Wednesday, May 24, 2017


May 2017 

Brain Cancer Awareness Month




It's been so long since I posted last, I barely knew how to log back into my blogger site.  Thankfully when I finally figured it all out, my computer remembered by password so I was able to log in and here I am.  I promised I would post sometime this month because it's Brain Cancer Awareness month and well.... I have brain cancer so that just seems logical. 

I was very active during my diagnosis and treatment with my blog, for some reason my blog really helped me process things and allowed me get things off my mind and was the best therapy to keep me in a good frame of mind. My nightly postings slowly turned to weekly posts which turned to monthly posts and then kind of stopped altogether.  Since it's brain cancer awareness month I decided to log back in and get a blog post up this month.  A post to update those that followed my journey and have asked how we are doing, to raise awareness and to reach anyone who was recently diagnosed and is just starting their battle.   


When I was first diagnosed, I searched the internet to get an idea of what was ahead of me.  I wanted to know just how bad radiation and chemo would be, how it would affect my family, how much help I would need, what life would look like after treatment, etc.  I found lots of articles and blogs from people that talked about diagnosis and what it was like to go through radiation and chemo but what I REALLY wanted and could not find was an update from someone who was a few years out of treatment.  I wanted to hear from someone that went through the treatments and was just living life. I wanted to see a person that was diagnosed 2, 3, 5 or even 10 years ago.  I wanted to hear how their experience was and what life was like for them now. I never really found that article that gave me hope and an idea of what lie would be like after the chaos of treatment settled down.  So I figured I would write one myself.  

If you were recently diagnosed or know someone who was, below is a quick summary of my journey and an idea of what life is like now.  If you were recently diagnosed or are currently undergoing treatment please read on and know you can do this.  You will make it through the surgery, through the radiation, through the chemo.  After diagnosis everything happens so quickly, it's honestly a blur for me but here I am 3-1/2 years later finally sitting down to think about and share my journey.  Here is a quick recap of my story and more importantly a look at my life AFTER treatment. 

 

I was diagnosed 3-1/2 years ago in December of 2013. I had no symptoms.  I woke up in the middle of the night, my left leg was numb, as I walked around my house trying to figure out what was wrong I got stuck walking in a circle in my bathroom.  I knew I was walking in a circle but I could not stop and walk to my bed.  I called for my husband, as he got into the bathroom I had a grand mal seizure.  He lowered me to the ground so he could get his phone to call 911.  I was taken via ambulance to the hospital where we were told I had a large brain tumor.  I was a perfectly healthy mom in my early 30's.  It was a shock.  I was immediately transferred Froedtert Medical College where I underwent a ton of imaging and was immediately prepped and went in for surgery.  My tumor was large, 2cm x 7cm x 3cm.  Many people are able to have their tumor mostly or completely removed during surgery. My tumor was NOT removed.  I think a lot of people assume my tumor was taken out during surgery or disappeared during radiation and chemo but that is not the case.  I am still walking around with this big tumor in my head.   The neurosurgeon would only remove the tumor if he was sure he could get at least 90% of it.  During the surgery he made the call that he did not think he would be able to get 90% and it would have been to risky.  I was young, healthy and had no symptoms so why poke around anymore than needed.  They took what they needed to get the biopsy and they basically closed my head back up.  Most people I read about were able to have most or all of their tumors removed so I was scared it wasn't the case with me.  So to anyone out there that has recently gone through surgery and is worried their tumor was not removed, have faith, I am right there with you.  It's strange to think that I am walking around with a big tumor up there but so far it's very well behaved.  :) 



Radiation and chemo were not as bad as I thought they would be.  There is absolutely no pain at all involved with radiation.  It's takes awhile to get you situated and your head in position and secured but the actual radiation takes about 20 seconds and it just sounds like you are next to a bug zapper. The machine turns off and you are done.  The radiation kills off all fast growing cells  which is the cancerous cells which is great but you also lose your hair.  They don't use radiation on your entire head so it will fall out in a weird pattern.  I think my hair started falling out about 2 weeks into radiation.  By week 3 and 4 I started getting pretty tired and fatigued but it was manageable.  I finished up my full 6 weeks and was given a short break to let my body try to recover and then we started the chemo.  



 Yikes... my hair was so crazy!  The radiation is so precise, look how straight the line at the back of my head is.  That is just how the hair naturally fell out. 

It was 12 full months of oral chemo.  Essentially I got 7 days of chemo and then 21 days off for a full year.  Chemo was exhausting, by day 2 or 3 of my 7 days of treatment I was TIRED.  I would wake up and get the boys to school and then sometimes sleep for 5 hours and get up in time to pick the boys up.  I was so thankful that I had such a great support system and an amazing husband that allowed me to rest while my body tried to get through it all.  During that year of chemo there was lots of MRI's, lots of bloodwork, lots of doctor appointments but  the year passed pretty quickly.  Although I was tired, it wasn't horrible.  I stayed pretty positive through out.

 chemo, chemo, chemo
Emotional blog about my last month of chemo
Chemo.... done!

