A Moment In Time Reminds

I’ve been looking through a lot of old pictures and videos today. I have tons of these videos, me by myself, talking about the day. This one struck me because I watch this and know how hard it was. I am so excited to #nuketheleuk but I think processing what a difficult journey this has been for me, helps me heal.

I’ve come a long way since this day, buzzed head sitting alone, looking out the window but these raw moments were the reality of my days. Not each one cheery or inspiring. 

On a brighter note, i got my second to last treatment today. Friday is the bone marrow biopsy and one week from tonight I will be a cancer treatment graduate. 

All my love & light, 

Jessy

See Ya Later Roid Rage

 Today this is my life…

I’m working from home because of the snow. I’m bundled in head-to-toe fleece and felt like I needed to take the opportunity to document the LAST TIME I HAVE TO TAKE STERIODS.

I have been on all levels of steroids since the second day after I got to the hospital in 2014- before we even knew what type of leukemia I had and could begin my treatment regimine. They’ve had me on all sorts of highs & lows. Eating like a football player, being hyper focused on cleaning and organizing, bloating of my face and body, making my body so sore to the touch, they’ve made me manic and then when I come off them I’ve gotten so low and bordered on depression. They’ve kept me up too many times to count, like way way way too many times to count. And they’ve kept Mike up almost every day that I’m on them because I literally cannot stop talking the second we turn off the lights. 

I have hated what these damn pills do to my body but even more so what they do to my mind so today I am ELATED to say that I should never have to take Dexamethasone ever again in my life.

HALLE- EFFING- LUJAH 

Back to work. 

Lots of love & light,

Jessy 

Steroids Have Me Like WOAH

It seems only fitting that my last round of steroids, after literally too many rounds to count, would hit me SO hard. I literally had six emails from myself this morning when I got to work, all which I had sent from about 1130-1am last night as I could not get my mind to shut off. And today, I just couldn’t stop. Couldn’t stop talking. Couldn’t stop thinking. Couldn’t stop step marching on my way home. Just couldn’t stop. I wish leukemia had a visual bunching bag so I could just destroy it right now. I am so amped up it’s incredible. These steroids are so powerful though it’s just crazy to think about — I go from such extremes highs to such lows when I come off of them. They mentally and physically affect me beyond what I can explain. They have pretty much been the bane of my existence for the past 2 years so I am SOOOOO EFFING EXCITED FOR IT TO BE DONE. LIKE AHHHHHHHHHHH!!!! Three days from now I’ll take my last dose of steriods, hopefully, EVER!!!! Anyways, to be able to remind myself of the CRAZY that comes with the high days– I recorderded this video that I thought I’d share. I look crazy but that’s how I feel right now. I hope it makes you laugh. #NEUKTHELUKE BETCHES!

 Happy Friday everyone– enjoy all the bliss of your weekends!

Lots of love & light,

Jessy

Slainte 

  
Two years ago today, I crossed off the final mark on my “days down” whiteboard. I had started it during my first stint at the hospital after being diagnosed as I wanted to remind myself of the number of days I had been “locked up.” Then with a little Irish luck on my side, my counts crossed over the mark we were waiting for and I was released from the Brigham on St. Patrick’s Day 2014. Mike drove me home with my parents behind us and we celebrated with a pizza and salad from Reginas Pizzeria- my absolute favorite. I remember walking in that door with Mike, having left my house the morning of Februrary 20th just a normal day at work and hadn’t been back since. I was home. I didn’t cry when I walked in, I simply smiled. I felt so much pure joy to be in my house again. As Mike had stayed with me every night in the hospital, he too had not laid on our bed for almost a month. So we did. We jumped in our bed and just laid there together, so thankful that we were home. So grateful that God had granted me a second chance and that I was able to lay there beside him. We cuddled, and took in the moment before my parents came in with pizza. It was a moment I will never, ever forget. 

Today, I have 12 days left to go until I cross off my final “day” as a leukemia patient in active treatment. Two weeks from today, I will no longer be an “active” patient. My treatment plan will be over and I’ll be a patient in remission that has to go to the Dana for check-ups every 6 weeks- that’s it. And that’s incredible. 

