Walking for the place that saved my life. 

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

Advertisements

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