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!


Wednesday, August 27, 2014

Month FIVE of chemo is done

Five Months of Chemo - DONE!

So my last post was sharing good news of my last MRI.  Still so HAPPY about that.  We got that news on a Thursday and that following Wednesday we were supposed to be flying out to Napa for an early anniversary celebration.  Instead we got the news on Saturday that my dad had a heart attack.  I didn't even need to ask Jamie, I just immediately canceled our airfare and started planning with my sisters to see how quickly we could get up north to be with mom and dad.  They have been there for us through all sorts of stuff and no matter how busy, tired or stressed they are.. they show up immediately willingly to help wherever needed.  It is no different with the roles reversed.  Abi was able to fly in with Piper from Phoenix the very next day Abi, Kim, Piper and I were headed to Marshfield for the week.  

Dad had NO idea we were coming... we texted him this photo saying we were on our way.  He was pretty happy to say the least. 

We ended up staying Sunday through Friday.  Dad was given blood thinner when he first got to the hospital so they weren't able to do the by-pass until that was out of his system.  So he basically had three full days to sit and wait and think about having the surgery.  Not an ideal situation.  Thankfully he had his three daughters to help pass the time.  Other than the whole heart attack/hospital aspect, it felt a little like a family vacation.  Just sitting around talking and laughing about old memories.  If you are ever in the area, I HIGHLY recommend Hotel Marshfield.  We got a suite for the week for like $130 a night!  Had a separate bedroom and family room, kitchenette, great outdoor pool area, nice restaurant...it was a great place.

Thankfully Dad's surgery went well, it was a long day of waiting and we were all nervous because we just haven't had the best medical luck lately but everything went perfectly and if you know my dad, you know he is recovering way faster than expected and is already back up and at it.  It takes a lot to keep us Tuskowski's down.  :)



 Want to give a big thanks to everyone that helped watch the boys while I was gone all week.  We are so thankful for such a strong support system of family and friends.

I got home from up north on a Friday and started my chemo that following Monday.  Not sure if it was the stress of my dad's stuff the week before or what but chemo KICKED my butt this month BUT I made it through.  Got some rest over the weekend and was pretty much back to 100% yesterday.  

So FIVE months of chemo are officially DONE!



Hard to believe that after next month I will be HALF way done, unless we go for the two year chemo game plan. We have another MRI in a month and REALLY hoping that might show the tumor has shrunk even more but as long as it's not growing, I am not complaining.  


Hard to believe that summer is coming to an end.  I was going to post about Owen's kindergarten open house but I may leave that for a post all on it's own next week.  Too much type, I am so proud of that little guy! It's been a long road to get him to where he is and I couldn't be prouder of him.  More to come on that next week. :) 

I had a great summer with the boys.  Had a lot of good days and some really long not so good days.  :)  I would be lying if I said I wasn't a little excited for them to start school.  Owen will be in kindergarten all day and Jacob goes to school/daycare two days a week.  Did you hear that... I have TWO days a week to actually get caught up on photography, clean the house, etc.  Maybe I can actually sit down and enjoy a show at night instead of working every night until midnight.  Gone are the days of lounging in our pjs watching movies until 10am but I am ready for the morning chaos of getting the boys off to school, the repeating over and over to get dressed, brush teeth, find your shoes, eat your breakfast, HURRY UP, WE ARE LATE, LET'S GO!   



I am also excited to get some one on one time with Jacob.  It will be just me and him Monday, Wednesday and Friday.  He has really turned into a little character latel AND a chatter box who repeats EVERYTHING you say.  We are closely monitoring what we say around this little ball of fire.  I am looking forward to trips to the zoo, playing legos (his new favorite thing) and whatever else this crazy guy has in store for me while his big brother is off at school.

 Thanks again to everyone that is following our journey.  Enjoying our last few days of summer and looking forward to the long holiday weekend.  Be back Tuesday with a first day of kindergarten post.

Night!



Thursday, August 7, 2014

MRI RESULTS WERE GREAT!

We got good news!!!!

Had my MRI this morning.  For some reason I was really nervous about this MRI.  My past ones I always went into with confidence but this one was different.  I had been dreading it all week and just had a bad feeling about it.  I don't know if it is because we leave for vacation next week and I was scared of getting bad results before leaving or the fact that things had been going so well lately that I felt like we were due for something bad but I just had a bad feeling.  

