Feet Back Under Me: Why Am I Still Counting??

For a year I wrote a blog entitled 365 Things To Smile About during a particularly difficult time a couple years ago.  It made sense to count as I wanted to post every day something that made me smile and pulled me out of my worries, frustrations and stress.  Before that I would have countdowns on calendars until I went on trips or countdowns to finish chemo.  It helped me get to a destination.  A concrete place in time.

Tonight I was thinking about what I was going to write and I actually felt stressed out!  Lol!  Which blew my mind as this blog is supposed to be a way for me to relax and an outlet.  It isn't a count down for anything.  Then I realized that right now, there is no more need for a count down to a better time in my life.  It's just life.  Sure, I am probably going to continue to set myself goals to meet because I always want to be doing more in my life.  But not frantic goals and not anything that requires a countdown.

Its real day to day life now.  And I will be honest...that feels a little scary.  I know that sounds odd but its true.  I have been going at such a pace since I was diagnosed.  I felt the only way I could get through things was in part through counting the days.  Putting another day BEHIND me.  Now, it's looking forward to the next day with a positive outlook.  Yes, I am going to have those scary doctors appointments still.  In fact, I have one this week.  But it isn't as scary now.    My imagination of course takes flight whenever I have to see a doctor.  I think we all have that experience.  But that is a different kind of scary.  

The scariness of day to day life with no need to count the days and put them behind me is because I dare to have real, honest hope again that I won't have to go back to putting days behind me.  I don't know how to explain it honestly other than I feel like if I can stop counting things I can start really living in the present with an optimistic eye to the future.  The fear was always getting a career or relationship and then having to leave them all.  Except, that isn't a part of my every day life anymore. So I am going to stop counting things unless it is an amazing countdown!  Like a countdown to adopting or a countdown to getting married.   Neither of which is on the horizon right now but...you never know!

So I am altering a little of this blog to stop counting the days and just living the days and writing my thoughts and experiences.  I feel like theses blog series kind of change with me.  Maybe some day I can look back and see a good progression and hopefully a good story too!

Feet Back Under Me Days 5 & 6: Desire, Adrenaline & Acceptance.

I feel like I often find myself thinking and saying the words "I use to..." and then insert activity afterwards.  One of those activities that has become frustrating when I want to take a long trip (or sometimes a short one!) is driving.  I have to back up and explain something first about my relationship with driving.

I was born with an eye condition called Ocular Albanisim.  Basically it is a mutated gene (hello X Men!  Just without the cool powers!) that affects my ability to create melanin and therefor stops my body from producing pigment.  Hence the pale skin that burns easily, the blue eyes that are hurt by bright light and the blonde hair that chemo gave a little more dash of red to.  It affects my eyes through nystagmus, stigmatism and reduced visual acuity.  My parents were told when I was a baby that I would be lucky to tell day from night.  Well, apparently God had other plans.  While acuity can improve in kids with albanisim up to about age 7 or 8, mine continued to improve into my teen years.  It fluctuates a line now and then depending on if I am in school or not and the amount of eye strain I have but with correction, it improved enough for me to be able to safely drive.

I will admit it took me a long time to trust myself since most of my life it was made painfully obvious to me that I didn't have the same vision as everyone around me.  My parents gave me everything I needed to succeed and always encouraged me to keep reaching and not let my vision be a reason to give up.  After a demoralizing experience at 16 with a bit of a jerk driving instructor who didn't like home schoolers or people with disabilities (I struck out twice!), I eventually got my license in my early twenties.  And my first car about a year later.  It took time but eventually I found myself driving back and forth from Virginia to Michigan.  I would hit the road in the evening and drive through the night along the turnpikes when the traffic was light.  That was about an 11 hour drive for me since I didn't have a lead foot and stopped for breaks.  But I did it without blinking.

After treatment I slowly started driving again and it took a while to build up my stamina.  Desire and adrenaline were two main things that got me places and through events for about a year or two after I finished chemo.  It still does today.  I guess the frustrating thing is even today, I have a max limit of about 3 hours driving time before my body and my eyes become too tired and I have to pull over for several hours of real rest.  And that drives me crazy!

