My heart was so full yesterday as I was able to bring 150 Smile Cards to The Brigham. What’s even more amazing is that I had just brought a ton about two weeks ago and I know I have about 50 more to bring next week!
Before I left TJX, I sent out an email to the entire marketing department asking for their help in my little task, especially going into the holiday season as I wanted to be able to bring many cards as this is an especially hard time to be “locked” up there. I had thought it’d be nice if I got a few of them, hoping some people would be motivated enough to write up some. And then I got this picture….
The entire HomeGoods creative team, crafting and putting together some of the most beautiful smile cards that I’ve ever seen!
These came in a box FULL of cards. Full of different kinds, different sayings, different notes but all the same sentiment– love and compassion. One of the amazing employees there had put a box out in the common area and encouraged people to write a few and simply drop them in the box. I couldn’t believe it. SOOO much more than I expected but what an incredible surprise!
And THEN I get an email from a co-worker who let his sister (who’s a teacher) know about the initiative and she wanted to get involved. So I’ve since been in contact with this amazing lady who’s gotten her class to do it and has enlisted many of the classes throughout the school! I couldn’t be more ecstatic!
To all my friends, Michael, my family (and my moms school!) and all the TJXer’s and the family and friends they’ve gotten involved in this little initiative… THANK YOU. From the bottom of my heart, I am so grateful for you taking the time to bring someone else a smile, to remind them that they’re not alone in what is obviously an incredibly difficult time. You’ve chosen to make a difference in a strangers life and that’s truly a beautiful thing.
When I was diagnosed with leukemia on February 20, 2014, I had a doctor that held my hand and looked me in the eyes and told me that she was going to fix me. From that very first moment, I was terrified but I had a sense of hope. That sense of hope has been the crux of my strength for the past 2 years. Hope that I will survive this…hope that I will get my life back…hope that I will live to have my own children. When someone is diagnosed with ALS, there’s no such hope. They are told they have most likely 2-5 years to live in which they will gradually lose their abilities to do almost everything except for think. They are told that they will no longer have the physical capability to breathe on their own, but they will have the mental capacity to know exactly what’s happening. They are then told that there’s currently only one treatment for this disease and that it will likely extend their life 2-3 months. 2-3 months, that’s it.
I want these people to be given the same hope that I was given. They deserve it. That is why I am so humbled and honored to be working for ALS TDI, an organization that is entirely focused on research to help #endALS. An organization that is working tirelessly to help give these incredible individuals the hope they so deserve.
Today is #GivingTuesday. It’s a day to remind ourselves of what this time of year is truly about– not deals on Black Friday or Cyber Monday, but giving to those we love and to those in need. I ask that today, even if just $5, you donate to ALS.NET and help us towards our goal of finding a cure for this terrible terrible disease.
My first pancreatitis attack happened on August 13th. It’s now November 14th. That’s three hospital stays in the books, about 100 pounds in fluctuated weight, an incredible amount of pain medication down, a stent placed into my pancreas, two months behind on my chemo regimen and three months in the past of simply not eating or not eating the foods I want to eat. In fact, right now, I’m unable to eat anything but “clears” for the next two weeks (clears = broth, apple juice, jello, water). It sounds unenjoyable but not the end of the world, right? I would have guessed that too but not being able to eat is more than that. I’m having such a hard time with it because it’s something that I enjoy doing so much. I enjoy cooking it, I enjoy snacking on it, I enjoy going out to restaurants with my boyfriend and friends, and I enjoy eating it! Food was one of the last things that not much had changed since my diagnosis. And I so revelled in that. So the fact that it got taken away from me just seems unfair. Now, instead of eating, I have a feeding tube that I attach to every night for 14 hours. Not exactly a pasta dinner.