My real struggles started AFTER I was done with treatment.  No one really warned me how hard it was to just try and be normal again.  During treatment you feel like a fighter, you are putting your body through hell but you know you are actively fighting this disease.  Once I was done, I still knew I had the large brain tumor.  Chemo did shrink it a little bit but it was still there.  It felt like now we were just kind of throwing our hands up and just waiting for it to grow again. That is not the case, we kicked that tumor's ass for 13-1/2 months and it's not like I could be on chemo for life, that would be terrible.  It just seemed eerily quiet.  I thought it would be nice to get back to "normal" life but I was not the same person.  After some gentle hints from Jamie I finally when in and talked with a therapist that reassured me everything I was feeling was totally normal.  She said some people really struggle mentally through diagnosis and treatment and some people are really positive and strong through diagnosis and treatment but then feel lost afterwards.  I obviously fit the second category.  So the year or two after treatment was a struggle.  Trying find myself again.  Trying to get back into a regular routine.  My life had revolved around chemo, doctor's appointments and exhaustion for so long.  Now I was just supposed to slide back into society. 

The last few years have been a journey.  I think I am finally coming to terms with the fact that I am NOT the same person as before but that is okay.  I was so hard on myself at first.  You always hear people say things like "this will make you appreciate every moment".  That is true but it also puts more pressure on you.  I am sure all mom's would agree you go to bed many nights wishing you had spent more time with your kids, not lost your temper, had more patience.  Now imagine feeling like that knowing you have cancer and having the added pressure of "what is wrong with you, you stared death in the face, YOU of all people should appreciate every moment".  Well after so long you just have to say f*ck it.  I went through some crappy stuff, yes I love and appreciate my life more than I did before but doesn't mean my world is now filled with rainbows and unicorn dust and that I have to be happy 100% of the time. I can still get annoyed when the boys are fighting all day, I can still say no to one more book at bedtime because I am exhausted and just need to veg on the couch for a minute, I can still say no to a get together because I just don't feel up to it.  I don't have to seize the day every single day, why did I feel so much pressure about that?   Why do I feel that I need to be an ever bigger and better person because I have cancer.  Sometimes I just want to be a regular, tired and disorganized.  I do want to live life to the fullest and enjoy every minute I just don't want the extra pressure of it because of a diagnosis.  I just want to be me.  





Another big challenge for me has been the fact that I feel like cancer took away a big part of who I am/was. I was an athlete my entire life.  I was always relatively in shape and fit and always had a bit of spunk in me.  I know people naturally change as they have kids and get older.  However, I feel a lot of my changes were caused by stupid cancer.  I gained almost 35lbs after my brain surgery from the steroids I had to take to reduce swelling in my brain so I did not have another seizure.  I think went through treatment for over a year that left me weak and tired.  Here I am 2 years after treatment and I am still struggling to run 3 miles.  I feel a little crazy while I am out for my runs, one minute I am thinking "it's okay, just slow down you have nothing to prove you've been through a lot" and the next minute I am thinking "come on, you can do this, push yourself, don't be a wimp, run harder".   I wish I would have tried to exercise more during treatment but I honestly don't think I could have, it literally took everything I had to just keep up with Owen and Jacob. 

The other big struggle for me is my memory and multitasking.  Jamie will be the first to tell you that multi-tasking was NEVER my strong suit but it's REALLY bad now.  Poor Jamie just picks up the slack and gets things done.  If it weren't so frustrating for me I would probably find it comical.  Just trying to pack for a weekend away or packing the car to go to Great America and having extra clothes, a picnic lunch, etc.  I am horrible at it.  I find myself walking circles trying to remember what I am supposed to be doing. 

SO back to the positive, as that was the reason for my post.  Something to give hope to someone just diagnosed with brain cancer.  Literally, it's 3-1/2 years later and my biggest complaints are being too critical of myself, not being as fit or energetic and basically being an airhead.  Not much to complain about at all.  I am sure lots of people feel these things and they are not dealing with cancer.  
Google told me statistically I would live for about 5 years after diagnosis.  Well guess what, it's been 3-1/2 and I can tell you with certainty I have many, many MANY more years ahead of me.  Yes, I am tired, yes I feel unorganized and dumb some days and yes I am not happy with how I look (did I mention the weird bald spots I STILL have on my head) BUT guess what, I am alive.  Not only am I alive but I am loving life.  I am not just surviving, depressingly trying to breath in every moment because I fear each day could be my last.  For the most part I don't even remember I have brain cancer.  I go about my day like any other person.  I grocery shop, take the boys to and from school, enjoy dates with my husband, fold laundry, dance in my car, help Owen with homework, plan fun trips with the family... I just get to live a normal life.  I did not expect that when I was diagnosed.  I never saw anyone out there just living a regular life who had brain cancer.  Most likely because they aren't some sickly looking person with a sign over their head that said "I have brain cancer".  They were just a regular active person....like me.  
So to anyone out there struggling or fearful.  Here I am, this is what brain cancer looks like for me.  













