emotions going on right now but I have to say the word that best describes what I am feeling is PROUD.  I am just over whelming PROUD of the kid Owen has become.  He has not had the easiest journey to where he is today, he has struggled, had set backs, had obstacle after obstacle but has always taken it all in stride... with that adorable smile on his face.
 
I think back to when I first had him.  The shock of going into labor at 32 weeks and giving birth to a cute little 4lb Owen with that ADORABLE head of hair.  Spending time in the NICU waiting for him to gain weight so we could take our perfect baby home.
 
The first time I saw you and started talking, you turned your head in my direction, this is a photo of that exact moment.  Probably one of the neatest moments of my life.  You were so tiny, so fragile and you heard my voice and turned that little head I my direction.  I like to think we had a pretty special connection since this exact moment. 

 We spent 3 weeks in the NICU, you were just the most perfect thing we had ever seen.
There were two Owen's in the NICU, you were know as "Owen with the hair" :) 

Then in an instant our world changed.  You turned into a different baby.  I can remember calling Jamie and saying you had been crying all day, you could no longer eat on your own, they did an ultrasound of your head and we were told you had a brain bleed, a grade IV (the most severe brain bleed).  Here we were, new parents trying to navigate our way through the NICU, you were supposed to be coming home any day and just like that, our lives were forever changed.  Within a few hours you were transferred to a different hospital where you underwent so many tests.  You were so strong and brave even when you were so tiny. It was some of the scariest times our of lives.
  The doctors didn't know what your quality of life would be.  The amount of brain damage was significant.  There was no way of knowing if you would meet your milestones, walk or talk or do all the things we had envisioned for your future.  They found no cause for the brain bleed other than bad luck and after about another week we were able to take you home.  We were SO happy to take you home but it was hard.  Taking a baby home not knowing what the future would hold, what challenges you would face.  I battled post pardum depression at the beginning, your dad was my rock, he got me the help I needed and was by my side so we could both be there for you in any way possible.  We started you in therapy almost immediately in hopes that as your brain developed it could reroute and compensate for the damaged areas.  
 
Around 6 weeks old you started tracking objects with your eyes.  It was really the first sign we had that your brain was working and that you had a good understanding of the world around you.  I can remember the feeling when I realized you were indeed hearing and seeing me, you knew me, you needed me.  It was like in that moment my life became clear.  All my life I had been an athlete, I was an all american in track in college, team captain of just about every team I was on through my entire life, I loved to be part of a team, to motivate and help other achieve their goals.  In that moment I realized that God did not give me those skills so I could be a good athlete in high school and college, he gave me those skills and had me in sports to help develop me into who I really was... mom to a child that needed me. A child who would need me to motivate him, to cheer for him every single day, to push him when he was tired, to pick him up off the ground when he was defeated, to fight the insurance companies for the services we needed and to make big celebrations out of every hurdle we cleared.
 
I always feared what it would be like for Owen when he entered school, if he would be teased, if people would understand his speech, if he would be able to navigate the playground like his peers.  Jamie and I have literally spent the last 6 years preparing to send him off to school.. to go to school with confidence, to succeed and thrive in a classroom of peers.  It's been a long journey but it's been so amazing.  Things that other kids learn automatically, walking, talking, jumping... were a long process for Owen.  We have spent countless hours in therapy over the last six years and Owen has shown us time and time again that he can do anything.  I am so proud of the Owen that will be hopping out of my car tomorrow at school and I am really excited to start this next chapter in our life.

 






Owen you have made us SO proud!  You have taught us so much.  I LOVE that you are so excited for kindergarten tomorrow, that you are most excited about learning to read, that you want to wear your Joker costume to school tomorrow. I love that since I said you can't wear the Joker costume to school that you are sleeping in it tonight.  I love that you introduced yourself to two kids at the open house all on your own, I love that you can run and climb around the playground, I love that you are not bothered by the fact that you aren't always as fast as everyone and that you aren't able to climb everything that everyone else can.  I love how you taught me patience, determination, how to always smile.  I love that you are going to be so pokey tomorrow morning and I will be arguing with you tomorrow to hurry up, get dressed and eat breakfast.  I love that you requested that we pack some green olives in your lunch for tomorrow.  I love that when I asked you what you wanted to do for a job when you grow up you said you want to drive diggers.  I love that I KNOW the only reason you said you want to drive diggers is because you know Jacob would be jealous of that.  :) I love that although these past six years have been an uphill battle we have climbed that hill together and we are now standing at the top with big old smiles on our faces.  
 
I love you to the moon and back.  LOVE YOU OWEN!!!!

Alright, off to get all the last minute school stuff ready and then heading to bed.  Thanks for all the love and support! 
 
Night! 

I dedicate this post to two friends of mine that are currently in very tough spots of their lives.  One is dealing with the loss of her husband and the other is currently dealing with her son's recent diagnosis.  I know you gals are struggling right now.. know that I thinking of you both non stop, that I realize that your lives are forever changed but that as time goes on, you will see things differently, you will have a new appreciation for life, family and friends.  You are both amazing and can get through this!  You are warrior mama's and your children are both SO lucky to have you!