The Beauty of Being Blind

To my amazement, over the past year and a half, I’ve continued to receive Smile Cards on a regular basis to take to the Brigham. Sometimes they’re from friends or family but more often than not, they’re from individuals or groups that I’m not associated with or know personally. Upon returning from the Cape on Saturday, I was immediately greeted with two batches of cards from different people. After we unpacked, I started reading thru them and, as I always am, I was moved by the kind words these strangers were writing to patients. But as I was reading through them, my mind wandered to the many tragic events that have unfolded in our country and throughout the world in the past month. It struck me, quite poignantly, that the many children and adults writing these cards don’t know who they’re writing to so they certainly don’t know the patients’ race or religion or gender or sexuality. They just know that they’re a human being. A human being in need of some support and so they selflessly offer their love, prayers and healing thoughts to complete and total strangers.

I wish that we could all see the world like the people who write these smile cards do…blind to the labels society puts on people. Blind to whether or not the person is voting for Hillary or Trump, blind to what kind of car they drive or what God they believe in or whether they’re gay or straight or transgender. They’re blind to it all; all except the fact that there’s a human being on the other end of that card, there’s a human being in a hospital bed that has a family and friends that love them. In the end, isn’t that all we really need to know? A person, just like us, is in need… We should help. 
It’s time we see people truly for the heart that beats within them.
Thank you to every single person who has written a Smile Card over the past year and a half. You’re making the world a more caring place. Keep them coming!
Lots of love & light,

Jessy

Advertisement

You Win Some You Lose Some

Today I won a little and I lost a little. 

Good news is that I’m off house arrest. My counts have risen enough that I can go out in public again. 

Bad news is that my counts didn’t come up as much as they needed to begin treatment again so we’re paused until we try again next week. So, I won’t hit the March 16th date. I had so wanted to keep that date and not be pushed back but I also realize that in the grand scheme of things, looking back at the two years, one or two weeks extra really isn’t going to make a difference.

So although today was not what I had hoped for I still had a pretty good day.

It started with feeling a little silly in my mask  but then realizing I’m exactlyyyyy where I shouldn’t feel silly at all. 

  
After getting my blood drawn I headed over to my favorite floor at the Brigham to bring them a boatload of Smile Cards. I have received nearly 200 from various students in NH & MA over the past few weeks which is so amazing. One of my all-time favorite nurses was there and I haven’t seen her in monthsssss so we got to catch up which made me smile.

  
Then I went and had some QT time with my Dr. D’Angelo aka Dan the man with a plan. We looked at my results from a recent CT scan which was really fascinating and things are looking good! 

Then since I wasn’t getting chemo, I had to go over to infused to have my port de-accessed and my three favorite nurses were ALL there at the same time. MY DREAM! Plus one of them it was the first time I’ve seen her from coming back on her maternity so it was fabulous to give her a hug and see pics of her little princess. Then we just got to spend some time the four of us chatting and laughing. These girls are the best and I literally consider becoming a nurse just so I can hang out with them everyday.  

 
Then I packed up and went down to the chapel as I typically do, but today since its Ash Wednesday I was able to get the ash cross put on my forehead which was nice.

I got home and decided it has been a week since I had gotten to be in public so I packed Phoebe up and we drove over to a local walkway along the Mystic River. It was cold but we were bundled and the princess was happy to be out and about. And we saw the beautiful Swans! 

   
 
Then we sat on a little pier and took a momma puppy selfie.  

    
 
We ended our night doing a very important first for a mother daughter duo: WE WENT SHOPPING!!! And oh boy does Phoebs love the shopping. Her harness has gotten too small so we had to get her a new one so she picked it out along with a hair brush and new ducky toy…obviously she needed another toy she said.  #chevronforever

 
When this shopping pair came home, dinner was on the table courtesy of Mike Stevens. ❤️❤️❤️

So what could’ve been a crummy day turned into one that had a lot of smiles and a lot of warmth from lots of different people. Thank you to everyone who has sent me words of encouragement, love, prayers, good vibes, positive energy– or just thought of me. I truly believe it’s all so important and I appreciate every bit from the bottom of my heart.

So next week, we just try again. 

