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

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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

You’ve Got Mail

Last night, Mike and I got home from a VERY early dinner and found ourselves watching “You’ve Got Mail” with Tom Hanks and Meg Ryan. It’s such a good, truly romantic movie, and one that I had never seen until last year. I realized while watching it last night, as the snow came tumbling down outside, that it was a year ago that Mike was in New Orleans for a bachelor party and I was home by myself watching this movie having a glass of white wine. A year ago, I had no idea what was about to come my way. As I sat there on the couch, I remember feeling fully stressed at what was “happening” to me. I knew something was wrong, I was in agony about every other day with shooting pains down my back and legs making me unable to not only walk but do anything but roll around in bed and yell in pain. I was having nose bleeds regularly and blood blisters on my lips. I had bruises all over my body that had no reason for being there. And I had headaches so bad, I started keeping a neck pillow in my car so I could have some sort of relief as I drove to and from work. But as worried as I felt, I truly couldn’t have imagined the news I was about to hear and the year I was about to have.

In “You’ve Got Mail,” Meg Ryan’s book store is forced to close down due to a large, conglomerate book store opening up just down the street. She’s tormented with the fact that the life she had envisioned for herself and grown accustomed to, is so abruptly taken away from her. As I watched last night, I empathized with her character so much more deeply than I had just one year ago, as our stories are not the same but I so understood how she felt getting her “life” ripped away from her. But by the end of the movie, she’s making the best out of a bad situation and turns out to be writing her own book and allows herself to truly follow her butterflies and finds herself in the arms of Tom Hanks. She lets life take the reigns and it leads her to happiness. That’s what I’m still trying to do, trying to let life take the reigns, follow the things that give me butterflies in life. Because one thing I’ve learned in this past year is that life’s too short, too precious and too unpredictable; you’ve really got to enjoy each day for what it is. Whether it’s a good day or bad day, just appreciate the day. Appreciate it because you’re lucky to be here and lucky to have what you do.
XOXO,
Jessy

All You Need Is Love…and Friendship

I haven’t written a blog post in a week. I’ve started them, but haven’t been able to finish. I’ve wanted to write one but haven’t been able to find the right words for how I’ve been feeling. Because quite honestly, I’ve been feeling just about everything but inspirational. I still don’t know if I have the “right” words to say but I do know that it’s healthy for me to get out how I’m feeling and that’s what I shall do. Because my hope is that one day, I’ll read this back and it’ll be just a reminder of what I went through and how far I’ve come. And I gotta be honest, I can’t wait for that day. So March 26, 2016 (two years from remission)— get at me.
Last week, I received an email from Dr. Mandi (one of my two absolutely fabulous doctors). I had asked for some sort of outline of the next two years so I could get a better understanding of what was really ahead of me. So I got it, just like I had requested, and it scared the absolute hell out of me. Two years of treatment spelled out in front of me. Two years of a lot of procedures, appointments and chemotherapy. Two years of my life not being my normal life, not being the one I want to live. And being not even two months “in,” it pushed me over a cliff of anxiety, sadness and anger. This past week was hard… both physically and mentally. My body is achey. My head is still pounding from a spinal tap I got 10 days ago. I’m tired, really tired. But worse than the physical annoyances, I’ve been mentally struggling to stay above water. I felt so many emotions and none of them were positive. I felt sad, lonely, overwhelmed, confused, and honestly, pretty pissed off. Pissed off that so many important things in my life have been pushed back or paused. Pissed off that my whole life I’ve always tried to make healthy choices for myself and this still happened. Pissed off that things like taking a shower is a production. I found myself being jealous of complete strangers for reasons like they have long hair or are jogging or walking a dog. I was finding myself having to talk myself out of bed in the morning. And so when Dr. Mandi’s email came and I read, line by line, how intense the next two years will be, it scared me, because I felt like I can’t handle two years of weeks like this.
All in all, I was having a big pttty party for myself and I knew it. But I couldn’t snap myself out of it.
But then Thursday night came and for the first time in days, I went to bed with a big smile on my face. Not because I felt physically any different than the rest of the week, and not because I magically was feeling more positive. Thursday was different because it was the start of a weekend with three of my best friends… one who lives in Boston, one who lives in Chicago and one who lives in North Carolina. And the excitement of spending an entire weekend with my girlfriends was just the medicine I needed. Our time together was different than a typical girls weekend, consisting mostly of ‘lounging’ and relaxing but simply being together took my mind off of everything else and made me happy. So the power of friendship prevailed over anxiety, anger and sadness. Prevailed just when I needed it to. Just when I couldn’t pick myself up on my own. Friends and laughter and love picked me up and gave me something to look forward to and be thankful for and to simply enjoy. Because snuggling on the couch, watching trashy tv, eating candy and making each other giggle is one of the most enjoyable pastimes a girl could ever ask for.
Now my girlfriends have all gone home and it’ll be just me again this week but I feel different than I did on Thursday morning. I feel different because I’ve been reminded that these next two years won’t all be like last week. Some will be, yes. But there will also be a lot of days that are happy and fun and enjoyable. And those are the days that I’m going to think about and look forward to when I begin to put on my pitty party hat again.
So CHEERS to fabulous girlfriends!
XOXO,
Jessy
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p.s. this Sunday I’m thankful for 1. my girlfriends (duhhh), 2. Uncle Fred (my adorable stuffed bear), and 3. the weather finally starting to warm up (but lets face it, I could use another 20 degrees warmer).

