Thursday, November 2, 2017

Cancer Camp

A recap of my week away at "cancer camp"

I started writing this blog post immediately after returning from Montana but never got around to finalizing it.  Better late than never.  It was hard transitioning back to everyday life after my week in Montana but I wanted to be sure to blog about it so I could go back and relive it whenever I needed to escape and although I haven't posted anything on my blog lately, I am here to share my First Descents experience.  Hopefully I can express what my week in Montana meant to me and how magical it was.  (sorry in advance it's a long one.  If you hate reading just scroll down for the photos) So here it goes....

For those of you that don't know the backstory, I heard of an organization called First Descents from a friend who was also diagnosed with brain cancer.  First Descents is an unbelievable organization that provides cancer survivors adventures to climb, paddle, and surf past their diagnosis, reclaim their lives and connect with other cancer survivors who are doing the same.  My friend attended a rock climbing trip a few years ago and told me how amazing the experience was and encouraged me to apply.  

I went into the experience a little unsure.  I signed up for a week of whitewater kayaking in Montana at the end of August.  I knew I would be spending the week with about 15 other cancer survivors all aged 18-39.  I knew we would spend the entire week together in a beautiful lodge just off the river and would spend our days whitewater kayaking.  I knew there would be chefs, a photographer, camp mom and dad, a nurse and kayaking instructors.  What I didn't know was how quickly a group of strangers could bond and how strong and powerful that bond and friendship could become over a week.  Although we were all a little tentative and unsure at the start it didn't take us long to come out of our shells.  

Everyone flew in on Sunday and first thing Monday morning we met the amazing group of guides that would be with us the entire week.  They got us set up with all the gear we would need for our time on the river.  We were given life jackets, helmets, shoes, kayaking skirts, a paddle and our kayaks.  After getting our gear we walked back to the lodge to watch the eclipse together.  Pretty sweet start to our week together, sharing glasses and welding masks and being in an area with 93% totality.  We were out on the river that first afternoon.  Everyone in the group was given a nickname which was written on a piece of tape on the front of their helmet. No one used their real name the entire week, we did not even know anyone's real name.  So as I sat in my kayak on the beach at our lodge for the first time I was getting ready to head into the river with a group of fellow cancer survivors named Train Wreck, Token, Bee Keeper, Traveler, Quest just to name a few.  When everyone was situated,  we made our way into the river and slowly made our way towards a small cove just down the river to learn the basics of whitewater kayaking.  The first lesson was what to do if/when our kayaks flipped while out on the river.  Our guides stressed to us the importance of staying calm under water.  As beginners your basically have two options, pull the tab on the front of your kayaking skirt and wiggle your way out of the kayak OR remain calm, tuck your head and knock on the top of your kayak and wait for a guide to come and flip you up.  The thought of just hanging out under water hugging your kayak and waiting was pretty terrifying.  After listening and watching the guides demonstrations it was our turn to practice.  We practiced getting flipped, staying calm, holding our breath, getting comfortable under the water.

While I was taking in all the information they were throwing at us I was also looking around me at the group of complete strangers I was with. I look to my right and I saw someone struggling as the guide was getting ready to flip her kayak.  As I watch more I see her name written on her helmet, is was Traveler.  She had a look of sheer panic on her face and tears rolling down her cheeks.  She was repeating "I can't do this, I can't do this" as she was terrified of being flipped under water.  As I watched, she suddenly composed herself, stand up straight and gave the guide the okay to flip her kayak, the guide flipped the kayak and Traveler disappeared below the water.  I watch as she popsped back up, she threw her arms in the air and had the biggest smile on her face.  She immediately took a breath and told the guide to flip her again.  My eyes filled with tears.  I was crying watching a complete stranger bravely conquer a fear, it was so inspiring to see.  In all honestly, that first day related back to our cancer diagnosis.  When we were diagnoses we were thrown into the unknown "cancer" world, surrounded by people (doctor's, nurses) we didn't know, new terminology was being thrown at us, we were forced go through treatments and surgeries that were frightening.  But there was no turning back... we had to put faith in those around us, put on our brave face and conquer.  This was essentially the same thing we did our first day on the first day on the river. It was at that moment, watching Traveler fight through her tears and panic in our first hour on the river that I realized how special this week was going to be.  

I could go on and on about the actual format of the trip and what we did each day but I want to focus more on the IMPACT the trip made on me.  There was never a formal sit down where we were forced to talk about what type of cancer we had.  There was simply a quiet bond within us all, knowing everyone there was a cancer survivor.  We definitely did talk about cancer and learned what type everyone had, we talked about treatment, side effects, what we hated, what we learned, how our lives had changes because of cancer.  Sometimes these talks happened late at night while we laid in our in our beds, sometimes they happened during calm parts of the river, sometimes they happened over morning coffee or during the evening campfire circle.  We had people who have been battling for nearly 20 years all the way to someone who just finished chemo a few days before leaving for our trip.  