Lots of love & light, 

Jessy 

Put Aside the Pride

In the past (almost) six months, my pride has overwhelmed me many times during my days at work. Being demoted is mentally one of the toughest things I’ve dealt with during the past year as I felt so hurt and so disrespected to have been brought back as something I had once been promoted from. But thinking negatively about it, I’ve realized, does no good. It doesn’t help me get my old position back and it certainly doesn’t make the days any easier. This week, however, I was able to meet with my “big” boss and I mustered up the courage to tell him how disappointed I was about the demotion, and honestly what a struggle it’s been for me to deal with that since being back. What’s more important, is that instead of just complaining about how I don’t love my current position, I spoke of multiple ways I think I can be better utilized and gave specific examples of things I’d like to work on and feel I can really contribute to. This made me feel tremendously better as I felt like A. I got what I wanted to say off my chest and B. I was being proactive about what I think my career path at the company should be. Things won’t magically get better overnight but it’s a step in the right direction, and that’s all I can ask for, right? 
All weekend, I was stressed about this meeting on Monday. I couldn’t stop thinking about it and was totally focused on how I could make it a productive and positive conversation. I was amping myself up, telling myself how great I am at my job. How I deserve this job. How I worked SO hard for the position I once had. How I have proven myself time and time again. How I deserved to have that position back. But this weekend, as I sat in the sand at a beach in NH, thinking about how I was going to get what I wanted out of this meeting, how I was going to “sell myself and my talents”, I ironically began reading about the Buddhist philosophy on “pride.” Buddhist teachings say that being “proud” is not a virtue and something that we should work to eliminate within ourselves. It reminds us that everything we have is because of other people, literally everything. That our very being is because our parents created us. That someone taught us how to walk and talk and read. That someone helped feed us when we were growing and put a roof over our head. That someone gave us our first job, and our second and our third. That when we make money, it’s because someone else is giving it to us. Whether it’s an employer or we own our a company and its a client or we have employees working to make us money, someone else is helping us. 
The whole thought is so extremely humbling. Exactly the opposite of how I had been acting in my head — “I deserve this, I deserve that” type of attitude. 
The whole notion though is honestly a really weird thought to me. I’ve always prided myself on the fact that I’m a hard worker, that I’ve earned everything I’ve gotten in life. I wanted to be a gymnast so I worked for it. Well, I had coaches that taught me and parents that paid for the lessons. I wanted to become a better public speaker so I enrolled myself in an oratorical contest. Well, I had a teacher that worked with me and let me practice for hours in front of her. I worked as a babysitter and house cleaner to save up on my own for my first car. Well, someone gave me that job and let me into their home so I could make that money. I went to college and worked my ass off for a degree. Well, I was able to work so hard because my parents financially and emotionally supported me and professors mentored me. I got my current job because I was successful at my first “real world” job. Well, yes that’s the case but I also had a friend’s dad pass along my resume in HR which absolutely helped my chances. All the things in life that i’ve accomplished, someone, in some capacity has helped me me it happen. 
This is such a different way to think about life and it’s hard because I think as individuals we like to pat ourselves on the back and tell ourselves what a good job we’re doing or why we deserve whatever life is giving us. There’s a lot of value in that, because I truly believe that you have to be your number one fan. You have to believe in yourself and your contributions to the world before anyone else can. But, what I can take away from this teaching is to truly remember that I didn’t do this alone. Not even close. So it’s important to remember and respect all those that gave you a chance, gave you an opportunity to make something of your life. In its simplest form, it’s remembering to have gratitude. Gratitude for everything and everyone in your life.
So say thank you to someone who’s helped you along the way. It’ll feel good for the soul. 
I’ll start…. 
to the most humble person I know, my Auntie Mary: thank you for teaching me what it means to be selfless and exemplifying what a strong and smart woman looks like. thank you for taking me to so many disney on ice’s, being at every birthday, and acting like a third grandmother in my life, I am truly lucky. thank you for being the kind, caring and gentle person that you are. i am so honored to have you in my life. 
XOXO,

Jessy 

A Slap of Reality

It’s been almost a month since I’ve been back at work. I’m coming in early, leaving late, chugging through long days. Overall, just really feeling the stresses of being a working girl again. And I have to admit, I love it. I don’t like waking up early (obviouslyyyy) but I like waking up with a day full of productivity and socialization in front of me. That was something in the past year I struggled with so much. I often laid in bed for long periods of time after waking up because I simply couldn’t reason with myself of why I needed to get up. So it feels incredible to be making my to-go coffee and heading out the door in the morning. Beyond work, I’ve been back to practicing yoga and going to the gym. Exercising feels awesome because I know it’s something good I’m doing for my body. With so many harsh toxins going into me every week, it feels only fair that I would give this body of mine something to feel good about. Another piece of really exciting news is I got a new car— WOOO HOOO!!!! I’ve only ever owned sh*t boxes (proud owners of them though since I saved my own money in both high school and college to be able to purchase them), but after rear ending some lovely lady that also works at TJX (another story, another time), I said goodbye to Carmen Elantra and got my dream car…a 2012 Hyundai Sante Fe- beep beep! New car, back to work, back to exercising, and back to eating and drinking! My pancreas has really done a 180 and I’ve been off pain meds for over a month and am eating practically a normal diet again! Mike and I even had nachos the other weekend and after over 6 months of not having them, we were in HEAVEN! I’ve also been able to have some drinks lately, which if you’ve read my blog in the past year or know me even slightly, you know that that’s a big deal. It makes me sound like a lush but so be it… I like to have drinks. I like drinking beers and watching the Pats. I like having a glass of red after a long day of work. I like having margaritas with my tacos or going to hotel bars with Michael and getting house snack mix and martinis. I like being Champagnes Moran. And Champagnes Moran I was two weekends ago. Mike and I had an awesome night just the two of us going out to dinner then heading over to a new bar for after dinner drinks…it just felt normal. And that feeling of normal gave me such a sense of pure happiness, from the top of my head to the tips of my toes, I felt amazing. I felt like “Jessy” was finally back in action!