 For those that aren't all caught up on my story, in December I woke up in the middle of the night with a numb foot, within a few minutes I suffered a grand mal seizure and was taken by ambulance to the hospital where I was diagnosed with a very large brain tumor.  My sister Kim and Jamie (my husband) immediatly had me transported to froedtert where I underwent brain surgery the very next day so they could get a good sample of my tumor for a biopsy.  My tumor was first labeled a grade 2 and was later labeled a grade 3, there is still some questions about which grade it truly is but treatment for either is the same so I decided I did not want to know the definite answer.  Since then I have undergone 6 weeks of radiation and 4 months of chemo.  I am currently getting MRIs every 2 months to monitor the tumor.  This morning was another MRI day.

I had to go to the Cancer Center for bloodwork and my MRI first thing this morning.  Jamie stayed home and got the boys dropped off at summer camp and then met me before we met with my neuro oncologist for my results.  She walked into the room and immediately said "scans look GREAT!".  I can't even put into words the relief and happiness I felt.  Most of the time I can almost forget I have a brain tumor.  Other than the fact that I take chemo five days a week and have to take seizure meds twice a day, I am just a normal stay at home mom.  My days consist of taking care of my boys and they keep me BUSY.  BUT the days leading up to scans are filled with anxiety, fear, tears and stress.  I am not even sure I can explain it.  I have made the choice and made it clear to all my doctors that I do NOT want to know the expected life span of someone with my diagnosis.  I HATE thinking about dying, leaving my boys, not being the one to hug them good morning and kiss them good night every day.  I hardly EVER think this way, I don't allow my mind to go there but the days leading up to tests are different.  It's virtually impossible NOT to think about it.  No matter how hard I try, watching Owen brush his teeth, something so simple is enough to make me sob wondering how many more time I will be able to watch him do it.  It sounds crazy but it's like this about every little thing you see your kids do makes you wonder how long you will be there for them.  Will this week be the week you get the news that your tumor has become aggressive and it's all downhill?  Will I be getting really sick, become scary to my kids? I could go on and on but now I am crying again so I will stop!

Then you get the news that the scan looks good.... it's like a million pounds being lifted off your shoulders...you feel like you can take on the world...you can do anything...you want to run and grab your kids and hug them for a really long time.  It's just a high that I have never felt.  We were told going into radiation and chemo the goal was to keep the tumor stable. We were told that we should not expect it to shrink, our goal was simply to keep it from growing.  WELL today's scans confirmed what we kind of thought the previous scans were showing... that the tumor is VERY slowly but surely SHRINKING!  You read that right, it is shrinking!  When we look back to January scans and compare to today's scans the tumor is every so slightly, but NOTICEABLY smaller!  This is literally the best thing I could have heard today.  That the tumor is responding to chemo!!!  That I am kicking this things ass... I GOT THIS!  

  I want to thank everyone a million times over for all the love and support we have received since December.  It has helped us through some really dark times.  I am just so beyond happy right not I can't even express it enough.  I can breath for a few months, relax, enjoy my family without having crazy thoughts.  I can now focus on getting Owen ready for kindergarten.  We are currently trying to decide what kind of braces he needs, his current ones are too small and we are thinking we might want to get taller ones.  He goes into the cerebral palsy clinic at Children's next week and hopefully they can help us decide.  I need to get him back in for another round of neuro psych testing and need to circle back up with his neurologist to talk more about testing he underwent earlier this year.  I can also focus on NORMAL mom stuff, getting some cute new school clothes for Owen, stressing over the pinterest lunches I will pin but never make him, getting school supplies.  Even though I will miss Owen as he goes to school five days a week, I am really looking forward to one on one time with Jacob.  It's going to a be a GREAT rest of 2014!

I am so thankful for all the support.  I am SO SO SO thankful for great results we got today.  Some people question why I don't want to know 100% if it's actually cancer or what my life expectancy is but honestly, having a bit of unknown is what keeps me sane, lets me know I am still LIVING!  If I knew exactly when this tumor would take over I know I wouldn't be freaking out over each and every test BUT I also would NOT experience the feeling of relief and happiness I did today.  I don't mind a few days of depressing thoughts to experience a high like I had today, a high that Jamie had today, that so many of my family and friends had today when they heard the scans looked good.  That is truly what life is about... highs, lows, being there for each other in the worst and best of times.  Life for the most part of boring filled with these peaks and valleys.  I feel we maybe have hit a few more of these valleys in the last few years than most but we have learned so much and I am so grateful.  When I got the boys home from summer camp I held Owen in my lap and hugged him. He has no idea what mommy is going through.  I hugged him and just thanked God for everything.  Then Owen looked at me and said "mom... i have something for you" and then he farted on me and ran away.  It was really the perfect reminder, my number #1 job is being a mom to my silly boys.  I can have some days of sadness but then I need to snap out of it and appreciate the two goof balls I get to spend my days with. Days are filled with lots of different emotions but you can't take anything to seriously, live life, have fun, love those around you, help those who need it, allow yourself sad days but really appreciate the good ones and the most important STAY POSITIVE!

