Tag Archives: leukemia

Home Sweet Hospital

Posted in My Stories by

This Monday, I woke up and went to the Brigham with my mom and Mike. I checked in and got into a johnnie and hopped up into the bed. In a weird way, it felt normal. Being in a hospital bed, although I haven’t been for nearly a year, felt comfortable. Instantly, I was brought back into a world that I should feel very scared of and anxious around but instead, I feel a sense of security. I know to an outsider, and maybe even my family members, that must sound really strange and kind of unhealthy but for me, it’s true. Of course, I was nervous about the procedure and any complications that could’ve arisen but as I sat there in the underground’s of the Brigham by myself waiting for the doctor or nurse to come see me, I was at ease. I wasn’t supposed to be “figuring out my life” or thinking about what I want to do next or applying for jobs, all of which I feel completely lost and unsure of myself doing. Somehow, sitting in a hospital bed, I felt confident, I felt peace knowing I was exactly where I should be at that moment. I was there to put a final close on my leukemia chapter.

I was there to get my port removed.

(For those of you unfamiliar, a port is a permanent IV line that stays in your chest and allows you to give blood and receive medications through. Below is a pic of what it looks like).

IMG_0990.JPG

It was a day I have dreamed of for so long, incredibly surreal to believe the day had finally come. This thing, this piece of plastic and tubing that’s been a part of me for the nearly three years. Originally, it felt so foreign and I hated how much it stuck out from my chest. However, I slowly began to have a deep respect for it as I started to realize how it was the gateway to my health. Sometimes when I was at yoga, for example, and the instructor would say to put our hands over our hearts, I’d put one hand over my heart and one over my port. I started thinking of my port as a part of me, and started imagining it as my second heart. One that allowed my original heart to keep beating; it was the catalyst that kept me alive and I am so grateful for it.

IMG_0978IMG_0987IMG_0989

However, this Monday it was time to part ways, and to my moms delight, when I asked the doctor if I could keep it, she graciously said, “no, unfortunately we have to put it in our hazardous waste disposal.” I get it, it sounds strange to try to keep it but I wanted to because of the fact it was such an enormous and important aspect of my journey. I wanted to keep it with my other mementos from my “cancer chapter.” So I was kind of disappointed, strangely enough. But I realize, I guess I don’t need to physically hold onto something because I’ll always hold onto as a part of who I am. I will look at the scar on my chest for the rest of my life and remember exactly what was there, and exactly how blessed I am that all I have left is that minor battle wound. It’s one that I’m immensely proud of.

IMG_0992
So today, after two days of being sleepy and one day being kind of grumpy (I’m sorry Mike 😢 I do love you), I got myself out of the house and met with Dr. Mandy at Dana Farber, not because I had an appointment but because we wanted to catch up and chat as two friends. Dana Farber isn’t home, nor should it ever be, but I’d be lying if I didn’t feel at home there. Who would’ve thought?

Lots of love & light,

Jessy

p.s. final pic is me today… a flat chested lady once again 🙂

IMG_1006

Advertisement

Time Goes On

Posted in My Stories by

3 years ago on this morning, I was in a hospital bed being woken by doctors and nurses. I was about to start one of the most physically painful and emotionally draining days of my life. I had just been diagnosed and rushed to the hospital the night before and today was the day I had to undergo multiple tests and procedures to determine just what kind of leukemia I had. January 21, 2014 was a day of absolute unknown and terror of what lie ahead. 
3 years later I’m waking up in my own bed with no beeping machines or nurses poking me for blood. Instead I can hear my wind chime outside, birds chirping and Phoebe is snuggled up next to me demanding for scratchies. I’m wearing an engagement ring and get to marry the love of my life in 5 months. I’m going out to dinner with my best friend of 25 years tonight for her birthday. My life is in such a different place than it was on this day in 2014, it’s almost mind boggling. 


