A Language We All Understand 

Running is like music– it is a language everyone, no matter what race or religion, can understand and appreciate. 

As always, I am so inspired by all the runners in today’s Boston Marathon. I salute you all, your hard work determination and dedication to complete such an accomplishment is awe-inspiring. #BostronStrong through and through. 💪🏼

Here’s a wonderful story about a woman who has ALS but is celebrating surviving her 5th year post diagnosis by completing the marathon. UNBELIEVABLE! 

  
http://www.myfoxboston.com/news/woman-with-als-gets-new-running-chair-for-marathon/221372028

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

 

Boston Strong Forever: My Reflection 1 Year Later

One year ago today I woke up like a kid on Christmas morning. It was my first ever Marathon Monday. I had heard so much about this day and all it’s wicked glory. As a kid who grew up in New Hampshire and went to school in Florida, I had never gotten to experience the excitement and pride that this day brings. My Beacon St. apartment was directly in front of the mile 23 marker— my first floor living room window looked right out onto the street as the runners pushed through the final few miles. Our apartment was filled with mimosas, buffalo chicken dip (and an endless array of unhealthy snacks), jello shots and of course, an ice cold keg of cheap beer. It was a party and I was THRILLED to be a part of it. April 15, 2013 was a beautiful day for a race. Blue skies, a slight wind, and sunshine. A perfect day for a celebration. With a red solo cup in hand, I stood with my girlfriends on the sidewalk cheering on all the participants. I had never been to a marathon before and I truly was blown away with the strength of these participants. By the time I was seeing them, they had run 23 miles— 23 miles!!!— it’s a feat I really can’t even fathom. One of my favorite moments of the day came when a group of military men and women marched by. As they passed with an American flag being held high and proud, the crowd starting chanting, “USA! USA! USA!” I felt such a sense of pride in that moment…not only proud to be an American but to be a Bostonian. During that moment, I remember looking around at all the bystanders and all the runners and really trying to take in what is so special about this day. It’s Patriots Day. It’s Boston’s day. And for the first time, that meant it was my day too. It’s all of our day.

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I had just finished babbling on the phone to my mom about what a fun and fabulous day I was having. Probably a bit too much fun for a Monday afternoon but then again, it was my first Marathon Monday so what else do you expect?! Then this day of excitement, pride and joy became a day of tragedy. I was outside at the time and people from inside the apartment yelled for us to come in and see what had just unfolded three miles from where I was standing. An act of pure evil had just happened. Quickly a house full of people drinking and laughing became a house full of people surrounding a television, silent and crying. After a few minutes, we began bringing runners inside to give them water. Our apartment was suddenly full of a lot of people I didn’t know but it didn’t matter. We all had the same thoughts, feelings and emotions. A bunch of strangers became one. A city became one. And one act of evil had created hundreds of acts of greatness.
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The days following the Boston Marathon were strange. The suspects had not been caught and everyone in the city was on edge. Walking to my car the next morning, there were armed military men at the T stop dressed in bullet proof vests and carrying enormous rifles. I hated it. That’s not what I should see on my way to work, I thought. That’s not what anyone should see on their way to work. It felt un-American. On Friday April 19th, after being in a lockdown all day, completely glued to the television and truthfully frightened, the ban was finally lifted in the early evening. Mike’s brother and sister-in-law had just had a new baby girl two days prior and we had planned to meet her that night. So we jumped in the car and sped off to Newton Wellsley Hospital. After being greeted by an army tank and having our car searched, we parked and ran upstairs. The moment we were walking in the hospital door, “suspect #2” had finally been located and was being handcuffed and taken away. I felt so much joy from this news, so much relief for our city and for all those who had been directly affected by their cowardly acts. I couldn’t stop thinking about how I hoped he and his god awful brother rot in hell. I felt such anger, such hateful thoughts towards these so-called human beings. And then, just when I was feeling such nasty and almost barbaric emotions, we opened the hospital room door and were greeted with a miracle; the best humanity has to offer…a beautiful, healthy baby girl. Cheeks rosy, skin soft and eyes filled with innocence. She was perfect. She didn’t know the horror that had ensued on Monday or the anxiety ridden week that had just finished. Because she was just a baby— a baby born into the most spectacular city, with her whole life ahead of her. I’m so grateful for seeing her that night because that angelic little baby unknowingly took away all the negative thoughts in my head and replaced them with hopeful and happy thoughts. Baby Tori won — baby Tori won against two terrible terrible monsters.
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The morning of April 20th, I think the entire city breathed a sigh of relief that April 19th was a day of the past; I sure did. I felt relief but also felt a sense of urgency to go enjoy the magnificent city that our law enforcement had just risked their lives to protect. So I strolled on down to Newbury and walked my favorite street in America. Then I headed over to the Boston Public Gardens filled with flowers that were blooming magnificently and signifying the start of Spring. And then, with a heavy heart, walked to the edge of Boylston, to where a memorial had popped up honoring those lost and injured in the marathon, to pay my respects and say a little prayer. It was a special day in an even more special city.
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The week of April 15, 2013 taught me a lot. It taught me that life can take unexpected turns so you should always enjoy the present because who knows when it can change. It taught me what a fabulous day Marathon Monday truly is— and to never, EVER not take it off from work (it’s so worth the vacation day). It taught me how much we need our law enforcement and military. It taught me that good always prevails over evil. And it taught me that Boston is truly the greatest city in the world.
#BostonStrong- yesterday, today and always.
XOXO,
Jessy