Hard Day Down, One Step Closer

Disclaimer: This is not a sunny post. I need to get out how I’m feeling right now and right now, I’m a little cloudy… cloudy with no chance of North End meatballs.

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Yesterday I received extremely positive news— I’m officially in remission! REMISSION!!! Meaning that when they pulled my bone marrow on Wednesday, it came back clear of any cancer cells. Hallelujah! However, factually, they know that if we do not continue to fight the cancer cells they will absolutely come back. So continue to fight we will.
But I found myself unable to truly feel the excitement that should have accompanied this amazing news. News that my body is kicking some serious ass. News that I am going to live. L-I-V-E. This is huge news, obviously, but I felt so little relief. I had become overwhelmed with emotional and physical pain yesterday. Wednesday, Thursday and Friday were, to say it simply…a lot. I had prepared myself for Wednesday but not Thursday and Friday. I hadn’t understood that I would be back in the hospital so quickly and was feeling so frustrated about it. I also hadn’t been able to prep myself for how I would physically feel… which was terrible. My whole body ached. Every joint hurt when I moved, or laughed. My head felt like a tractor trailer was sitting on top of it— and the only thing that brought any relief was to sit in the dark (and lets face it, I’m all about that light!) And then the nausea started and I couldn’t keep anything down. And throwing up sucks. No better way to put it.

So after blood being drawn, an ultra sound of my stomach and back, a check-in with my doctor and six hours of being in one out-patient room to get a few rounds of chemo, I finally was being transported by wheel chair to the overnight room I’ll be in for the next few days. With a splitting headache and my mom holding my hand, I began to get extremely nauseous and became “that person” getting wheeled by a stranger while puking their brains out into a plastic bucket. Crying. It was one of those moments. A moment I don’t think I’ll ever forget because I’m not sure I’ve ever felt lower or more beaten in my life. Not because of the pain but because of the way it made me feel about myself. It was embarrassing and down right demoralizing. I wanted nothing more than to grab Harry Potter’s invisibility cloak and hide. Better yet, I wanted to wake up from what I feel like is a horrible nightmare. But I can’t. Because it’s not a nightmare, it’s my life right now. And as much as that sucks, it’s life. It’s my life and it’s still a good one. In fact, it’s a great one. And I’m lucky to be here. Even in low moments like that one.

Around midnight I was able to get on medication for what was causing all my symptoms and it’s helped a lot. At 3am I got hooked up to a type of chemo that runs into my veins for 24 hours straight… so I’ll be here at the Brigham for a while but feeling much better today am going to try to do some things I enjoy. Like blog. and paint. and sleep— hopefully!

So all-in-all, not my favorite few day but those days are now in the past and that means I’m one step closer to winning this game. I thought I’d leave you with a fab quote that my dad said yesterday as he sat by my side all day, 9am to 10pm. As the true sports announcer he is, he compared my remission news into a perfect Boston sports analogy… “When the C’s were murdering the Lakers in Game 6 of the 2008 NBA Finals, they didn’t stop playing hard at the half when they were ahead by over 20. They kept fighting and kept playing their asses off until the buzzer hit 00:00 because they knew that’s what they had to do to win the game.” And win they did… by a NBA Finals’ record of 39 points. And that’s what I’m going to do too— keep on kicking ass and keep on playing as hard as I can. Because I’m a competitor and I’m gonna win this game.

