Tag Archives: cancer

First Day Down

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Today was my first day back to the working grind. It was for sure a mix of emotions. It felt just like the first day of high school, I was anxious all day yesterday, could barely sleep last night and then the day came. I had trouble getting myself out of bed in the morning, not because I was too tired but because I felt so overwhelmed at what the day would bring. But get out of bed I did and to Framingham I headed. As I walked into my cube this morning, everything was just how I had left it 11 months ago. The new 2014 calendar was still up, “Punta Cana vacation” highlighted March 7-14, cereal in my drawers, and my trusty heating pack still sitting on my desk as I had been using it to help ease my back pain (soon to find out it wasn’t exactly “back pain.”) It was surreal. Nothing had changed but everything had changed. I’ve worked 11 months to get back to where I sat today, I’ve gone through what feels like hell and back to get my life back. But it hit me as I sat there at 5:30 with the lights starting to dim that I’m not getting my old life “back.” I’ve got a new one, a very different one than the one I had left. One that is filled with much hope, determination, fear, anxiety, love and fight. I still have a long way to go, about 15 months more of treatment to be exact. There will be good days and there will be bad days, but as Mike reminded me last night, if I can get through what I’ve been put through in the past year, I can make it through a few stressful and tiring days of work. Just need to put my head down and tough it out. I might be be small and fragile looking on the outside, but I’m a warrior princess on the inside. And warrior princesses can do just about anything.

So tomorrow, I’ll be back at it again…back in my cube, back in meetings, back on emails and back on social media but I’m back with a little chip on my shoulder and a lot of things to prove, not just to my colleagues but myself.

Bring it.

XOXO,

Jessy

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Boo to YOU Bone Marrow Biopsy

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Here waiting in the procedure room to get my bone marrow biopsy. I’ve got my healing stones in one hand, lucky crystal in the other and my “pump-me-up” playlist on and loud. It’s time to crush this bone marrow biopsy! Then I’ll be off crush a spinal tap. Then lastly will be crushing my special chemo cocktail! And THEN, I’m gonna call it a day!

Pray for good test results!

XOXO,
Jessy

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My Year in Review

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As 2014 was quite the unexpected year for me, throughout the year, I decided to take videos and pictures of myself while home alone to document what my thoughts and feelings were on a day-to-day basis. I’ve made a compilation video of some of these images and clips of the videos to share with all of you who have so kindly followed my story all year.

Thanks to each and everyone of you for your support, kind words of encouragement and love throughout 2014. It has made all the difference in the world.

XOXO,
Jessy

Hard Times, Good Times

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I started writing this blog post last week and never finished. I went back and read it this morning and realized in one short week how things have already changed. Here’s what I wrote…

“The past four months have probably been the worst four months of my life. Not the most uplifting way to start a blog post but it’s the truth. During these months, I’ve struggled to stay positive and truly feel happy. Partially because of the unexpectedness of the pancreatitis. It seems so unfair that I would get that on top of leukemia. Because other than that my chemo caused the pancreatitis, it has nothing to do with the cancer. It’s only delayed my treatment, caused me a lot of pain and laid me up in the hospital three too many times. …. even when I’m doing “fun” things, my mind races to that things aren’t normal. That I can’t have a drink. That I can’t have a french fry. That I have to be home early to hook up to a feeding tube. That I’ve simply been hooking up to a feeding tube for over two months now. That I’m not at work. The list goes on and on. 
 
I’m hoping that the end of this funk is coming near as sometime in January I’ll be FINALLY going back to work and I think that will help immensely. But I wanted to write this blog post so I remember how I felt at this moment. These days are long and tiring. Each day I feel different, whether it be emotional or physical. I have a hard time sleeping and my mind always seems to run back to “i have cancer.” I spend half the day sleeping and another portion watching TV. I can’t take that anymore. I want to do, I want to be productive. But sometimes it’s too hard, I’m too tired. Today I was tired. I got out of my pajamas at 4 o’clock to run to the grocery store to get things for Thanksgiving. I love being in pajamas but when that’s all you have everyday, getting dressed up becomes a privilege. Overall, things have just been really tough.”