3 years from today is still unknown. However, this time, fear has been replaced with excitement. Where will Mike & I be living? What will I be doing for work? Will I be a mom? There’s so much more living to do. There’s so much more I’m looking forward to and I feel beyond blessed that I get to feel these feelings of excitement and joy. 
The beauty, and tragedy, in life is the same. You never know what life has in store for you. You never know if the hopes and dreams you have for yourself will be realized. But you do know that you have today, and this moment and this breath. So make the most of it. Enjoy it, savor it and soak up the sunshine that is your life. 
Sending each and everyone of you – those who have my followed my blog from the beginning and those who have just found it- so much love and gratitude. I am thankful everyday for the prayers and positive energy that you have sent my way to get me to this day. 
Love & light,

Jessy 

The Guilt of Health

Posted in My Stories by

I can’t believe it’s been over a month since I wrote a post. I can blame it on the fact I’ve been quite the busy lady in August, from bachelorette weekends to concerts to Red Sox games to doggy ice cream socials to creating a 6-page itinerary of our upcoming Italy trip, it’s been a whirlwind month but if I’m being honest, there’s another reason I haven’t written too. I have a bit of guilt that’s kept me from writing.  I used to write this blog in a hospital room when I was feeling lonely or sad or scared or upset to get my emotions out. I still have feelings of isolation or sadness or anxiety but I don’t feel like I have the right to express myself when so many things have gone right for me recently. What do I have to complain about when I know there are so many people still suffering? I know that this blog should be a safe space for me but, like everyone, I worry about what others will think. What you will think. Whether or not somebody will roll their eyes when they read my posts. People might think this is weird but I almost feel more vulnerable expressing my feelings now than when I was going through treatment. My day to day isn’t “interesting” to the outside world anymore. And god damn, I’m so happy it isn’t! My trials and tribulations are just like everyone else’s — a normal 27 year old, trying to figure out the whole work-life-love balance.

After going through cancer, I feel such a large responsibility to myself and every single person who gave me my health back to make the most of life, to be the happiest, healthiest version of myself. But sometimes having pressure to be happy, to be content, to be “living life to the fullest” is overwhelming. I learned so strongly how quickly life can change and so I hate when I feel like I’m “wasting time” or not making the most of everything.

So this was a bit of rant but sometimes that’s when I get my truest feelings out and that’s what I’m going to continue to do, keep being honest and as open as I can be. I’ll keep this blog as a place for what’s going on in my life– whether it’s inspirational or not, it’s what’s happening in my life.

On a brighter note, something that just happened in my life was getting the opportunity to be interviewed for the Red Sox pre-game show with Tom Caron last night to tell my story as a way of raising awareness and garnering funds for the Jimmy Fund. I had an absolute blast and was ready to start handing out my number to the staff to try to get me my own show! haha boy, I just loved it! 🙂 Here are some pics :

Lastly, Mike and I leave for Italy vacation this coming Monday. I went to Dana Farber today and was so relieved to find out that everything still looks good and I’m in the clear to head abroad. I’m beyond excited!

Happy Wednesday all!

Lots of love & light,

Jessy

 

I Need Your Help

Posted in My Stories by

 

When the emergency room doctor stepped outside after telling Mike and my parents that I had leukemia, there was precisely one thing that popped in my mind and quickly came out of my mouth, “but I want to marry Mike,” I said to all three of them. One year from today, on July 22, 2017, at a quaint inn on Cape Cod, that dream of mine will become a reality. That dream is due in large part to the the Dana Farber Cancer Institute. I have about 1,000 things to thank them for but giving me a second chance at life and giving me the opportunity to marry the love of my life and start our life together brings a level of gratitude I will never be able to match. But in just over two months, on September 25th, I will symbolically try to thank the organization that essentially gave Mike and I our future, by walking in the Jimmy Fund Walk to support the ongoing programs, medicine and RESEARCH. This research is imperative to conduct so that one day all stories have a ‘happily ever after’ like mine. Tragically, today that isn’t the case for all patients that go to the Farber in hopes of fixing themselves and getting to marry their Mike. So it’s my responsibility to help and today, I’m asking you to help too by making a donation to my walk team. 
 
Any donation, big or small, truly makes a difference in the efforts of Dana Farber and their live-saving mission. On behalf of all past, current and future patients, I thank you from the bottom of my heart.
 
tinyurl.com/jessysjfwalk

Lots of love & light,

Jessy

2014 vs 2016

p.s. Cheers to one year today Stevens, I love you!

