or what I like to think of it as purgatory. Yes, I’m alive and well, for the most part, but I’m not really living.  Each day is a struggle to not fall into a deep, dark depression.  I haven’t blogged in a couple months because I find it really hard right now to share these feelings and I don’t really want to get anyone down with a depressing post but such is life.  You see, I’ve been told many stories of people dying from transplant complications on day 28, day 60, day 83, day 276, etc. So, the fact that I’m still here is something to celebrate in itself.  I even said to my girlfriend yesterday it’s been ‘smooth sailing.’  Well, she said, I wouldn’t go that far.  And she’s right but these are the things I have to tell myself daily to keep afloat.  By all accounts if you text me how I’m doing, I’m great!  Having a good day! Still alive!  But what I want to say is I’m lonely, I’m fucking scared and all I want is to be a happy, healthy 28 year old worrying about my career or what I’m doing next weekend.  I thought my first round fighting cancer was going to be the hardest time of my life and I was wrong.  Even going through it this time around, if everything turns out a success, I’m afraid I’ll forever be waiting in fear for the next bomb to drop.

Just because I’m recovering from this transplant doesn’t mean life has stopped throwing me challenges, as if this wasn’t enough.  That’s the thing about pain, there is no ceiling for it.  There’s no limit that you can reach where it stops.  From being unable to do fertility preservation, to the transplant itself which was the most miserable experience, to graft vs. host disease and physical changes, to challenges with some of my relationships, to losing my beloved dog, I feel like I can’t catch a break.  But then I stop myself because it can still be worse.  That possibility weighs me down everyday.  It’s so hard to be positive when I’ve been positive for so long and have constantly been knocked on my ass.  Not only that, I see people dying every single day.  Just in the last month I’ve heard of 3 friends loved ones pass away suddenly. Just like that, gone.  I hate seeing peoples lives changed in an instant; a new pain in their heart that will stay for a long time to come.

There’s such an incredible amount of pressure and guilt I place on myself to be happy for another day. I’m trying so hard to be present and focus on today but really today is like groundhog day.  I’m still in the critical 100 day period (although so close to reaching it!!) where I’m on strict diet restrictions and need to avoid public places. I’ve become a paranoid, germaphobe since any bacteria or virus can be life threatening to my immature immune system. So my weeks include sleeping late since I can’t seem to get to bed before 2am, doctors’ appointments, walks in the park, trips to the grocery store and post office wearing mask and gloves which I hate, watching TV and movies, reading, journaling, meditating, yoga, some board games and puzzles and A LOT of thinking.  Dwelling would be a better word.  When someone is down you tell them to stay busy! Keep yourself distracted!  Well what if the only activities you could do were thought provoking?  What’s your advice then?  I do talk to my therapist but there’s not much someone can say that can really help my current circumstance.  I’m taking it day by day, hoping to avoid any complications and keep my eye on the prize.

I know I’ll get through this.  I do have moments of strength and happiness and ability to be grateful to be here and have an awesome support system.  I have goals that I want to accomplish, places to see and people to experience life with. I want to get married, have a family, experience professional and personal growth. But, I’m so scared I’ll never live long enough to experience any of that.  When your faced with mortality, and no, not in the ‘you could die on the highway on the way to work’ general sense of the word, but truly faced with it, it changes you as a person.  The grammar in that sentence sucks, but you get the point.  When you’ve been told  you have option A which may buy you 6 months, 2 years, 10 years we’re not really sure or you go with option B and you have maybe 6 months tops to live, it changes the way you think about everything.  The past, the present and the future.  You look back on your life with a fine tooth comb thinking of how differently you would’ve lived, your present sucks because your sick and fighting for your life and the future is terrifying.  On one hand, you think of how you’re going to change your life for the better and all the things you’re going to do and accomplish but then you also know that any day your world can come crashing down again with another diagnosis or a slew of other possible tragedies. With transplants, the data for each and every case is so unique that they can’t even give you a confident statistic of your prognosis. I’m so terrified that I made the wrong choice by doing it. What if I make it less than a year and spent it in recovery, in isolation from all the people who give me life and not able to be my true self. But I know for a fact if I would’ve chosen against the transplant, I would’ve gotten to month 4 and deeply regretted not trying.  Fight or flight comes in.  I chose to fight. I continue to fight each and everyday.