Have faith, be strong, YOU GOT THIS. 







Tuesday, April 5, 2016

MRI DAY

A day in the life of a cancer survivor
Photos by Jill Marzion Photography



 
MRI days are BIG days when you are a cancer survivor.  They are a chance for a huge sigh of relief when you get word there is no new signs of cancer and that everything looks "stable".  In my world "stable" is a pretty amazing word.  Stable means I can go back to living life without worrying for another one or two months depending on when my next MRI will be.  MRI days can also be the day you learn your cancer is back or progressing which is the last thing you want to hear.  So you walk into the cancer center that day knowing it will be good or bad, there is really no in between.  
I actually am a wreck about 4 or 5 days leading up to MRI days.  I am pretty good at living my every day life without thinking too often about my brain tumor.  As MRI day nears, I think more and more about my health, fears of getting bad news bounce around my head at random points of the day, I start losing my appetite, it's hard to stay focused or in the moment because my mind is all over the place.  Just about every time I have an MRI the day or two leading up to it I go into cleaning panic mode.  I still don't know why but Jamie and I always joke about it.  I can admit I am not the best at keeping our house super clean but before I leave for an MRI the house will be organized and spotless.  It's not something I consciously do but somehow it always ends up happening.  I think in all honestly it's because I fear I will get bad news and I just want to come home to cry and sulk in a clean house.  What a weird way to think....like I said, my mind is all over the place. 
I usually get little sleep the night before an MRI.  I generally wake up early to make sure I have enough time to shower and get ready without feeling rushed.  I want to feel healthy and in control when I walk in.  I can still remember my first time pulling into that parking garage.  It was pure fear, I was entering a CANCER building.  It was a reality, I would be one of thousands of sick people walking around the building that were trying to rid their bodies of cancer.

 

I can remember the fear as I pulled up the first day and pulled into the parking garage underneath, I grabbed a parking ticket, found a spot and walked into the building.  It didn't take long for me to realize the Cancer Center is AMAZING!!!!  When I pull into the garage now, I feel a sense of calm, like I am at home, as strange as that sounds.  I feel safe.  

 

 

Each floor is designated with an animal to help you remember which floor you parked on.  I always drive up to find a spot on the loon level because I just love the sound of the loons. 

 

 

When parking on ground level you walk into the main entrance and are greeted by the same woman.  EVERY single time I have been there she was behind the desk.  I don't know her name but she is always smiling and laughing.  It's the first impression you have upon arriving, a warm and welcoming face.  I have seen her giving directions to people that are lost, helping people arrange for rides home and just generally being a positive force for everyone who passes by.


My first stop is always at the lab.  I always check in with the same woman.  She's so sweet.  I always find myself looking at her hands.  They remind me of my grandma's hands, wrinkled and almost swollen looking, rings are so tight you would think they would be painful but the skin looks SO soft and delicate.  Every time I look at her hands I can see my Grandma T punching down dough for a loaf of homemade bread or cinnamon rolls.  
 
She always has a huge smile, verifies my birthday, what doctor I am seeing, who my husband is.  When she asks if I am employed, I tell her I am a mom she jokes every time that she is entering in an occupation like "executive homemaker" or "domestic engineer".  Then I take my seat in the waiting area until my name is called.  The blood draw is quick and I leave there with an IV placed and taped down to my arm for my MRI.  
 
 
 
 
 
 
 
Jamie and I then walk from the Cancer Center into Froedtert for the MRI.  Today it's in the lower level which is a long walk and then you have to find this weird hidden elevator where you go in on side but exist on the opposite side, I can finally find it without getting lost.  I check in at the desk and go to the MRI area where I change into my gown and robe.  
  
 
Policies changed just a few months back requiring everyone to wear a gown and robe.  I used to be able to go in with my clothes on as long as it had no metal so I would purposely wear yoga pants, a tee and a sports bra so I could wear my regular clothes into the machine.  I much preferred wearing my own clothes, I felt strong and healthy and the people working the machine had a sense of who you were.  
 