IMG_5262
!!!!!!!!!!!!!!!HAAAAAAAULLTTTTTTTT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
That’s what it felt like. That’s what getting pancreatitis and being hospitalized for it for the fourth time a week ago felt like. A W-T-F moment. A “no! no! no!” moment. A “this can’t be happening” moment. It felt like a punch in the gut…literally. My life had just gotten back to my new normal. I was feeling like me again. Life was being good to me. And then I go in to have my stent removed on Friday and the stent gave the doctors trouble coming out. So much so that it broke in half while they were in there. So with that much struggle going on, my pancreas got “upset” and pancreatitis hit me again. I spent 28 hours in the emergency department before being transferred to a hospital room and another day asking when I could get transferred to 7D. We watched the Pats game on a 13 inch TV with no apps and no beers. (but with the company of some of my favorite people, Mike, my mom and Dr. Mandy!).
IMG_5251
I sat in a hospital bed trying to get as much work done as possible as I couldn’t bear thinking I was taking more time off after just coming back from being out for 11 months. I’m back on pain medicine and wearing my stupid heating pad day and night. I got released Tuesday night and was back to work by Thursday. It was such a hard week and I’m so glad it’s Saturday. Having a taste of my normal life again and having it taken away again is a lot to handle. I started crying really hard when I got home from work yesterday while I was talking to my mom… I just couldn’t hold it in anymore. It feels SO unfair this time. Everytime has felt unfair but this time just seems like too much. Having what I’ve wanted back this entire year— normalcy— and then having it taken away one more time is more painful than I can really put into words. Mike came home just as I was sitting there sobbing on the couch and for the millionth time this year, he gave me a hug, kissed my forehead and talked to me about it until I felt better. I had been trying to just “keep marching along” and pretend like this was something “I’ve done before, I can do it again” but it’s more than that this time. It’s frustration to a whole new level. But after crying and talking it out, I felt better. I’m already one week down. I’m already out of the hospital which is a lot better than the first three times. I’m back at work and have something to keep my mind off it. It’s likely that it won’t take as long to heal this time. And there’s no more stent in me which means no more endoscopies which hopefully means this truly is the last time I’ll deal with pancreatitis.
AND lastly, the Patriots are Super Bowl Champions. So really, life is still pretty good.
IMG_5252
Happy weekend everyone!
XOXO,
Jessy

My Year in Review

As 2014 was quite the unexpected year for me, throughout the year, I decided to take videos and pictures of myself while home alone to document what my thoughts and feelings were on a day-to-day basis. I’ve made a compilation video of some of these images and clips of the videos to share with all of you who have so kindly followed my story all year.

Thanks to each and everyone of you for your support, kind words of encouragement and love throughout 2014. It has made all the difference in the world.

XOXO,
Jessy

Back at it Again

On Thursday I found out that my pancreas had suffered a leak in it during the first two pancreatitis attacks. So my doctors quickly scheduled an endoscopy procedure for the next day to place a stent where the hole is. I was so nervous about it as I hate being put under and I’m anxious about a foreign object being in my body. But I trust my doctors so I knew it was what I had to do. Friday morning came quickly and with Mike by my side, I had a stent placed in my pancreas. Everything went smoothly and the doctor was really pleased with how the procedure went. I was even able to go home that night in time to pass out candy to the trick-or-treaters!! (Huge deal to me cause I had been really looking forward to that so I would’ve been really sad if that got taken away from me). Anyways, Saturday morning I woke up with intense pain in my stomach, I was rolling around and just could not get into a comfortable position. So I took pain meds that typically help and waited an hour. No such luck. After a call to my oncologist, Mike and I were on our way to the emergency room (which was filled with drunk halloween goers. Woof). My hope was that I would be able to go in, get some IV pain meds and head home but that wasn’t the case. After being in the emergency room for 6 hours, I got admitted, again, to the Brigham 7D. I am so frustrated because I had been doing so well. I was eating, my nausea was starting to go away, and I was overall just feeling good. So being back in the hospital bed hooked up to 100 different machines and unable to drink or eat…I feel more than discouraged.