In general, these past few months have left me really down. I’ve been in the hospital 45 days of the three months which is nothing short of miserable. Being in the hospital is a mind game. It’s draining and sad. You become like a hamster. For the majority of the time you’re kept in your little cage where people are constantly coming in and out to either visit, poke you with something or give you medication to take. The latter is my favorite as it hopefully will make me sleepy and I can dose off to kill an hour or two. If I’m being honest, sleeping has become one of my favorite things to do in these past few months because it takes me away from everything. I know that doesn’t sound very inspirational but it’s the truth. Trying to stay positive and keep my spirits up has proven to be harder recently than it had been in the past. I think it’s a combination of this big bump in the road I’ve had (aka pancreatitis) and also the sense that I’ve been at this for almost 9 months now and I still have so much further to go. Today, however, my mom and I are staying in our pajamas all day since it might snow and making Christmas crafts for the holidays. It should be fun and I’m grateful to be out of the hospital and doing something I enjoy… crafts! Now, if I can just get to eating by Thanksgiving, I’ll be making positivity strides all over the place.
Much love for listening to me vent… I had to get this one out.
This blog post I’m going to come off as a real lush. I’m pissed about not being able to drink; plain and simple. So if you think that’s wrong, click the X button now.
Yesterday was Cinco de Mayo and I wanted a Caronarita. Bad. Unfortunately for me, it will be 2016 until the next time I’ll get to suck down one of these festive yet aggressive drinks. This holiday comes on the heels of a weekend that I got really bothered about not being able to have an alcoholic beverage. Mike and I went to a wedding in NH. I was so excited for it…. so excited to be out of the house (and not at the hospital). So excited to use the jacuzzi so that I could put some use to the bathing suits originally purchased for our Domincan trip. It was so fun to get dressed up and see a bunch of friends. The ceremony was beautiful, bride looked so angelic and the groom was grinning from ear to ear- it was a magical moment to watch. Then the cocktail hour started and the drinks began to flow. Okay, I thought, no big deal. Then we sat down for dinner and there’ a glass of champagne in front of each plate. Ugh, maybe I can have just one sip? I’m a few days off chemo and have a few days before the next round. One sip it is. Woopsies, that made it way harder. I wanted the whole glass. But one sip is all I knew I could “sneak.” And then the drinks continued to come flowing all around me. Everyone was indulging, as they should be at a wedding, and I slowly became saddened by the situation. I enjoyed dancing with my boyfriend who goes borderline insane but phenomenally impressive on wedding dance floors. (It’s almost like I’m dating Vince Vaughn from Wedding Crashers.) I was honestly having fun and enjoying this special night but as everyone else around was getting tipsy, it ate away at me that I “couldn’t,” that I’m not “allowed.” I decided not to go to the after party and just head back to our hotel room after the wedding ended. I laid in the bed wanting to go downstairs to the bar but couldn’t push myself to do it. So instead, I laid in bed and thought a lot about why the absence of alcohol in my life is bothering me so much. Coming up with an answer didn’t make me necessarily feel any better but I started realizing that I think it relates to the importance of being part of the group. I’m bothered about not being able to drink because it makes me feel isolated, it’s a reminder that I’m not a normal 25 year old right now, it’s a reminder that I’m sick, it’s a reminder that I can’t just do whatever I damn well please. And you know what? I like to do what I want to do, that’s for absolute sure.
Honestly, I have felt embarrassed or ashamed about really communicating how sad or left out I feel about not being able to have a drink. It’s easy for me to say “oh well, shouldn’t be my biggest priority right now” or “things could be worse.” And those both are true, but the reality is it’s harder than that. The reality of actually hanging out when everyone else is drinking is not the easiest, or the funnest and it’s going to be like this for two years. That’s a long time to feel like the odd man out. At this point in my life, having some drinks with friends is a huge part of social life. Whether it’s Harpoon Fest, having Sunday Funday bloodies, beers at the Sox game, tailgating before a summer concert, or having a Caronarita for Cinco de Mayo, lots and lots of the events that go on outside of work consist of drinking. And I’m not looking forward to not taking part in these things for the foreseeable future.
Tomorrow morning I head to Dana Farber and will be admitted at Brigham & Womens later in the day for my next round of chemo and will stay for five days. Definitely not looking forward to being in the hospital for five nights but hey, I’m guaranteed that there’ll be no temptations. I mean, unless my nurses decide to celebrate National Nurses Week with some cocktails.