I don't like limitations on myself.  My parents raised me to be independent and to find ways around what most people in this world would call limits.  And I always found ways.  And I suppose with driving a great deal of what keeps me going is desire to reach my destination and the adrenaline of the excitement of what is taking me to that destination.  But there is a third ingredient; acceptance.  And this is truly the hardest to put into the mix.  I have built up the stamina in my body to do my job which requires a great deal of driving but never more than an hour and a half or two hours tops one way.  Then I am out of the car and working with my clients and just pumped over the progress we make that the drive to the next client or back to the office isn't hard.  The difficult part where I have to stir in acceptance is when I make weekend or vacation plans.  A work week takes a toll on me now and come the weekend, I want to relax and have fun!  Which generally requires driving.  This is when desire and adrenaline have to be tempered by acceptance that maybe, just maybe, now and then I have to take a weekend off.  Or plan that weekend around the stamina my body has after a long week.

It 's one of those affects of everything I have gone through that will never be back to how it was before but I know I am not alone in those things in life.  It's frustrating that something cases my eyes and body to become tired so quickly in comparison to before.   Its frustrating that my brain won't recall words when I need it too more often than someone my age should be dealing with.  The short term memory moments are a treat too!  And lord help me, the hot flashes, cold flashes!  I am just grateful that the flash backs are not as often or as intense all the time.

But then I wake up to my alarm, head to work, drive to my first client of the day and look at all the beauty around me.  My three ingredients to deal with the after affects of chemo start to blend together; Desire to be at the work I do, adrenaline from helping my clients move forward and succeed and the acceptance that it's ok that my life isn't the same.  It's my life and I am blessed to have such a good life.  

Desire, adrenaline and acceptance...the often difficult but effective recipe I have cooked up over the past four years.  Give it a try and let me know what you think! :)

Feet Back Under Me Day 4: Tasting New Food!

How many of you fought constantly changing taste buds?  How many still do?  One of my frustrations are my taste buds!  What tasted good one day doesn’t the next. I have even gone from hating yogurt most of my life to loving it for a couple years and then from one bite to the next, I don’t like it again!!  Go figure!

One of the things I use to love doing is trying new foods from different countries.  Recently I had Korean food at a friends wedding and loved it!!  Then tonight I saw a place called Cafe Rustico and decided I would try Russian food for the first time!!  I was not dosappointed!  Lol!  I can’t remember the name of what I had  but it was three giant meatballs made of pork and beef in a cream sauce with a special hard and soft noodles around it!  Very, very good!!! Thank you taste buds for behaving tonight!  Hoping more delicious, new food is around the corner!  What are some of your favorite ethnic foods?!

Feet Back Under Me Day 3: Small Towns!

Having gone from a bustling city in the land of sun showers to a small, historic town has been so great!  One thing about it is just how close everything is sometimes.  I say "sometimes" because having to go over the pass to a bigger city to find stores like Best Buy or my personal favorite, JoAnn's Fabrics, is a necessity.  However, a good coffee shop, grocery store, quaint downtown, delicious restaurants and my own home are pretty much in about three or four miles of each other!

Tonight I had to swing downtown after work and worked briefly on finding an address.  I couldn't help but laugh that the address was a half a block search from where I parked on a cross street.  And as I found the address I was looking for I discovered my little town has a beautiful Jewish temple tucked into its streets.  I feel like I never know what I will find next!  As I wound my way through the narrow streets I realized that after only three and a half months, I am using my GPS less and less and almost never down town.

I love that I can walk from my church to the Amtrak station on the other side of down town in about five minutes or so, depending if I take the detour to get a coffee or not.  I don't really know people outside of work in this town yet but when I previously spent a half an hour walking in and out of shops on the main street, I was greeted with smiles and kindness and many welcomes when I said I had recently moved to town!  I want to get involved with my community here and get to know people  and be able to wave at people I see on the street and help out around town.  Corny, yes, but I haven't felt such a welcome and generous spirit in a community in a long time.  Cheers to small towns!  Can't wait to get to know it better!

Feet Back Under Me Day 2: Making Plans That Happen!

I am someone who likes to try a lot of things and explore.  BC (which will from now on represent "before cancer") I would get into my car and just drive and see where I would end up.  When I lived in Virginia before, this often took me to out of the way Battlefields to hike.  I loved doing this and I loved making plans with people or by myself to go to new places and old favorites.  I stopped doing that even after I got the energy back to drive longer than a half an hour without shaking from exhaustion.  I don't know why I stopped.