 
 
 
 
Now you just go in with the same robe and gown that every other person has to wear.  I have to remove my wedding ring and leave it in my locker which I also hate, like I am going in without Jamie.  Walking to the machine in my gown and robe always makes me feel sick and kind of scared, not myself, not a strong resilient woman but just a patient.  I am usually pleasantly surprised that even with the gown and robe, they usually still recognize me and immediately say "I remember you, I'll get you a warm blanket".  I always request a warm blanket.
 
 
 
I lay down on the machine, they put the big cage around my head and I usually make some sort of awkward joke or comment because that is just what I do when I am nervous.  They had me the ball to squeeze if I need anything and they all leave the room.  A few seconds pass and I head into the machine.
 
The actual MRI is about 45 minutes, I think.  Anyone that has been in an MRI machine knows how loud they are.  I always wish I could fall asleep but it's too noisy so I lay there without moving for the entire 45 minutes.  Sometimes my mind is in a good place and I think about upcoming events on our calendar, I think about planning a date night for Jamie and I, I think about fun things the boys and I will do this summer.  Sometimes my mind goes to a bad place, I wonder every time there is a pause in the imaging if they just saw something alarming on the scan and are calling to inform my oncologist.  Sometimes I want to cry and I am scared and alone.  I try my hardest not to cry but it happens once in awhile and it's the worst.  I can feel the tear forming in my eyes and I can't move so I can't wipe it away.  I feel it getting bigger and bigger and eventually it will start running down my cheek ever so slowly.  It tickles as the tears slowly make their way down my cheek before eventually going right into my ear. Now I have to sit the rest of the time trying to ignore the tickle in my ear while wondering if the MRI techs could see the tear and if they think I am some pathetic thing just stuck in this ginormous machine.   
 
 
 
 
I always ask them not to talk to me during the scan other than to tell me when the contrast will be shot into my IV.  This is the signal that I am almost done.  I can feel the ripple in my veins as the contrast enters.  It's about 5 minutes of scans and then they inform me the second round of contrast is coming.  Another scan starts and about 30 seconds later you feel the cold contrast zipping through your veins again.  This time you immediately get the taste of metal in your mouth.  About another minute and the machine turns off.  I slide out, they take the cage off my head and I hop off the table, get dressed and head back to the Cancer Center for my results.  
 
 
 
 
 
 
 
There is usually some down time before I can meet with Dr. Connelly.  I usually pop over and say hi to Maggie at Small Stones, grab lunch, check in with the boys and update family that I am done with the MRI.
 
 
 
 
Then we had over to the Dr. Connelly's check in area.  We pass by the Quality of Life desk and giggle at the little guys on the desk that dance in the sunlight.  There are always new ones depending on the season.
 
I love the walk to Dr. Connelly, the entire wall is windows and there is so much natural light.  We check in and wait to get called back.  Everyone there has a familiar face.  Nurses comment on how much my hair has grown since the last time they have seen me, I always consider working on the puzzle that is out on the table in the waiting area, sometimes I grab myself a hot chocolate.  
 
 
 
My name is called and I head back to get weighed, get in a room and have my temp and blood pressure taken.  Then Jamie and I sit in the room and wait.  
 
 
 
 
 
We try and pass the time with any sort of conversation we can think of to keep our mind busy.  Then we hear Dr. Connelly knock and we both hold our breath.  Thankfully every time she has walked in so far she has IMMEDIATELY said "everything looks great" as she is walking to her computer.  
 
 
 
 
So we can instantly breath again but we know the day could come that she will just silently walk in and sit down and give us different news.  We pray that is many MANY years down the road.  She then pulls up the scans from that day and we will compare it to my original scans from when I was first diagnosed.  We flip between scans and smile at how everything looks perfectly "stable". 
 
No growth, no changes, the tumor has not lit up with any of the contrast.  Dr. Connelly then does a quick evaluation of me. 
 
 
 
It's a brief meeting, we smile and Dr. Connelly tells us when we need to come back for another scan.  I am going every 3 months now, if my next scan looks stable we may be able to stretch it to 4 months.  We schedule our next visit before we leave and then we walk back into the waiting area and head back to our cars. 
 
 
We generally get a few steps away from the waiting area before Jamie and I grab hands and give each other a quick kiss.  Jamie always give me hand a little squeeze and says "I knew it would go well".  
 
 
 
We walk back to our car as we text our family to share the good news.  Then we pull out of the parking garage and try to get back to "normal" life until the next appointment. 

 
 

So there you have it, a day in the life of a gal battling a brain tumor.  One who is lucky to have a large army of supporters and a great team of doctors that make this journey bearable.  I GOT THIS.

 

A HUGE thanks to Jill Marzion who spent the day photographing this day for us.  She is amazing at what she does and has a true gift for capturing all the small details that truly tell your story.  

See more of Jill's work here:
http://www.jillmarzionphotography.com/