On the bright side, it’s freezing out (I saw snow flakes out my window-ahhhhh!!!) and I’m inside all day. My amazing doctor made me two “pancreatitis” playlists to listen to (how sweet is that?!) My family and Mike have been by my side the whole time. And I got onto my favorite floor which makes things so much more enjoyable and comfortable. Definitely not an ideal situation but I’m trying to positive because things could definitely be worse.

(Here’s a pic of me and my TPN feeding tube at home! Fun, fun, fun!)

IMG_5966.JPG

XOXO,
Jessy

PS this is not a pic for the faint. So if you don’t like bodily functions, I’d X out now. But below is a pic of my pancreas before with the hole (on the left) and it now with the stent in it (right side). I thought it was pretty cool so wanted to share with you guys!

IMG_5990.JPG

Until Next Week

LK;ADKFJAD;LAJD;LKJA;LKJDF;LKJ AHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!  

 
That, my friends, is how I’m feeling right about now. Today went NOTHING like how I thought it was going to be. I had planned to write a post tonight from my hospital room, instead here I am sitting at my kitchen table again. I’m home with a packed suitcase and another hospital stay pushed off. Good news, I didn’t get the bone marrow biopsy. Oh wait, that’s just because I’m getting it next week instead. Today I got a better understanding of what my doctor didn’t “like” last week. Basically, when my blood’s been drawn the past two weeks, things called “blasts” have appeared which indicate that the leukemia could somehow have come back (could, keyword there). Luckily, although still there, that number has decreased since last week and all my other counts were in the normal range. So both my doctors are leaning towards that these “blasts” are just immature cells that my bone marrow has produced while it’s been replenishing itself. However, the possibility of the leukemia coming back is real and therefore, until we know exactly what’s going on, we can’t move forward with my planned treatment. 
 
As my doctors were explaining everything, I started getting emotional… I was instantly overwhelmed, I felt like a ton of bricks had just fallen on my shoulders. Consoling me, Dr. Mandy talked to me about how healthy it is to get “out” my feelings and said something that really hit home. She said, “You’re dealing with death, 50 years earlier than you should. You have the right to feel the way you’re feeling.” I hadn’t thought of it like that until this moment. I had been coping by categorizing this in my head as a “sickness,” a sickness that is awful and unfair but something I would get through and undoubtedly live to tell my kids about. I’ve done a good job telling myself that the ‘d’ word is not an option. And I really still don’t see it as one. (I have way too much to do in my life to let it be an option.) But the fact that it’s ever even mentioned or considered is terrifying. The reality is, this most likely is all just a big scare; the hope is that I’ll go in next week, get this bone marrow biopsy done and find out a few days later that everything is fine and continue on with the action course we’ve had planned all along. But the possibility, as small as it may be, that the results could come back next week and things could get “more serious” than they already are leaves me a little speechless. I am, however, reassured that if the results don’t come back the way we want them to, there are still different treatment options we can try, all of which are of the goal to cure.
 
Other than those first few days, emotionally this was definitely one of the hardest/scariest days. But, just as they were there to comfort me in those first few hours and days, my doctors were there to comfort me and be honest with me…to let me know exactly what’s going on and in terms a marketing major can understand. They make such an incredible team and are so unbelievably knowledgable about this disease. I trust their decisions, whole heartedly and completely. That’s a priceless feeling. Beyond all their brilliance, however, they are caring, kind, compassionate people, and those qualities have continued to make all the difference for me. When I look in their eyes I can see how much they want this too, how much they truly care about me, almost as if I’m a loved one of theirs. I’m not though, I’ve only known them for 3 months. But they care about me a lot and they take care of me to a level that I can’t describe. I am and will forever be grateful to Dr. D and Dr. Mandy– best doctors a person could ask for.  
 
So my update today wasn’t the brightest of ones. Today was a tough day. This week will be a tough week… my mind is inevitably going to wander and I’m going to have to try really REALLY hard to stay focused and positive. I never thought I’d say the words “I’m excited to get a bone marrow biopsy” but I’m excited to get a bone marrow biopsy. I want next week to come because I want to know what we have to face. Once we know what we’re facing, we can map out our plan of attack and get back to kicking some cancer ass.
 
But before I get back to kicking some ass, I’ll take a few extra prayers this week if you’ve got ’em. 🙂 
 
XOXO,
Jessy 
 
p.s.  a shoutout to my shitty friend leukemia— go eff yourself. 
p.s.s. another special shoutout to my lovely grandparents and great aunts and uncles– apologies for my cursing.