Storms Don’t Last Forever

photo.PNG-4
Storms don’t last forever. It’s a mantra I’ve found myself needing to think a lot lately. 
 
It’s been over 5 months since I was diagnosed but it feels like a century. When the 20th of the month hit, it felt hard to believe that I’m not even to the halfway point. Scratch that, in the grand scheme of things, I’m not even to the quarter mark. Spring 2016 feels like an eternity away. And in the middle of Summer 2014, the thought of that date gets me down. Taking it day by day is most definitely the best way to complete this challenge. But I’m not a day-by-day type of person. I love looking to the future. I’ve always been like that… looking forward to what’s next, striving for a bigger and better goal. But in this case, when the goal is so far away and there’s a lot of “mehhh” in the middle, looking to the future feels more like a daunting task rather than an exciting endeavor. 
 
I wrote this yesterday in the middle of the afternoon, sitting on my couch, basically just feeling sorry for myself. 
“I just want my life back. I want it back so so so bad. I want to go to work. I don’t want everyone to have to take care of me and do favors for me. I want to have a drink. Go for a run. Do laps in the pool at my sports club. Eat raw sushi. I want to go on the vacation Mike and I had planned to the Dominican. I want to not feel worried all the time or have so much anxiety. I want to get a paycheck. I want my boyfriend to not have to give me shots in my stomach every night. I want to get a manicure and pedicure. I want to not think about cancer every second of every day.” 
 
Those negative emotions are all I could think yesterday. All I could feel is how much I want my life back. However, reading it back, I feel guilty. I beat myself up when I have pitty parties for myself because it makes me feel so ungrateful and unappreciative of what I’ve been given. I’ve been given the gift of being able to fight and overcome this terrible disease. Not everyone is as lucky— that’s a thought that goes through my mind multiple times a day. I am lucky and I know it. But the truth is, I sit here today and I still ache for my old life. I still want more than anything to wake up from this bad dream and be a healthy, normal 25 year old. I try so hard to be strong but sometimes it’s just too overwhelming, too draining, too frustrating. But today’s different than yesterday. How much different? Not much. But I’m one day closer and two shades happier. Tomorrow I’ll be at the hospital all day and will be getting another bone marrow biopsy done to triple check that there are no leukemia cells in my body. So tomorrow’s a big day. It won’t be a fun day, so today had to be. Today I cooked and went to the super market and received a pair of fabulously comfy slippers from a coworker and am about to go to an outdoor yoga class which will be the first time I’ve done group exercise in over 5 months. It’s a better day than yesterday and Thursday will be a better day than tomorrow. 
 
Storms are scary. There are large cracks of thunder, lightening that illuminates the sky and sets fire to things here on earth, heavy rains that come in sideways and make you cold and wet. Often times in a storm, you even lose power. Sometimes, the lights just flicker and other times you can lose it for hours and even days. But the light always comes back on. The thunder and lightening and rain, they always stop. The clouds always break and that big beautiful sun always comes shining through. 
 
XOXO,
Jessy

Milestones

Today is milestone day. Today marks the end of my brain radiation. It was only an 8 day preventative treatment regimen but it’s another thing to check off “the list” which feels incredible.

All-in-all radiation was strange. The process is pretty simple— you go in, get on the table, strap in, get zapped for a few minutes and then it’s done. It doesn’t hurt and it’s quick, so in that regard, it’s pretty great compared to chemo. However, it’s sneaky because it makes you really exhausted which is never any fun. The worst part, BY FAR, was getting fitted for my mask a few weeks ago. Basically, in order to make sure that my head doesn’t move an inch during the treatment (don’t want to zap the wrong areas), you have to have a mask created specifically for your face that you wear each time. It fits tightly around your face and then locks in place so you can’t move. Definitely would not be ideal for the claustrophobic! But with the help of my girl Beyonce, we blared music throughout the room and it made the few minutes go by quick and painless. Nothing a little Yonce can’t make better.

photo 2-9

photo 3-10

photo 4-7

So with one of my best friend by my side, I walked out of the Brigham today with my mask in hand and am happy to say that getting my brain radiated is a thing of the PAST. WOOOOOOOOO CHIL’!

photo-48

And then we have tomorrow. It will be another long, hard day but at the end of it I get another milestone under my belt. Completion of the CNS (central nervous system) phase.  I will receive more chemotherapy and then one final spinal tap (this is the fourth in a two week period).  But as long as everything goes as planned, this will be my last spinal tap for 18 weeks!!! That’s about as long as I’ve been going through treatment so that my friends, is a very welcome and pleasant change of pace for this young lady!

Milestones are important. They symbolize progression and moving forward. And that’s what I need right now, to keep on keepin’ on. Onward and upward: it’s what it’s all about.

photo 1-11

XOXO,

Jessy

Day 22

Image

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.  

Image

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.  

Image

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

Image

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. 

Image

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. 

Image

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.

Image 

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.) 

Image

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. 

Image

 

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. 

Image