Mom does her best to keep me happy and moving but this all is too much for anyone to take on.  Having visitors light up my days but they’re only temporary.  They end up leaving and the reality of my situation is back in plain view.  Phone calls, letters, and gifts all help.  They all give me a smile but it’s still temporary.  I think I’m having such a hard time because I’ve done this all before.  I’ve lost my hair, lost my identity, been in isolation, stayed positive, recovered, gave back to the community, went back to work, drank less and exercised more.  None of it mattered in the end. I used to be the type of person who believed in silly superstitions that if you brought an umbrella, it wouldn’t rain. But the worst case scenario has happened, again, so now nothing is off limits in my mind.  I’m afraid I’ve lost a little bit of hope that it’ll be okay.  My faith has been tested too many times in the last 2 years.  I’m not sure I’ll ever have the positive carefree attitude I once did.

But, that’s the thing about hope and faith, it’s always there.  When you think you can’t face another second, somehow you just do.  I lie in bed for sometimes an hour in the morning just staring at the ceiling, not wanting to move. But I do anyway.  I may not go much further than the couch but I get out of bed.  To me, that’s a win.  That’s proving to myself each and everyday that I can muster the strength to move forward just one more day.  And each day, I’m one step closer to being healthy and home.  As humans we are resilient and we are fighters.  There are people every single day who won’t have that opportunity to get out of bed. Hell, there are people who don’t even have a bed or food and clean water and they continue to move forward.  Whenever I think I can’t take another second, it passes and I’m onto the next.  If I have to spend the next couple months just surviving by the second then that’s what I’ll do.  I look my depression and fear in the face everyday. I look the person in mirror, because it doesn’t look like me, and look in the eyes and know that I can do this.  When you think you can’t make it another day, another second, know that you can.  Know that the pain you feel or the fear or disappointment means that you’re alive.  You’re here another day.  It may be a shit day but it’s better than not having a day at all. I’m fighting to stay alive, I’m fighting to live another day for the chance to smile, the chance to spend it with someone I deeply care about, the chance to say I never gave up.  Even when it seems much easier to.  You don’t always have control on your circumstances but you can choose to push forward.

With the new year, everyone has crazy, and usually vain, resolutions about how they’re going to change this year.  I just ask that you not only live but thrive for those who are struggling, thrive for those who have less than, thrive for those who may not have much longer on this earth.  Life can always be worse and it will always be painful but you can’t enjoy true happiness if you never experience pain. There’s so much beauty in each day if you choose to see it.  Just today I went for my first solo walk through the park behind my apartment and pretty much cried the entire time like a crazy person but I also looked at how beautiful life can be.  Feeling the breeze hitting my tear soaked face, the strain in my legs from walking uphill, the bare trees and leaves on the ground, the cold air in my lungs with each deep breath.  It’s not all bad.  It’s actually quite beautiful.  It’s in these small, simple moments that it’s all worth it.  I have said before that I wouldn’t do the transplant again if I had to, but that’s a lie.  I would never give up and miss out on a single day in this crazy, beautiful, sometimes fucked up, life.

Happy New Year, world.  Hope you’re ready for me.

Xo

Kelly

This post is in honor of my dog Bumper – I know he would want me to be happy. Love you my little man.

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2 thoughts to “Life in Isolation

  • John C Weiman

    Hi Kelly,

    I completely understand. and you’re not alone…

    John

    Reply
  • Aaron Miner

    Kelly,

    You are an amazing writer, and extremely inspiring. I love and admire that you never stop fighting. Please keep it up!

    Loooove,
    Aaron

    Reply

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