Walking for the place that saved my life. 

Posted in Inspiration by

To my lovely readers of the Inspiration Initiative,

First off, sorry I haven’t been so active lately. Life has been really busy but exciting (more to that later this week) and I’ve put writing on the back burner. But I’ll get back into it as long as anyone’s still reading it 🙂

ANYWAY, I wanted to let you all know that I have decided to walk in the Jimmy Fund Boston Marathon Walk as an effort to raise funds for Dana Farber Cancer Institute. As you know, I was diagnosed with acute lymphoblastic leukemia in February 2014 and just completed treatment on March 30, 2016. I have my remission to thank for the incredible doctors, nurses and medical staff that took care of me during this long journey. I also have every single scientist, researcher and person who has ever donated to finding a treatment and cure for leukemia. 50 years ago, if I had been diagnosed with this same disease, I would have been given a few weeks to live. Instead, I was given the rest of my life. I am forever grateful to each and every person that played a difference in making my full-length life a reality. 

Beyond the actual medical advances and treatments, what else is of utmost importance are the programs and support that were offered to me and my family during the difficult two years of treatment (and continue to be offered to me). They helped set me up with prior patients of similar age, therapists, conventions, books to read at the clinic, and many other “little things” that created a space and community that I felt supported and comforted by. This is why I have chosen to walk specifically with a the Young Adults Program Team which is a program I took part in and truly found a great sense of hope and help from. The funds that we raise during the walk will in turn go towards this program and allow for future patients to continue to have this offering as well. 

So here’s my ask, if you are available on September 25, 2016, please consider walking the 5K with me in honor of all those people affected by and living with cancer. If you cannot make the walk, I would so SO appreciate your consideration of a donation. Truly, any amount helps. If you can give $5, that’s amazing. if you can give $500, that’s amazing too. Every single dollar gets us closer to a world without cancer. 

And then we can do walks just to burn calories. 

Link to my personal page.

Link to join our ‘Young Adult Program‘ Team.

Link to donate!

Lots of love & light & gratitude,

Jess

6 Weeks In

Posted in My Stories by

I used to count how many months “down” I was. But tonight, I can say I’m a month and a half “in” and headed back to Dana Farber for the first time as a “graduated” patient tomorrow. It’s already been 6 weeks since I got my last dose of chemotherapy and my body and mind are finally beginning to truly heal. After two years of a tingly tongue and numbness in my fingertips, those underlying & continuous feelings have gone away. So have much of my fatigue, headaches and nausea are gone. I no longer have to stop eating two hours prior to going to bed because of a daily chemo pill. I’ve gotten to lift life restrictions.

I’ve had a dirty martini. 🙌🏼


I’ve eaten sushi.


I’ve gone in a public pool and hot tub and not worried about getting an infection.


And had a mani/pedi day with my best without worrying about going against doctors recommendations not to in order to reduce risk of more infections.


I’ve gone to the Red Sox game with friends and stayed out too late on a work night.


I’ve become obsessive over the new Beyonce album. (Download ‘Freedom’ and then try telling me she’s not my soul sistah)

I’ve done yoga and felt strong the entire time.


I’ve had a 24 hour get-away with Michael


I’ve lived six weeks of a “free me” and damn, it feels good.

I still have so much to work on and mentally get through; some days I’m good and some days I’m emotional. I still don’t know what I want to do with my life, I still don’t know exactly why I was given this second shot but I’m so grateful for it. I’m so happy to get to live my life!
Lots of love & light,

Jessy

I’m Free

Posted in My Stories by

Today, I cried some tears of joy but mostly, I smiled. I smiled because today I got my last infusion of chemotherapy. I smiled because I was told that after looking at over 1 million of my cells, ALL of them had been cleared of leukemia. I smiled because my nurse Andrea had a “Nuked the Leuk” shirt made for me. I smiled because there were 15 nurses and doctors waiting behind a curtain as I arrived to surprise me and give me hugs. I smiled because I was with Mike, my mom and my dad- the three people who were with me the night I was diagnosed and have been there for me every step of the way since. I smiled because I walked out of the doors of Dana-Farber and knew that it was my last time there as a patient. I smiled because I got given the greatest gift I could ever receive– a restored, renewed and beautiful life.