  
I am off to bed!  Thanks again!





Sunday, August 3, 2014

My G.I. Jane Moment



So on Friday Jamie, Owen and Jacob were all going in for haircuts.  I have been thinking about shaving my head for awhile now and just haven't had the courage to do it.  I ALWAYS wear my wig, I wear it pretty much from the second I get out of bed until the second we turn off the lights at night.  I think I have posted one or two photos of my hair starting to grow back in but for those that haven't seen the photos...I would say that I lost about 80% of my hair after radiation.  Radiation kills off any fast growing cells which is great because it hopefully killed off any cancerous cells as they are fast growing but it also makes you loose your hair any place that you had radiation.  Just about my entire head received radiation.  So what I was left with was a patch of hair about an 1" x 1" on the very top front of my head (think really weird ugly bangs) and then the bottom of my head didn't receive radiation so I had the world's WORST mullet ever or best mullet.... guess it depends on how you look at it.  So I have just kept that hair because it was almost comforting just having that small bit of hair even though it was simply tucked into my wig all day, every day. 

Well that small bit of hair was just annoying.  I had to wash it and dry it since I couldn't put the wig on over wet hair.  Owen has still only seen me without my wig the one time  when we were robbed and the wig was knocked off when I was hit in the head.  So any time I want to shower I have to make sure it's after Owen goes to bed or that Jamie is home to make sure he doesn't come barging into the bathroom to see me.  We really contemplated telling Owen about my hair and letting him see it more openly but decided against it.  SO..... finally on Friday I made a quick decision that I would just go to the salon a few before the boys and have them just shave off what little hair I had.  That way I could shower and pretty much put my wig on instantly, it would be cooler without the extra hair under the wig and it can start growing back in and maybe in like a YEAR I will actually be able to just sport my real hair! 

I have heard LOTS of women say that when they shaved their head it felt great, they felt empowered, liberated, strong, brave....I just knew I wouldn't feel like that.  I knew that I wouldn't come out of there feeling like I wanted to yell from the rooftops "I did it, I am in charge, that was amazing".  That is probably a lot of the reason I hadn't shaved my head already. 
 I was totally right about how I thought I would feel.  As soon as I pulled off our road to head to the salon I started sobbing and couldn't stop.  Emily who cuts our entire families hair didn't even know I was coming!  So there I was in the lobby by myself crying.  I knew I could have someone come with me but I just didn't want anyone there with me. I felt like a dork for being so emotional and just wanted to get it over with.  So I stood there in the lobby staring at my phone while Emily finished up with her customer and then when she came to get me I lifted my head so she could see my pathetic face.  She asked what happened and I just tried as best as I could to get the words out "just shave it off before the boys get here".  So we walked into the salon, thankfully the only other people there was the salon owner and her sister and they quietly walked back to the hair washing stations as they knew was happening. 

I took off my wig which I have NEVER done outside of my room or bathroom unless at the doctor and Emily started cutting.  I stopped crying right when she started cutting/shaving.  It wasn't bad but I definitely did NOT feel like this was lifting me up or making me strong.  I felt kind of like.... "meh, this totally sucks...cut it fast so I can put my wig back on and let's PRAY my hair grows back quickly".  It seems so superficial.  With all that we have going on that I would even CARE about my hair, write a full blog post about my hair... but the truth is.. it IS a big deal.  Being FORCED to lose your hair by some stupid sickness you never wanted!  The hair that is growing back isn't like your normal hair either.  Some of it is coming in nicely, other areas that  received more radiation are coming in VERY thin.  There is a large bald spot and scar from brain surgery and another bald spot where the GPS was inserted in the back of my head during surgery. Hair will probably not grow back in these areas. It's not like, oh I just shaved my head and it will start growing back into a "cute pixie" cut.  It's a combination of shaved hair, bald spots, thin strange areas.  I just try not to look. 
When I wear my wig, I can feel normal, feel healthy, walk around and no one even knows... it's like my little secret.  But walking around with a shaved head full of scars from brain surgery.. it's like announcing to world and I just want to be like everyone else.  Have a normal day where no one thinks of me any differently.  That people see me as the same Alison that I was before all this non sense happened! 

