One Year Ago Today

A year ago today, I woke up like it was any other day. Got dressed for work and headed to Framingham. That would be the last time I go to work for 11 months. Later that day, while sitting in a team meeting, I would begin to get shooting pains down my back and legs so bad that I could barely stay in my seat. I hurried back to my desk to try to walk it out but nothing worked. Within a few minutes, I found myself in a maternity room downstairs rolling around in pain on the floor and calling my mom hysterically crying. At that point, I would call my friend Amanda and ask her to drive me to the hospital. It was an abnormally beautiful February day (nothing like today) and we were able to put the windows down. I remember laughing and making jokes through the pain and putting my face towards the sun and really feeling it on my face, feeling the wind go through my hair. Although I had no clue what was about to happen, I remember the car ride so vividly and feeling a sense of surrealness while making our way to the hospital. We waited there for quite sometime and then my dad came through the door. We finally got taken into a room where I was told, for the what seemed like 100th time, that I just had back pain, most likely sciatica nerve pain. I was then brought into a room where I was able to start listing off the additional ailments that had been going on; nose bleeds, bruises, blood blisters, headaches. Quickly that got the attention of the doctor and they immediately wanted to take bloodwork. At that point, Mike had showed up. A few minutes later, my mom showed up and we both instantly started crying when she gave me a hug. It was like we knew, something was about to go wrong. Maybe our lives were about to be turned upside down. And then it was. A doctor walked in the room and precisely asked my family members to leave. I knew that wasn’t a good sign. She then sat down next to me and took my hand as she said the words that the blood work had come back and it appeared that I had leukemia. I was stunned. I didn’t cry, I didn’t hyperventilate. I was still…numb. I couldn’t believe what I was hearing, I couldn’t believe the words she had just said. And what I couldn’t do is tell my family. So that’s when I asked her to please call my family back in and be the ones to tell them. I’ll never forget the look on Mike’s face when she said the words that I had leukemia. It was the worst thing I had ever seen, and I think the worst thing I’ll ever see. It was a face of sadness, panic, pure worry. It was like looking in a mirror of what I was feeling. Then it all became a whirlwind. We had to pick a hospital to go to and my mom and I got in the back of an ambulance and I was rushed over to the Brigham. At that point, I had no idea that I wouldn’t feel fresh air for almost a month. I also had no idea that I was about to meet some of the most genuine, caring and wonderful individuals I would ever have the pleasure of knowing. One waiting for me in the emergency room. My very own angel, Dr. Mandy. She stood there as I got wheeled in and immediately took my hand and looked into my eyes. She could tell how scared I was, how overwhelmed myself and my whole family was. And she reassured us that everything would be okay. She held my hand the whole time she talked and told me that she was going to cure me, she was going to make me better. And although I had only known her for a few short minutes, I believed everything she said. I instantly trusted her with my life. I would then get taken up to a holding area for the night, that had a lovely metal toilet right next to my bed. That would be the first night that Mike would stay with me, he didn’t leave my side for the next 27 days. He would barely sleep that night. With plenty of drugs, I would sleep on and off the rest of the night and wake up the next morning to get hours and hours of tests done to see exactly what strand of leukemia I had. It’d be a painful, long day but a day that would end up telling me that, Dr. Mandy was right– everything was going to be okay.

That was all a year ago today. Last year when it was all happening, I knew what was going on, but I was in crisis mode, a shell of a person, just trying to do whatever I could to get myself better. I was surrounded by family, friends, nurses and doctors at all times so there wasn’t that much time to reflect. A year later, and I feel like it’s important for me to remember exactly what last year on this day entailed. It almost doesn’t feel real that an entire year has passed. It was by far the hardest year of my life, most trying and difficult time I’ve ever experienced. But I also learned so much about life, about the wonderful people in mine and the things that are truly important. Things I never would’ve realized without this journey; it’s a journey I never would have asked for but as I march through it, I realize that I’m so blessed. I’m still here a year later, I’m about to turn 26 and all my labs look great. What more could I ask for? Absolutely nothing. Because if there’s one thing I’ve learned, it’s that health is everything. Today is a sad day as I reflect on how my life changed so drastically but it also is a good day, I’m so much healthier than I was a year ago today. I’ve made it so far in a year and I have so much to be thankful for.
Thank you from the bottom of my heart to all those who have reached out with kind words, prayed for me, sent me positive vibes, cards, care packages, and simply shown me love in the past year. I cannot tell you how much it has all meant to me and what a difference it truly made. I love you all.
XOXO,
Jessy
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Glorious Life

I did something stupid today. I clicked and clicked and clicked through old pictures on Facebook. One by one I went further and further back in time. It was like sinking into a hole. A hole of memories of fun times, times with my family and friends and even coworkers that I want back so bad. Looking back at these pictures make me smile because I’ve had such an amazing life but they bring me down as well because I miss that life so much. Mike and I used to always say we have such a “glorious life.” After fun weekends and things we’d do together, we’d always look at each other and say “ughh glorious life, glorious life!” Today when I was scrolling through the pictures, I realized we haven’t said that in a long time. And that, that made me sad.