I wanted to do everything I use to do.  But for some reason there was a block.  I would sit on my bed when I was living in Florida telling myself that I was an hour away from the Atlantic Ocean and I needed to just book a hotel room and walk on the beach and explore the shops around there.  That I was only an hour or so from NASA and my love of all things space related was yelling at me to spend the $50 and go on a tour.  But I literally couldn't get myself to move!  Towards the end of my time down there I was finally able to admit that it was probably due to almost crippling depression.  I think the only thing that got me out of bed in the morning to go to work was because my love and excitement for the work I do was stronger than the depression.  Then the weekend would hit and often I would not get out of bed.  I tried to sound happy or talk about all these plans I had to explore the Sunshine State over the phone to friends and family.  And then I would hang up and roll over, saying that I would get up in a few minutes and do more than wander around the tiny 400 square feet I lived in.  That wasn't me.  I don't recognize that person.

Since coming up here I have made plans and hung out with friends and my hike on the mountain pass was my first step back to doing those things I use to do all the time.  It opened something inside me again.  Then yesterday I saw someone who I met when I did my internship.  She became a friend on my first day back then when she saw my port scar (which was pretty fresh from the port removal only a couple months before) and smiled so brightly and said "You had a port!"   and then gave me a big hug!  She was a survivor too and that was it, we were friends!  We had talked about going hiking when I moved up here last fall and I was still breaking out of the bad habit of saying I was going to do something and then rolling over, physically and metaphorically.  Yesterday I told her about my small hike on the pass.  We decided that come March we were going to do some marching on a hike!  And I know it is going to happen because that something that got closed off inside of me and ignored is opening again and I really and truly want to explore again and see what new places and things I can find!  Don't just make plans...make plans and then make them happen!  Here is to a hike with my friend next month and many, many more adventures with my friends and family or even just myself!

Here is a challenge to my fellow fighters and survivors and anyone else who wants to participate.  Big, small or in between, have an adventure and do something new and let me know what you do!  comment on the blog or post where you read this and challenge others as well.  Go to the movies, take a hike, explore a new town, start learning a language, take pictures of your life and make a book...anything!  Maybe if we share those plans with each other we can encourage each other to not roll over in bed and put it off.  We can encourage each other to keep walking (not running!) forward and living life!  Then maybe I can put all the adventures and plans into future blogs and share them around!!  On your mark, get set, GO!

Feet Back Under Me. Day 1: I Think I Can Stop Running

In looking back over the many blog posts I have written, and the truncated blog series I entitled "My New Normal" I saw something.  I saw myself running away from cancer.  And honestly, who wouldn't?  I don't think I fully realized how full tilt I was running until a little bit ago.  A few things just clicked.

I recently moved back home to Virginia from spending just over a year working in Florida.  I started a new job in the same field in a small town tucked away in the Blue Ridge.  I have been here for almost four months now.  Almost immediately after moving here, I felt this giant weight lift off my shoulders.  I felt like I was finally standing strait again.  For the first time in over a year I had all my belongings out of storage and around me.  I have a 2 bedroom townhouse where I feel like I can relax when I get home.  I actually think of it as home without flinching.  I feel like I can breath again.  I never fully realized or acknowledged just how suffocated and depressed I have felt over the past five years.  The first year fighting the cancer and then four years of running full tilt away from everything that could pull me backwards into that miserable, terrifying time in my life.  I decided I was going full steam ahead and nothing was going to get in my way.  I ran so fast and so hard, always moving the goal post as soon as I caught up with it.

One of the things that is helping me stop running was first and foremost, my realization that I was still running...even after finally getting home.  I found myself talking to my parents as I was skimming through the requirements to take the LSAT and looking into a local university's law school!  I had a logical reason for looking into this but after hanging up the phone from talking to my mom and dad I sat there looking at the webpage describing LSAT study groups in the area and wondered what on earth I was pushing myself so hard for again!  And then it started clicking with a comment my mom had made not too long before.

Something my friends and family have agreed on is just how happy I finally sound since moving back to Virginia.  My mom told me that it sounded like I finally had my feet back under me for the first time since before I was sick.  That I was finally where I wanted to be with my whole heart and doing what I love doing every day.  And thus my most recent corny blog title was born!  And I started putting things together.  That I had been running for so long from what happened to me that I instinctively grabbed on to things that would keep that break neck momentum going, like taking the LSATs!

