Meditating On Me

  

Often I think that people consider “meditating” as zoning out, as putting your mind to rest. But for me, I use it as a time to let all the things I have to be grateful for pass by in my mind as if watching floating clouds pass by on a day at the beach. Tonight, I kept thinking about how grateful I am for me. I know that probably sounds self-indulgent but that’s where my mind went. Throughout this experience, I’ve always wanted everyone to know just how grateful I was to every person that has helped me get here but in the end, I walked this path alone. I was the only one on the race trail– it was my journey. In many ways, I was alone. This feeling of isolation and loneliness could be construed as negative but I have come to look at it as a positive. I needed to truly be alone in something in my life… I needed to get through something so difficult, so emotionally and physically painful on my own. Yes, I had an absolutely incredible support system to which made my experience brighter, more fulfilled, more full of love, hugs and supported– but at the end of the day, I went through this every single minute of every single day. Others got to go home, take a rest, “get back to their life,” have a drink, go away for a few days to relax, get away from this all (as they all should have). But I could never fully feel 100% physically or emotionally away from the leukemia– it was always with me, always in the back of my mind- during the highs and lows and in betweens. And those feelings will  stay with me the rest of my life because this is still my journey. I’m still marching, I’m still learning. I’m still growing. I am so thankful that March 30th is tomorrow and my body will be able to stop receiving such harsh toxins but I believe that the journey I began on February 20, 2014 goes well beyond March 30, 2016. I’ll walk down this road for the rest of my life. As I should… 

I’ve grown on this road

 I’ve found love on this road

I’ve found myself on this road.  

    
    
 
 
    
    
    
         
    
    
    
   

        

   
    
    
   
   
    
    
    
    
 
   
    
    
 
   
    
    
 
   
    
    
    
    
      

    
  

 

  

  

  

  

  

   

        
   

  
 
   
 It’s been a long time coming, but the day is almost here. 

Tomorrow, tomorrow, I love you tomorrow. You’re only a day away.  

All my love & light,
Jessy

The Hike

Last weekend I was lucky enough to spend two days doing one thing and one thing only– taking time for me. I spent my 27th birthday weekend at a yoga/health & wellness facility in Lenox, MA where I did a lot of different activities but one that I did over and over again was write in my journal. I took it just about everywhere and wrote down whatever popped into my head. A lot of good stuff came out– stuff that means something to me and stuff that I want to share here on my blog. So tonight I’m starting where I ended. This is my story of my hike in the Berkshires. 

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The Ascent 

After a gentle yoga/Qi Quong class followed by an aromatherapy massage, I packed my car and got ready for my last little adventure — a guided hike. As I waited for the group to arrive and assemble, I began to feel like this wasn’t right for me. This is my trip— a time to be with my own thoughts and feelings and memories. I didn’t want to make small chat or slow down or speed up for anyone. I wanted this to be my last adventure at my own pace, with my music, my ability to stop and rest, take pictures, write and simply enjoy mother nature and all her goodness. So I grabbed a map of the trails surrounding Kripalu and chose to go to Monks Pond. I’ve been meditating like a modern day Monk all weekend and any option that puts me near water is a good one. So on my way I went. The trail has been really muddy as it’s 45 degrees in February. I feel so grateful as I only have yoga pants on, a long sleeve fleece and sunnies. I can breathe in crisp air but it’s not a stabbing that can come with deep winter colds. As I approach the pond, there looks to be an abandoned little shed and broken dock. But the water has frozen to a shimmery, star-dust blue— it’s breath taking. The sun is shining off and illuminating this frozen but alive body of water.

I look to my left and there’s a stunning stream that I can now see that runs all the way down the path I just marched up. Lucky for me, I’m all alone and no one is around so I’ve sat on a ledge next to the flowing water and am angled directly in the sunlight through the trees. The moving water is so calming and reinforces the fact that life goes on. It hits rocks, splashes up and down, freezes into sculptures at some places and runs wildly down others, crashes upon rocks and creates wade pools in others. But the water, this stream, it all continues to run together in a form that’s one. Each droplet of water essentially going to the same place— a bigger, greater, calmer body of water that is all one. I sit here on this rock and think about the stream I have gone down, all the water droplets that have given me the current I needed to keep flowing on. I feel as if I’m rounding the bend with this vast beautiful body of water that will await for me now in my current life but acts as just a foreshadow of the beautiful, completely blissful, full of love body of water that waits me, and all of us, one day.

For February 28, 2016, I can smell the new body of water coming… I can sense the sunshine beaming and I can feel the love all around me.