I surely hope this post does not offend anyone, I know there are TONS of women that choose not to wear a wig the entire time and I think they are amazing too!  I think everyone copes with things differently, you do what you need to do to keep your sanity, keep your mind in a positive place... whatever it takes.  For me, I need the security blanket of my wig, it allows me to live life without constantly thinking about my health.  It's already on my mind all the time as it is.  Hopefully I won't need the wig forever but for now I do, and that's ok!

The second Emily was done shaving my head I put that wig right back on and haven't really even looked at my head since.  Thank you so much for all the love and support!  Jamie took me out for a nice dinner downtown on Friday and I had a few glasses of wine to help get me out of my funk.  :)  Snapped a few photos before we left.






Can't even tell I shaved my head can you?
(when you read the sentence above, does anyone else instantly think of the movie Christmas Vacation?
"Can't see the line can you Russ?")

Alright, I am off to bed.  Had a long tiring weekend.  Friday was super emotional but had so much fun yesterday photographing the wedding of Owen's speech therapist!  Such a fun day and I was so honored to be a part of Emily's day, she has done so much for Owen over the last two years and was the most BEAUTIFUL bride!

Special thanks to Emily R. for shaving my head.  Sorry for just SHOWING up!  Also thanks for making my three boys look so handsome!  Thanks to Lindsey for helping me with my wigs and a HUGE congrats to Jake and Emily! Wish I could come to Mexico with you.  :)


Sunday, July 27, 2014

Four Months Down!

I'm still here!!!! Four months of chemo DOWN!!!!




No I haven't fallen off the face of the earth!  I am still plugging along.  I finished my FOURTH month of chemo on the 18th of this month.  Hard to believe I already have four months done, hopefully just 8 more to go.  My weekly blood work has continued to look really good and for the last week or so I have felt fricking great!  Not sure if it's the weather, the fact that my kid are getting along better or what but I feel like the OLD Alison!!!!! 

I really think I have been handling all that has been thrown at me pretty well.  Since December I have undergone brain surgery, radiation, chemo, countless blood draws and MRIs but honestly I have felt pretty good.  I have been tired and kind of an emotional headcase but overall not too many complaints.  My biggest issue was just that I felt like my patience was so low and unfortunately the people to probably take the brunt of that is my two sweetie pies Owen and Jacob.  That has been my biggest hang up, having the energy to be the mom I want to be, trying not to snap when they don't listen or when they spill their milk after I asked them 10 times not to play around with their cup.  My #1 job is to be mom and I felt like I was running at 50-60% all the time and most nights I went to bed wishing I would have been more patient, more interactive, less angry with the kids.  BUT... in the last week or so out of nowhere I feel like the old me is back.  I have patience, I am dancing while making breakfast, being goofy and silly while we are at the grocery store, blasting the music in the car, letting Owen pick out 10 million stupid Super Hero books at bedtime and I read them all even though it's late.  It feels so good!  I hope it sticks!  I am really enjoying my days again.

Of course, with this sudden change I also start to question WHY I feel different.  Has the tumor grown?  Shrunk?  Is there a reason that I am feeling different, is it good, is it bad?  Just kind of annoying that all things lead back to this damn twinkie in my head.  Unfortunately that is just a part of life for us now.

Speaking of my head, did you notice my new wig in my dorky "selfie" photos above?  I love it.  She's named "Carley" and I am really loving the new look.  It is a little bit of a process getting used to the bangs and I am VERY annoyed with myself that everytime I say "bangs" or thing about the word I instantly start singing that stupid Ricky Martin song in my head "she bangs, she bangs and when she moves, she moves".  I think that was Ricky Martin right?  Thanks again Lindsey for suggesting this wig to me!!! 

The boys have kept my busy this summer.  Owen just turned 6 and Jacob just turned 2.  So hard to believe.  Owen has been so talkative lately and I LOVE it.  It's usually like pulling teeth to get him to talk but he has been so conversational lately.  Jacob is talking up a storm lately too.  He is talking in full sentences now and it's so fun to hear the two interact.  This morning, Jacob wanted Owen to come play outside and Owen was ignoring him and Jacob said "five minutes, okay Owen, deal?" to which Owen replied "just stop talking to me Jacob".  Brothers!  

Sorry I haven't posted much lately.  Life is so busy.  I have my next MRI on Tuesday, August 7th.. yikes that is less than 2 weeks away.  Praying it shows that this twinkie hasn't grown! 

Here are a few recent photos.  Hope everyone has a great week!





 








 Huge thanks to everyone for all the continued love and support!