Each story was unique.  Everyone had something to contribute.  Everyone had a different perspective.  Our lead staff Konvict and Maybe created such a safe and welcoming space.  I am crying right now thinking about them.  They were there when we needed them and also knew when to sit back and let the bonds form without their leadership or guidance.  Konvict was possibly the most caring person I have ever met.  He went out of his way to talk with everyone and would listen and be fully present in every single conversation.  There were many times on the river when I got nervous approaching some rapids but I would see Konvict in his blue kayak in the middle of the rapids and I just went for it.  I felt so safe and brave because he was out there.  There was just something about Konvict that was so endearing, he would give you the shirt off his back or in my case his hammock off the porch.  Maybe was our other lead staff and I have never met anyone like her.  She was so down to earth and goofy and is probably the most charismatic person on earth.  Her personality just draws you in and I am SO sad I don't get to see her everyday for the rest of my life.  She was there if you needed a shoulder to cry on, she was always ready to dance and be silly and was such a calming and supportive force through out the week.  I will never forget her talking to Bee Keeper on our last day on the river.  Bee was questioning if she could finish the day and Maybe saw her struggling and sat down next to her.  Maybe spoke to Bee, calmy and reassuringly letting her know we would all be there for her, she was so soothing and encouraging.  Bee finished the day with the group out on the river and I know Maybe's words had a big part in that.  

The guides from Tarkio Outfitters were just as great as Konvict and Maybe.  They showed up everyday with huge smiles and ready to deal with the giant shit show that our crew was.  :)  I can not say enough positive words about this group.  We would approach a big rapid and everyone would be  anxious and nervous but we would look ahead and see all the guides out there watching the entire group and it allowed all us to forget about life, forget about cancer and forget our fears and just go for it when the rapids came.  Seeing their faces and hearing their voices made me feel so safe and calm.  I definitely flipped a few times.  On day one, I said there was no way I would be waiting for them to come and flip my kayak. If I flipped I was pulling that tab and getting myself above water asap.  BUT when the time came and I did flip, I was calm, had complete faith in our guides and sure enough after a few seconds I was flipped upright and back on my way down the river.  Cousin It, Juice, Skinny Hips, Dishes and Mr. Cuddles do this for a living, teaching groups to kayak.  The fact that they choose to spend the week with a group of cancer survivors says a lot about what kind of people they are.  They not only taught us to kayak but they really connected with us.  They learned about our struggles, they stayed and ate dinner with us, they led morning yoga when asked, they laughed with us and gave hugs when we cried.  I am so thankful there are people like them in the world.  All of them truly inspired me to be a better person.

Then we had our amazing chef's Kinja and Ratatouille.  They literally cooked from sun up to sun down.  They kept us fed and energized for the entire week while teaching us about eating healthier. Never in my life have I returned home from a week long vacation having LOST weight but the combination of their yummy healthy meals and non-stop kayaking had me a few pounds lighter when I got home.  We also had Zill our wonderful volunteer nurse who made sure everyone was healthy and was right there whenever anyone needed anything.  She was a TON of fun on the river to.  Chizzel was our photographer for the week and we definitely hit the jackpot with him.  He was unbelievable and worked so hard all week.  He was with us every minute on the river capturing all the amazing shots so we could share this experience with friends and family.  Each night we would be so exhausted from being on the river all day and while we got snuggled up in our beds to get rest, Chizzel stayed awake editing photos from the day and working on a video so it would all be ready for us to view together on our last day.  He volunteered an entire week away from his family to come hang out with a bunch of strangers and bust his butt all week simply because he is an amazing human being.  He even brought his mom and dad.  Shorty and Munk were the house mom and dad and they were ADORABLE.  They worked so hard, gave us so many laughs and were such a great example of love.  We even got to help them celebrate their 49th wedding anniversary during the week.  I will never forget Shorty's spunk.  

So how do you sum up a week like that?  I don't know.  I am sad because I know it was a once in a lifetime opportunity and happy because I was fortunate enough to be able to connect with some amazing people.  It sounds so cheesy to say but I felt so alive while I was there, like I could take on the world.  I was conquering the rapids, learning to eddie out without instantly flipping or getting thrown in the wrong direction on the river, I was sleeping outside on a beach, sleeping beneath the stars in a hammock, dancing and truly not caring how dorky I looked.  It was being supported and encouraged, not being judged, not worrying about cancer, it was laughing, it was crying, it was learning to live like I used to before cancer.  The best part was that while I was experiencing that I could look around and see everyone else experiencing the exact same thing.  Reclaiming our passion for life.  So many people think when you go through something like cancer you learn to appreciate the little things, cherish everyday and we definitely do learn that.  What sometimes people don't understand especially when we have finished our treatment years ago, is that we are still run down, worried, exhausted, still suffering side effects from treatments or long term meds we are now on.  Our bodies are not the same, our minds are not the same, no matter how hard it is to admit we are different.  Different in ways that take some getting used to but also different in positive ways.  But we all had this one magical week together to escape the "real world" for just a moment.  To live without the weight of cancer in our life.  I was reminded how fun it was to be spontaneous, how it was okay to be vulnerable, how it's okay to just leave worry behind and try something new.  