The Descent

Just as I sat there taking deep breaths and thinking calm and loving thoughts as the stream bubbled beside me, I slowly stood and decided it was time to head back. Almost instantaneously, I got excited— I got borderline panicky— like I needed to get back NOW. I knew that I had made it to where I wanted to go and now I was ready to come home. So I started picking up my pace— jogging, skipping, jumping over mud puddles but realized shortly that I wasn’t 100% sure where I was going. I was on a path— that was for sure— but I was alone, and I didn’t know which direction I was headed. All I knew was that I was walking and I was simply looking for the blue marks on the trees to tell me “it’s this way” “stay on the path.” Immediately, Dr. D and Dr. Mandy came into my head — the whole journey, I’ve been on a path, somewhat blindly putting my full trust into their guidance— sometimes no questions asked, simply looking toward the blue marker to say “go this way” or “turn down here.” Amidst this excitement, I began to skip again. More than anything I wanted to see the clearing. But I couldn’t. Not paying attention, I slipped and fell on ice and I could briefly hear my Dad say “slow it down Jess.” Then my favorite Florence & the Machine song came on — The Dog Days Are Over. That’s it! I thought. This is it— so I literally started dancing my way down the path with my gut knowing that I was coming to a clearing. I was right. But it was the same frozen Monks Pond I had started my “descent” on. 

Keep going— I could hear my mom say, “it’s just a little bit father.”

So I did just that and marched and marched, continuing on the path looking for all signs that pointed me “home” With two very muddy pink sneakers and a damp bum from falling, I made it to the Kripalu camp. Rested right above the hill overlooking the beautiful Berkshire mountains, the sun was just beginning to set. There were cars and people and buildings. Life is just like it was when I went into those woods, but I have a completely different perspective on the same view. 

I’m glad I didn’t go with the hiking guide and group. I needed to do this on my own. I needed to walk the path, stumble, get excited, get let down, and come to the beautiful clearing that I had hoped for, knowing that every ray of sunshine that beat down on my face was a family member reminding me they were here for me— every trail marker, a nurse or doctor letting me know I was doing okay — every breeze that tickled my face and made me laugh, a friend showing their support —  and the horizon at the end, my Michael, my love, I look at those mountains and see so many adventures to be had and memories to be made.

Today is February 28, 2016.

I am here.

I am now.

I am grateful.

I am proud.

I am hopeful.”

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Lots of love and light,

Jessy 

Two Years of Bubble Girl

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Two years ago this picture was taken. This was the first time that I had been able to see Leni since I was diagnosed. Truthfully, it was one of the happiest moments of my life.

A few days later and this picture was taken….

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was still severely neutropenic at that point which is why I had to wear a mask and gloves when she was around. This picture is such mix of emotions: I feel such love and warmth when I look at the two of us locking eyes. She is truly my little angel and I’m so grateful to have her as my Goddaughter. But it brings an emotion of sadness because I sit in bed two years later and feel like, although so much has changed, not much has changed at all. 

Since that picture… I cut my hair….

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Then I lost it all.

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But then slowly things started to turn around and I started getting fuzzies. Photo on 6-11-14 at 4.22 PM

it was time to fix my pancreas — with a full head of hair! PRAISE JESUS! IMG_5248

And then on January 12, 2015 I marched right back into the work force. I came back to the same desk I had left abruptly on February 20th 2014. IMG_5164

I even bought myself a new car to deal with all the winter snow– santa fe BEEP BEEP!IMG_5262

Then I started balding again which was no fun but I kept my “crow” cool and namasted on.IMG_4013

Then I went back to my old almamater and made a speech for the American Cancer Society’s Relay for Life. It was a moment that I’ll never forget.

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things were starting to feel like normal again. IMG_6602

I was even able to put my hair in a pony tail!!!!!!!!IMG_7118

I was getting stronger and doing things with friends. IMG_7912

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AND THEN THIS HAPPENED. IMG_9199

PUP. MOM. = Life changed forever. In the best way possible. IMG_9376

I’ve been feeling so much happiness. Like I’m finally in the right place at the right time. IMG_0377

But then three weeks ago happened and I was made into Bubble Girl again– not able to see anyone who hasn’t cleared themselves as very healthy and certainly no going into work or public places. Then I had a week that I got taken off the house arrest and I sighed a sense of relief knowing that my counts were going back up, they weren’t yet where they need to be for treatment, but they were in the right direction. THEN I go into clinic last Wednesday. Uh oh. My counts have dropped to lower than they were even before when I was put on house arrest. So not only am I told, no going into work or public until you’re back here next Wednesday but we’re most likely going to want to do a bone marrow biopsy to “make sure things are okay.” For the first time in a very long time, Dr. D had a very serious demeanor, he mentioned that he “just could not explain” why my counts would be doing something like this. We go over a few complicated possibilities but all my mind was registering is this is no good– this is not what I want to hear– this is exactly the  opposite of what i want to hear. Just moments before, i had been thoroughly concerned about my end date being pushed back another week, now i’m a terrified that something has come back. That the leukemia may be showing signs of recurring. As I say these things to Mike and other close family and friends, I am often shooshed and told “we can’t talk like that” but the reality is, that’s a possibility, as small as it may be, that could happen. I am trying so hard to stay positive. I have been burning essential oils day and night, trying to breathe in only good toxins, deep breathing, taking ativans when I get too worked up, looking up at the sky a lot more to remind myself how big this place is and how small I am, I feel like I’ve tried everything but the fact of the matter is is that this shit is absolutely horrifying. I cannot begin to go down the path that my mind takes when I think about the doctors telling me something I don’t want to hear, so I won’t go there… but I know, it’s a place I really really don’t want to be. I’m just so close.