I smiled because my baby brother put together this video montage using pictures and videos that I’ve taken over the past two years. I had planned to post a bunch of pictures from today but I’ll do that later– right now this video has made me smile on the outside and on the inside.

Today, after 769 days, I crossed the finish line. Today, I was reminded of every single person that helped me get to this point- every friend, every family member, every nurse and doctor, every person who sent me a card or commented on my blog with well wishes- I thought of everyone. Today, I feel more blessed, more grateful, more humbled then I ever have in my life. Today I feel free… and I feel that because it’s true. I am free.

All my love & light,

Jessy

Meditating On Me

Posted in Inspiration, My Stories by

  

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

March 25th: A Day I’ll Remember 

Posted in My Stories by

The bone marrow biopsies are a thing of the past. It was a stressful morning as things got pushed back and I didn’t end up being taken in until 12:30. So while we waited, we took pics…obviously. 

  
Then I was taken in and I had to take a pic with my most fabulous doctor who has done all my spinal taps and all my bone marrow biopsies since the beginning. Not only is she the most fashionable lady at the Dana but she also is the absolute sweetest. 

  
Now it was time to get suited up- and tis the bunny season, I just had to…

  
So then it was time to chill with the silliness and get this thing some and over with!

   
 
Go time.

(Warning:this is a little graphic but Mike took it and I found it fascinating as I’ve obviously never seen it from this angle!)

  
And just like that, I took my last “big breath”, Susan pulled the marrow and it was over. I instantly started crying but it was tears of such joy, relief and gratitude. I felt so empowered and so strong in that moment. I have hated this procedure every time, I have always gotten so worked up before and after as I wait for the results. But the reality is, it’s out of my control now. I’ll get the results next week and I really feel deep in my heart that the leukemia is out of my body so the moment just hit me so hard, like WOW, I’m really almost done. The finish line isn’t around the corner anymore- it’s right there, I just have a few more steps until I cross that yellow line.

As always, Michael was there by my side. Today, actually holding onto my feet, but right there with me, making sure Halo was being played at the appropriate time and loving me with everything he has. I’ve said it before and I’ll say it again, I really am the luckiest girl in the world. 

   
 
With that, I’m making myself a bowl of ice cream and continuing to relax on the couch with my two loves for the night. Thank you for the millionth time to everyone who said a little prayer for me, I owe you big time.

Lots of love & light,

Jessy 

A Lot Of Worry but a Little Light

Posted in My Stories by

This week has been hard. Harder than expected. What I would’ve expected is pure excitement, pure elation that the road is coming to an end. But instead, I’m feeling overwhelmed with a mix of emotions, most of them being sad and scared if  I am being totally truthful. 

Tonight is no different. Tonight I feel scared and I feel anxious. Tomorrow I will wake up and go to the Dana for my last scheduled bone marrow biopsy. I always become really nervous before these procedures since I find them really painful but more than that, I’m nervous of the results. I won’t find them out until next week, but tomorrow will be my last “check” for leukemia. The “what if’s” are worrying me. Well, it’s not exactly plural- it’s singular- it’s “what if there are still leukemia cells in my bones, in my blood?” I literally don’t know what I would do and I can’t bare to imagine it, but I keep imagining it. 

The flip side is that if the results come back negative and there is no such leukemia in my body…….. Well, there are no words for that. 

As I walked into my driveway tonight, I smiled to myself as a small flower has finally begun to pop through the dirt and show its colors. I photographed this same flower two years ago when I had returned home from the hospital as it reminded me of new beginnings. Today, it once again reminded me of new beginnings and a renewal of hope that I so desperately needed. There she goes, Mother Nature making her presence known and love felt. Always remember to look for the little signs. 

  
If I could request it one last time, I’ll take all the good vibes, prayers and positive energy tonight that you can spare. 

All my love & light,

Jessy