I haven’t written a post in a week and that’s because I’ve honestly been busy! My amazing mother has taken time off of work to be with me during the days. She did it for two reasons, one being that I’m connected to a feeding tube for 14 hours at night and I need help getting disconnected in the morning. Second and honestly more important is to just be with me during the day so that I don’t have to be by myself all day, everyday. I was trying to make it work but spending all day by yourself is draining and depressing so having her here has made a huge difference. We’ve gone apple picking, painted our nails, visited with my niece, done some shopping, baked breads, gone for long walks and this morning we even went to a fashion show at Saks Fifth Avenue (boy were we rubbing elbows with the other half!). I’m so lucky that she’s able to do this for me.
Keeping busy when I can and having my mom with me has made my days so much better. They go by faster and I’m happier getting to interact with people and getting to spend so much quality time with my mom. But our “glorious life” still feels like it’s on pause right now which is hard. There’s an empty, bland sort of feeling you get inside when you don’t feel like you’re living your life to the fullest of potential. In reality, I know that I’m not “not living life to the fullest of potential” (because God knows i’m trying) but sometimes it feels like that when I’m stuck at home or sitting in the waiting room of the hospital (which is 75% of the visits). There’s just so much time waiting, sitting, resting, that my mind begins to wander off to what my life was or used to be. But as my mom reminded me today, I’ll get it back. It’ll never be the same but maybe it’ll be better. I’m going to keep on fighting, with the help of my family and friends, until saying “glorious life” is back into my repertoire of weekly phrases.
XOXO,
Jessy
here’s my crazy but incredible mother. aka Mom-cologist!
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Twists & Turns

At 25 I never expected to know what it’s like to have a catheter put in, but I do now. That’s what happens when you gain 45 pounds in 2 days and physically can’t get out of bed.

Last Wednesday, I had a long day planned for the hospital. I was to go in, get my bone marrow biopsy and then another round of the chemo cocktail. But I was happy because that night, there was a pizza party planned at our little palace as one of my best friends was in from Chicago and staying with Mike and I. Unlucky for me, the pizza party never happened. I had known it would be a long day, 8 hours maybe, but little did I know hours would turn into days/weeks before going home. My mom held my hand as the biopsy was conducted and when it was all done, we went to the “infusion” area to get set up for chemo. Quickly I started getting bad stomach pains that grew into horrific, stabbing pains all over my abdomen. So with that, my mom, my nurse and my doctor rushed over to the ER where we discovered that I had acute pancreatitis. Unlike an appendix that you can just remove, you need your pancreas to live. So the only “cure” is to get on massive pain killers, stop drinking and eating and get absolutely drowned with fluids. I’m talking pumped with so much fluids that I went from 114 pounds Wednesday morning to 160 by Friday. (“Buzz’s girlfriend…WOOF!) As laughable as it is that I gained that much weight, it unfortunately is extremely painful and made me unable to move, stand or walk by myself. Saturday I stood for the first time with lots of help. Sunday I stood for longer and Monday I got a walker to begin to walk again. It’s unbelievable how your body can change so dramatically, so quickly but it can. The good news is that over a week later, I’m recovering nicely and the doctors are proud of how far I’ve come in a short amount of time.

The most frustrating part about this is that the cancer didn’t cause this. This wasn’t one of the shit weeks I’d planned for. This happened unexpected and is a rare side effect that can happen as a result to one of the main forms of chemo that I have been receiving and was planned to continue on for for the next few months. Now, however, I won’t be able to get that kind of chemo because the risks are just too great of this happening again and the outcome being more dramatic than a 45 pound weight gain.

I like to think that I’ve gotten good at taking what life throws at me but this is a hard one to shake. I mean, not to be a baby, but isn’t leukemia enough? Why’d I have to also get pancreatitis? Do I not already have enough restrictions in my life that it was necessary to now add extreme dietary ones? Have I not been poked and prodded enough or did I really need to have more things stuck into me? It just seems so unfair. I feel like I got struck by lightening and then a cat came and pissed right on me. Just so unnecessary.

But unnecessary as it seems to me right now, that’s life and I’ve gotta roll with the punches. My new goal is getting out of this hospital (although I was lucky enough to get back on the best floor in town and have the best nurses in the entire world. Kristen if you’re reading this, THANK YOU AGAIN, you an angel!) and get back to my bed and my life.

I’m off to have some chicken broth for breakfast. Thanks for letting me vent and I’ll end on a GREAT note: in the midst of everything going on this weekend, my doctor came in with the results from my bone marrow biopsy on Wednesday and my marrow was completely clear of any leukemia cells!!!!!!!!! THANK YOU GOD!!!!

Xoxox,
Jess

PS here’s a highlight of the week
when my niece came to visit after not seeing her in over a month!! (She was being a world traveler instead of hanging in Manch, NBD)

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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.

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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’!

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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.

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XOXO,

Jessy