Two years ago when that picture with my niece was taken, I told little Leni that in two years, Auntie was going to be all better– that’d I’d be able to play with her all the time, with no masks and no gloves. I want to make good on that promise.

If you have a free moment tonight or tomorrow, I would so appreciate if you kept me in your thoughts and prayers. If you just sent me good energy to harness to endure whatever is to come. May it be the expected path I’ve been on, or one that takes a turn. I am a warrior princess and I’ll be ready… just need some of my angels behind me to cheer me on. I know I ask of you all a lot so I hope it’s not “too much”– I just so believe in your positive energy and thoughts being the ones to heal me.

All my love and light,

Jessy

 

p.s. here is Leni last week breakin hearts for Valentine’s Day. Does it get any cuter?

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Tomorrow, Tomorrow, I’m Excited for You Tomorrow

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Tomorrow I go to the Dana. I go every Wednesday and I never look forward to it but tomorrow, tomorrow I’m excited. Weird to say that I’m excited to head to the hospital but I’m hoping that tomorrow is the start of a long stretch of pain coming to a close. I meet with my pancreatologist and hopefully get the all-clear to begin eating again. Now I know it won’t be an “eat whatever you want” conversation but even being able to have a fruit smoothie or grilled chicken breast will be such a big deal. Like I’ve said over and over, I’m so hungry. Hungry and beyond crazy with cravings. All I can think about is food…sandwiches, pizza, angel hair pasta, sushi. I’m a ways away from all that but a girl can dream. I also start on steroids tomorrow for five days which make me absolutely insane when it comes to eating. They make me so hungry and able to eat like a growing football player. So tomorrow as I meet with my doctor, I will be putting on my persuasive pants and begging him to allow me to start my journey back to the real world of food. Wish me luck.

Tomorrow also marks the restart of my chemo regimen. I’ve been paused for two months because of the pancreatitis but tomorrow I start it up again. It will feel good to restart as I have been worried to be off my planned track for this long…for obvious reasons. Chemo’s no fun but progress is. The start of this next round of chemo means I’m one step closer to getting my life back, one step closer to being cured. And those things are something to be excited about, really excited about.
XOXO,
Jessy

Foggy Days

Foggy. You can’t see clearly. You can’t think clearly. You can’t feel clearly. Just like with fog on an ocean dock, fog inhibits you from seeing what lies ahead of you.  And that’s how I feel. My whole being feels foggy. Unable to see the brightness of days that inevitably lie ahead. Bogged down by sadness and frustration; physical pain and exhaustion.

Last week was hard. Really hard. This week is better but still hard. It all seems like SO much. So overwhelming. So many medications, chemotherapy and brain radiation sure has a way of making you feel out of it, making you feel not you. And that’s exactly how I’ve felt, not myself. In a way, I feel disconnected to my own life. Like I am in somebody else’s crappy body. Somebody else’s negative mind. I’m a happy person. To my core, I’m happy. I love life. I love smiling. I love laughing. I genuinely enjoy being positive. I get excited over little things. And I love that. So when I feel unhappy, when I feel like it’s an effort to smile or to laugh or to get excited, it doesn’t feel like me. And that hurts. That’s a pain that no spinal tap can replicate.

As Mike and I were watching Father of the Bride 2 and Nina was just about to have the baby, she looked up at George Banks and said “Isn’t this just so amazing?” I instantly got emotional. Not because I was so moved by the film but because I felt so jealous of Nina. (she’s a character, I know.) But I felt so jealous that she was lying in a hospital bed, just like I had been all week, and that she got an incredible baby at the end of it. I want a baby, I thought. Because a baby is a miracle, a blessing. A baby truly is amazing. Now, don’t go all “omg she wants a baby?!?!?!” on me because clearly I don’t want a baby right this second but watching this character receive so much joy brought me a sense of sadness because that “amazing” feeling seems so far away. Sounds so dumpy, I know, but it’s how I felt.

But then I sit here, writing that paragraph out and I know in my heart it’s not true. It’s exactly how I felt. 100% truth. Whole-heartedly how I looked at that moment. But as I reread what I write, I know that although it’s sometimes so hard to remember that there’s an end to this race, that there’s a light to the end of this tunnel, I have faith that there will be brighter, happier, fog-free days ahead. In fact, those special, amazing moments, although they may not be as obvious or glamorous as some of life’s big moments, they’re still here. Despite it all, amazing things are still happening to me.

Like when a complete stranger came up to me at the Michael Buble concert on Friday and told me to be strong and that my hair would grow back more beautiful than ever. That she had “been there, done that” and that everything was going to be okay. That’s amazing. She doesn’t know me, she doesn’t know my story or my diagnosis but somehow this woman knew that I needed that little push last week. I needed to be reminded that this too shall pass. I needed a little miracle. And in that moment, my mind felt anything but foggy. It felt clear and precise and happy because I was meant to be there, finding comfort from a complete stranger. That was meant to happen to me. Now that, that’s amazing.

XOXO,

Jessy

p.s. Speaking of amazing, here are some pics from our family vacation on the Cape last week!

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