I can’t believe it. I’ve decided I’m never erasing the top part of this board- it means too much. It brings back a lot of memories and it reminds me that as long and hard as the race looks originally, with a little resilience and a lot of faith, you can get thru just about anything.

#neuktheluke final campaign has officially begun. 

Lots of love & light,

Jessy 

The First of the Lasts

Today was one I’ll never forget. 

Today I had my first cry of the “series.” Only 2 episodes left of this series of my life. The series finale comes two weeks from now. There will likely be a lot of excitement and hoopla. Mike will be with me and so will my parents. Two weeks from today, my veins will take their last push of chemotherapy and my body will be full of toxins one last time. But today is today and today was, in a way, was just as exciting. For a year now, I’ve lived in 3 week cycles. And so today was the first of the lasts. It was was week 1 and therefore I had my final meeting with my oncology team- Dr. D, Dr. Mandy and me. There have been so many people that have gotten me through this journey but at the heart of this machine, it’s been the three of us. So it was so special to me to get to be with them, review my labs together, laugh with them, reminisce a bit, and then, OF COURSE, make them take a selfie.   

While we were taking this picture, it hit me how exciting this moment was. How I’ve waited over two years to begin the goodbyes. I began jumping up and down and clapping my hands, I was overcome with the feeling of “ahhhhhhh!!!!!!!! This is real!!!” I hugged Dr. D and he walked out of the room. Then, I instantly stopped jumping and covered my face as I could feel the tears beginning to stream down my face. This journey has been so long, it’s been so hard, it’s been absolutely brutal at times but it’s also been so incredible because of these two individuals and I don’t want to say goodbye. I’m sad, really sad to say goodbye.

Lucky for me, I will see them again in two weeks when I cross the finish line but this time today was important. I needed just us to be a team, just the three of us, one last time.

So I dedicate this blog to the best team I’ve ever been a part of. 

Lots of 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. 

mountains

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.”

selfie with mountains

Lots of love and light,

Jessy 

Two Years of Bubble Girl

2yearspic

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….

Screen Shot 2016-02-23 at 9.28.31 PM

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….

photo-9

photo-10

Then I lost it all.

IMG_5886IMG_5815photo-2photo-47photo-45

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.

IMG_5833

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

IMG_7336

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?

leni

 

Breathe in the Now

  
It’s 10:30pm and I’m watching the Grammy’s with Phoebe on my lap. Ending what’s been a really great long weekend. Decide to check my TimeHop and this pic appears from 2 years ago. 

UGH.

My chest is now tight and I feel anxious as hell.

This pic was taken a few days before my diagnosis of blood blisters that had appeared on my lips. I remember when I woke up in the morning and I felt them in my mouth then went to the bathroom to see what it was, my stomach flipped. A lot of funny things had been beginning to happen to my body like bruises all over my legs and bloody noses and this got me worried. This made me think, “I hope everything is okay.” 

I hate seeing this picture because it floods my body back to those days leading up to being diagnosed when in my gut I knew something was wrong but mentally I wasn’t admitting it yet. I hate having to think of that time because it makes me feel sad for myself at that point. 

On Saturday morning, Mike and I attended our local (and amazing) yoga studio who has the most inspiring teacher. At the beginning of the class, she reminded us that we can never take a breath in the past and we can never take a breath in the future. We can only ever breathe in the moment. Those words resonated with me a lot on Saturday because I know I often can get stuck on worrying about things in the future but right now I remember her saying that as it reminds me that I’m not in that moment 2 years ago, I’m in the moment now… On my couch, with my two loves, and only a little over a month to go left of treatment. I’m here now. I’m grateful for this moment. I’m happy with my life at this point. 

So when you’re stressing about the past or the future, just remember, you can only take a breath in the current moment. Breathe in all the beauty of this moment, right here, right now.

Lots of love & light,

Jessy 

A Slap In the Face with Reality

Yesterday, like every Wednesday, I went in for my weekly dose of chemo.