Well it’s funny what a few days, family, friends and good food can do. I had the best four days I’ve had in a really long time. Thanksgiving was wonderful as I got to see my whole family and grandparents and snuggle with my love bug of a niece. Then Friday I got to see a bunch of my best friends from high school at a fabulous Friendsgiving party! Saturday, Mike and I got our Christmas tree and started decorating for Christmas (my ballerina reindeer are up which makes this girl VERY happy). Then we headed out to a housewarming/birthday party at one of our good friends house which was a blast. Sunday we just stayed around the house and decorated for Christmas, made some turkey chili and watched the Pats. It was a busy but perfect few days and it was just what I needed to help get me out of that funk. I felt so happy to see my friends and family and get to spend four days with Mike. Times like this weekend I’m reminded why I’m so blessed. It helped change my mindset and brought me a sense of happiness that I haven’t felt these past four months. There are still hard days ahead (most likely a lot of them) and I will have to keep working on feeling normal and feeling happy but I’m thankful for last weekend as it brought both those things back into my life.
XOXO,
Jessy
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Tomorrow, Tomorrow, I’m Excited for You Tomorrow

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Tomorrow I go to the Dana. I go every Wednesday and I never look forward to it but tomorrow, tomorrow I’m excited. Weird to say that I’m excited to head to the hospital but I’m hoping that tomorrow is the start of a long stretch of pain coming to a close. I meet with my pancreatologist and hopefully get the all-clear to begin eating again. Now I know it won’t be an “eat whatever you want” conversation but even being able to have a fruit smoothie or grilled chicken breast will be such a big deal. Like I’ve said over and over, I’m so hungry. Hungry and beyond crazy with cravings. All I can think about is food…sandwiches, pizza, angel hair pasta, sushi. I’m a ways away from all that but a girl can dream. I also start on steroids tomorrow for five days which make me absolutely insane when it comes to eating. They make me so hungry and able to eat like a growing football player. So tomorrow as I meet with my doctor, I will be putting on my persuasive pants and begging him to allow me to start my journey back to the real world of food. Wish me luck.

Tomorrow also marks the restart of my chemo regimen. I’ve been paused for two months because of the pancreatitis but tomorrow I start it up again. It will feel good to restart as I have been worried to be off my planned track for this long…for obvious reasons. Chemo’s no fun but progress is. The start of this next round of chemo means I’m one step closer to getting my life back, one step closer to being cured. And those things are something to be excited about, really excited about.
XOXO,
Jessy

Sick Day

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Today I’m taking a sick day. Mike is playing in a golf tournament and is gone all day and I have no plans. I haven’t had more than an hour or so by myself since September 3rd, the day I got pancreatitis #2. Combo of being in the hospital, so never having a second to yourself because a nurse, doctor or specialist is coming in to talk to you and now at home my mom comes every day and typically stays till when Mike gets home. (don’t worry mom, that doesn’t mean I don’t love having you, because I LOVE having you!) But sometimes it’s good to have some time with just yourself.
It’s hard not to feel like everyday is a sick day for me lately. I’m home, my mom’s taking care of me, I don’t feel good, I’m taking a bunch of medicine. Sounds pretty similar to a sick day from growing up. There’s always something a little enjoyable about staying home from work or school even when you’re not feeling well. You feel lousy but you love getting to stay in jammies all day and watch the Price Is Right. But when your sick day is going on 9 months, it loses its enjoyability. Today, however, I’m choosing to stay in my pajamas and watch trashy TV with just ME all day. Cancer or chemo didn’t make me stay in, I decided to stay in and that’s why it feels different, that’s why it feels fun! So before I exert too much energy, I’m heading back to lounging!
XOXO,
Jessy
p.s. look at these ridiculously amazing slipper socks I got at TJMaxx! I shall be in them all day.
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Pain & Plateaus

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It’s my 25th day here at Brigham & Women’s Hospital. I’m about to tie my first stay, something I never thought I’d do. I’m so drained. I feel mentally and physically exhausted. I haven’t had a meal in almost a month and haven’t even had anything to eat in a week. How is that possible you ask! Because I’m hooked up to a feeding machine that will go home with me when that day comes. It’s been hard for me to put the way I’m feeling into words because it’s like what’s there to say? I’m still here. Still in pain. Still yearning to go home more than anything. Plus, I have been on so much pain medicine that it’s literally hard to put my thoughts into words. I notice this when I’m texting and it takes me 5 minutes to get out a 2 sentence text.