It finally all clicked into place the other week when I went on a hike around the top of a pass.  There was an opening at the top that looked out over several ridges of mountains tinted in the many hues of blues and grays that color the Blue Ridge and give it it's name.  I stood there, just letting the gentle, quiet sounds of the wind in the pine trees and the breathtaking view just wash over me.  And in that quiet, peaceful moment, I realized I didn't have to run anymore.  That I had beat my cancer over four years ago now and couldn't spend my whole life running away from it.

I have told myself countless times that I just wanted to live my life full and happy.  And I know I had those moments over the past years.  But always, always was this urgency inside me to keep moving forward!  To keep pushing myself!  To not slow down or that terrifying beast that I KO'd was going to get up off the matt and come after me again.  I think that fear is always going to be in the back of my mind.  But that doesn't mean I have to keep running...it means I should slow down and keep on living.  Stop planning every small move and thinking I can't move forward unless things go a certain way.

And so, I am going to try very hard to make myself slow down.  To keep my feet under me and walk through my life, however long it is, and make sure that I always find things to smile about and do what I can to help others and help myself.

So, I thought I would go back to my first love again, writing.  Each day talk about the things I am doing to live my life and move through the world and be happy.  Look back and see how I can draw lessons to help me stay walking instead of sprinting.  Maybe find a way to deal with everything that was a consequence of the cancer and not let it overwhelm me so much.  I don't know.  I feel like this series will evolve on it's own but the title will be a daily reminder to me for the next year that I am ok and don't need to run anymore.  And hopefully, now that I have stopped running, I will have more and more of those times like at the top of the mountain pass where I let that peace and happiness just be a part of me.  Instead of pushing and pushing myself towards one goal and another and another without looking over my shoulder, I will try to just let life happen, and enjoy what comes along the way this year.  Care to join me?

My New Normal Days 74, 75, & 76. Scared.

The past few days I have been struggling with something I have to do.  Part of getting my new job is also getting new health insurance.  And part of moving to another state is getting all new doctors.  I considered trying to stay with my doctors I had previously if they took my insurance but that is a lot of traveling back and forth and sending of scans and records back and forth.  And taking time off of work.   And that could get pricey.  As much as I don't want to leave my oncologist, I know it just makes more financial sense and is easier.  But it is also harder.

Tonight I finally sat down and forced myself to get online and start looking into my options down here.  I will freely admit that I called my mom to help get me jump started into doing this.  And I also admit that I was fighting a loosing battle to keep back the tears and anxiety and overwhelming fear that started to fight for top billing inside me!

As I started scrolling through the doctor's names on the screen, trying to decide which direction to go since I couldn't find the one doctor that had been recommended by a nurse down here.  Finally I just went to the website for the Florida Cancer center here in Orlando and sent a request for contact form in.  And I was shaking pretty hard as I did it too.

Three years later and just the thought of starting this process is overwhelming.  I can feel every mile between me and the people I love and wish were here with me.  Even my brothers who are only a couple hours away.  Because this is the first time I have had to tackle this alone.  No one to turn to and hug after I hit send.  No one I can just sit next to and feel them next to me and just let it all sink in that I can't pretend it isn't still happening anymore.

I just have to vent for a second and say...THIS ISN'T FAIR!  THIS COMPLETELY SUCKS!  I shouldn't have to be worrying about this.  I shouldn't have to be scared or anxious.  It's times like this where I feel overwhelmingly angry at everything I have to do and everything I have lost!  Of all the children I'll never get to have because of this stupid, horrible thing.  And it's just not fair!

I know I try to be upbeat and positive in these blog posts but for right now, for this post, I'm just angry and hurt and anxious and scared.  I know the chances of getting a bad result when I finally have all my tests is a low percentage.   But so were the odds of me having this cancer in the first place and then having it move to another organ.  I know people want to hold me up and say all the words that are supposed to make a person feel better.  But sometimes those words can't make it through.

And now I am going to take a deep breath and wipe my face dry and curl up in bed with Netflix and remember that tomorrow I get to go do work that always brings a smile to my face.  I get to see the client's I work with and laugh with them and talk with them and encourage them and try to be there for them when they are having bad days too.  And I am determined to not let anything happen that will stop me from doing this work.  I'm going back to being positive and upbeat now.  But thank you for letting me break down a little on here.