Thanks for listening. I’m jumping back on my positive party in just a few minutes.

XOXO,
Jessy

Day 22

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Today is the twenty second day of being here at Brigham & Women’s Hospital, floor 7D. Today I cried. Today, like almost every other day, I woke up to doctors coming in my room to examine me and ask me questions. It really wasn’t unlike most other days but for some reason today I hit a wall. I hit a wall of “I want my life back.” I don’t want to be here. I don’t want to have a thousand people pop their heads in “my” room. I don’t want to be in this room. I don’t want one more hospital or frozen meal. I don’t want to poked at and given shots. I don’t want my vitals taken. I don’t want write down how much I’m peeing. I don’t want my fingertips to feel numb. I don’t. I don’t. I don’t. 

I am closer than I have been to going home but I’m feeling farther away from it today. I need to remember all the good things that I have my life and that’s exactly what I’m going to do with this blog. Number one good thing in my life? The people. I am so fortunate to have the most amazing support group and they have helped me get through these twenty two days better than I ever would’ve expected myself to.

I’m lucky that every morning I’ve had a card to open with my breakfast, filled with loving and meaningful words that brighten my spirit and help me feel rejuvenated. This has something that truly has made such a difference in making each day better and I know that not every patient is as lucky. For that, I am so thankful.  

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I’m lucky to not only work for a fabulous company currently that has been so incredibly supportive during this hard time and have sent me gifts, well-wishes and most importantly VISITORS but I’m lucky that that I also have worked for another unbelievably thoughtful company in the past who although I no longer work there took the time to create the most beautiful gift. An origami mobile filled with words of inspiration and encouragement from coworkers. It’s bright, beautiful and unique –I can’t wait until it’s hanging in my home.  

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I’m lucky that everybody wants me to have soft lips….

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I’m lucky that I met the most amazing group of girlfriends in college. Friends that will last my entire lifetime. Friends that make me laugh harder and smile bigger than just about anything. Friends that, although scattered literally across the continental U.S. somehow were able to work together to all pitch in and surprise me with the most beautiful bracelet I’ve ever seen. A bracelet that is engraved and corresponds with the longitude and latitude coordinates of where we all met– Tampa. This gift literally took my breath away because how could it not? How blessed am I to have people this thoughtful in my life? So to my Tampa Betches, you girls have and will always have my heart. 

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I’m lucky that I have the two best friends by my side through this whole thing. Who are more like sisters to me than friends. They’re both always here. Both always have been and always will be. And there’s nothing better than that. 

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I’m lucky that people have, simply put, spoiled me. Spoiled me with the softest blankets to ever touch a BWH bed, the fluffiest stuffed animals in all the land, copious amounts of candy, reading material to last me a year, endless tools to make me the craftiest Somervillian of all time, and most importantly my own personalized bottles of Sweet Baby Ray’s Buffalo Wing Sauce.

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I’m lucky that I have the most supportive family I could ever dream of. A sister that’s my best friend and talks to me every day and sees me every chance she gets. A brother-in-law that makes even hard situations a funny one. A little brother that has traveled back from NYC too many times to see me and be with me. Grandparents that text with me everyday (yup, that’s right. Every single one of my grandparents text!) Parents that have been to this hospital almost every single day to give me hugs and kisses and the love that I need more anything else right now. And of course, a niece that sends me stupid adorable pics of herself every day that make me happier than I can even describe. 

(I’ll take any chance I get to show off how adorable this baby is. seriously. she needs to become a baby model— get on that Courtney.) 

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I’m lucky that this guy has slept next to me…in a cot. Every. Single. Night. All 22 days. He didn’t need to do that, but he does it because it makes me feel safe and happy. He does it because he loves me, a lot. And that makes me the luckiest girl in the entire world. 

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So I started writing this blog a little down in the dumps and now, now I feel better. Because how can I not? I have SO much to be thankful for and to feel lucky about. 

I’m off to paint. 

XOXO,

Jessy 

p.s. Here’s the last thing I feel lucky for…I feel lucky that I didn’t choose this 1980’s Metal Band Rockstar Wig. 

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