Since I finished treatment 3 years I sometimes forget what a beating my body took.  I get disappointed or embarrassed in myself when I still need to nap, when I don't have the energy to run like I used to, when I can't go non-stop all summer with my boys and need to have a few quiet rest days during the week.  At Tarkio, there were survivors who had just recently been through chemo and radiation.  Seeing them was a reminder of what a beating my body underwent and a gentle reminder that it's okay that I am not 100% and maybe never will be.  I also met people who were getting close to being a 20 year survivor.  So unbelievable to hear their stories and see some of the struggles and challenges they have been through but also inspiring to see where they are at in their lives and how happy, strong and resilient they are.  Definite proof that although I will still have bumps in the road ahead I will surely be able to make my way through them.

One of the other topics I was able to talk about was my struggle with guilt feeling.  I said numerous times that I wish Jamie could have been on this trip.  He deserved it a million times more than me.  He had to take care of me, pick up the slack when I have no energy, continue to work full time, worry about making sure we have good insurance, he had to watch me go through everything, watch me battle depression, sit back while I withdrew from everyone, learn when to let me be and when he really needed to step in to help me.  I sometimes feel like I am a burden on him, he gives me WAY more that I could ever give in return.  I know Jamie 100% disagrees with this and I don't mention it to him often but it was nice to be able to talk about these feelings with other people who felt the same.  Although we didn't stumble upon some magic potion to erase these feelings it's nice to know other people are going through similar feelings.  Being surrounded by people who truly understood your feelings and thoughts was such a gift.

If I was happy, there was people to laugh with. When I was sad,  there was people to cry with.  When I was scared, there were people to cheer me on.  I was also able to be there to help other people when they were struggling.  By no means was it all cancer talk either.  We laughed non-stop.  We laughed about how a group of strangers came together and spent every minute of every day for an entire week and there was no drama, no fighting, no one was ever annoyed.  None of us could believe how quickly we bonded.  A certain someone summed up the feeling perfectly one evening by stating how she had called home and started sobbing over the phone talking about how amazing everyone was, she told us she was not expecting to be the crying kid at cancer camp but here she was crying in front of everyone.  Then she paused and said "and I don't even fucking know you people".  It was the absolute truth and we all just about died laughing.

We left the week with new friends, a new mind set, a love for Montana and EVERYONE that was there to make the week so special.  Everyone was going back to real life.  Some were returning to work the next day, some where moving into college for their freshman year, some were heading home to prepare for a mastectomy.  No matter what we were going home to, we knew we would always have a special bond and a forever support system.  

So to Maybe, Konvict, Chizzel, Ratatouille, Kinja, Munk, Shorty, Zill, Mr. Cuddles, Juice, Dishes, Cousin It and Skinny Hips - Thank you so much for being a part of this.  Thanks for making us feel safe, thank you for being the patient and caring people that you are.  This week would not have been as magical as it was without you guiding us every step of the way.   

To Quest, Traveler, Trainwreck, Giggles, Baby Mouse, Bee, Enigma, Rogue, Token, Cherry, Phoenix, CB and Spooky - Thank you for being the awesome bad ass people that you are.  Cancer is so random, it doesn't care about the color of your skin, what you eat, how much you exercise, how old you are... there was only one thing that we ALL had in common and that was that we are all BADASS WARRIORS.  Cancer does not pick on the weak.  Cancer only chooses badass warriors.

Throughout the week I was trying to finish reading a book I had started shortly before the trip. I finally finished it on my flight home to Milwaukee.  One of the last paragraphs had the following Sentence:

"You can jump so much higher when you have someplace safe to fall."

It made me start crying all over again, it was the perfect summary of our week.  I think we all found a sense of safety with each other.  I knew as we returned back to reality, we would ALL jump a little higher in all aspects of our lives because we had each other as safety nets.

If you made it through this extremely LONG post, go grab a beer or glass of wine, that was a lot to read.  Below are some photos from the week.  Huge thanks to Chizzel for the photos.

If you are a Cancer Survivor age 18-39, check out First Descents.  Click the link below to read more and sign up for your own adventure next summer.

I spent a few nights under the amazing stars.  One night on the beach and two nights in a hammock. I miss my nights in the hammock all snuggled up.  It would be nearly 90 during the day but drop down to the low 50's in evening.  Only my eyes would be exposed in the hammock and it was AMAZING.

I feel so blessed to have met everyone during my week in Montana.

Not a bad view for dinner every night.

The bunk house and hammock I slept in.

 So glad we took these in front of the garbage cans.  Oops.

We got to spend one day in different types of kayaks and rafts.  Lots of laughing with Giggles as we tag teamed the rapids in our inflatable raft. 

LOVED being out on the river.

Learning the self rescue technique.

I miss the scenery.

And I will leave you with this one last photo that sums up the week.

This was hands down the most life changing week. 



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 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.