Yesterday, unlike every other Wednesday, I was sent home without getting any chemo.

As always, they drew my blood to see what my levels were at, and unlike always, they discovered that I was neutropenic. What neutropenic means is that my white blood cells (specifically, the ones that fight off disease & infection called neutrophyls) are extremely low. To put it into perspective, a “healthy” person is above 1,000 and mine yesterday were at 150. I’ve been at this type of level before but not in a long time and only during times that I was being hospitalized. Being “neutropenic” means that I’m at an extremely high risk of infection, whether it be the common cold or flu or something more serious. Either way, if I were to catch something and get a fever of 100.5 or more, my ass would be back at the Brigham. And as fabulous as everyone is on 7D at the Brigham, that’s not where I’m looking to do overnights anymore. So, I was put onto house arrest. No going out in public unless it’s absolutely necessary until my counts are back into an okay range. Unless I go get them re-checked this weekend, that means I’m slumming around our Slummerville palace until I’m back at the Dana next Wednesday. I know that some people may read that and think, “so lucky, you get to work from home– you have an excuse to not be able to leave the house”– but that’s exactly what I don’t want. Yes, I would love to stay home for a normal reason and snuggle with Phoebe all day but that’s not what this is. The last thing I wanted to do was have to email my relatively new boss and tell her I can’t come into the office because “it’s too risky” for me. Do you know how embarassing that is? How awkward it will be when I go back to the office and people ask how I’m feeling or if I were sick? I have the options to either lie to them and act like I had the cold, awkwardly say something like “health issues” (which I used in an email today, SHOOT ME) or explain why I really was working from home which is honestly mortifying and awkward for everyone involved.

What’s more, is that my issue of not going into work is honestly the least of my worries right now. My bigger worry is that this pushes back my end date. I hadn’t announced it here on the blog because I didn’t want to jinx myself, so guess that didn’t matter. I am scheduled to end treatment on March 16, 2016. That’s 42 days from now. 42 days!!!!!!!!!! If I go in next week and my counts haven’t climbed back to 1,000 then I don’t start my new round of chemo (I’m on three week cycles, so next week is “week 1” which means an additional form of chemo and the start back up of steroids and my 2 week chemo pill). And if I don’t start my next round next week, then March 16th gets pushed back. And I just can’t have that happen. I need March 16th. I want it so badly. I want to finish this chapter so incredibly much, it’s hard to explain.

Yesterday, my nurse Andrea told me not to worry. Dr. Mandy gave me a call at night and reminded me that these things happen and just to rest and enjoy being home. But I can’t not worry. I’ve been in such a good place lately, chugging along, week by week, that a bump in the road now feels like a big stumble. Since the beginning, my dad has compared this journey so eloquently so the Boston Marathon– we’ve talked many times about the various points I was “at” during the race– it will be about 26 months from when my symptoms started to when my treatment ends so it’s fitting the the marathon is 26(.2) miles. But Heartbreak Hill is mile 19 through 21– and I’ve passed mile 21. I’m rounding in on the Citgo sign now. The end is in sight– my feet are numb and my knees feel like they’re about to buckle but I can do this. As I’ve said so many times to myself over the past 24 months…I am strong, I am loved and I can get through this.

Like so many times before, when I started writing this blog, I felt bitter and pissed off but as I finish, I’m reminding myself that whether the finish line comes on March 16 or another day, I’m going to finish the race.

Lots of love & light,

Jessy

 

First of the “lasts”

Today was a big day for me. 

Today, Januart 20 2016, I sat with Mike at the hospital for about 7 hours 

Today I got a spinal tap. But this spinal tap was different, I still had Beyonce blaring and my healing stones in hand, but this spinal tap was my LAST one. This one is a check mark off my treatment list. 

This video are some moments from today. I want to begin recording things more as we go to the end, I gotta remember everything! This is a weird time in my life but it’s a special time and I never want to forget it!

https://youtu.be/t1kIIW0Tjps 

Thanks for all the positive prayers and vibes going into today. I’ll get results in s few days. 🙏🏼

Lots of love & light,

Jessy