This stay feels different because it came on so unexpectedly. I was home alone on a Friday and I started getting the same stomach pains I had experienced with the pancreatitis a few weeks prior. I called Mike who then called my doctor who then called 911. In a matter of minutes the fire engines and ambulance was at my house and I was hopping into the ambulance. One perk I will say about taking the ambulance at 5 o’clock on a Friday are those sirens. You get there quite a bit faster than doing it yourself, it’s nice to have everyone move

for you. When I got to the emergency room and then ended up telling me the pancreatitis was back, I felt so overwhelmed. I’d already dealt with this. I was just in the hospital for pancreatitis. How could this be happening? I’ve listened to everything the doctors had told me to do. But it’s what happened and it wasn’t anything I had done wrong but simply bad luck. What was to come in the next three weeks would end up being three of the hardest weeks of my life. I gained 40 pounds again and I was unable to walk or get in or out of bed by myself. I felt like a tractor trailer had run me over…I was in so much pain. And to make it worse, I’ve been unable to keep even water down. All these things meshed together and all I could feel is frustration and anger.

I don’t know what else to say but I’m glad I got out everything that’s been going on and how I’ve felt in these past 3 1/2 weeks. It wasn’t a happy post, I know, but it’s real and it’s how I feel. Thank you for listening to me and letting me vent.

xoxo,
Jessy

Ps since writing this post, I’ve found out that I am scheduled to go home tomorrow!!! Wahoooo! Looks like I should’ve written this post sooner!!!!

Here’s a pic of a highlight of my stay!

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Music Miracles

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Early in the summer, Jessie and I bought tickets for the Sam Smith concert that would be at the House of Blue. It’s something I’ve been so looking forward to as the venue is awesome, the artist is incredibly talented and it would be a fun “night out” with one of my best friends (something that doesn’t happen nearly enough anymore). So as the days creeped closer to September 15th and I did little to no improving here on 7D, it became clear making it to this concert was going to be a stretch. However as soon as I mention this to my wonderful team of doctors, nurses (and Mike), an action plan is sprung into place. House of Blues is called so we can get disability seating since I’m constrained to a wheelchair right now, Mikes boss (who’s a frequent goer of the HOB) reaches out directly so Mike can be given a free pass to come in and be able to assist me getting settled, my social worker calls the venue to get an exact time of the setlist so I can maximize my time out, my doctors and nurses do a bunch of extra paperwork to allow me to be “discharged” for a set amount of time, and my dad who stayed in Boston until 1030 at night so that he could drop us off and be right outside the door when we got out to drive me right back to the hospital.

There was so many people that went into making last night possible for me. Something that I arguably will be able to do plenty of times in my life. But last night was different. I had been looking forward to this night with my best friend all summer. So if I hadn’t gotten to go, cancer would’ve taken that away from me. But the amazing people I have surrounding me didn’t let that happen. So many people went into making last night a reality for me and it warms my heart to know they all did it for nothing other than my happiness. That’s pretty incredible. That’s a mini miracle. That shows you that people are good….people are kind, and thoughtful and considerate. I am truly lucky to have been able to witness something like that first hand.

So to everyone who made last night such a special night for me- thank you! It’s just what I needed to keep on pushing forward!!!

Xoxox,
Jessy

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Last Chance to Help Me Raise Funds to Put an End to Cancer

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Less than a week until the 2014 Boston Marathon® Jimmy Fund Walk. I signed up to complete the 5 mile course with many of my family and friends. It’s a cause that is obviously extremely close to my heart as it raises funds for an organization that has literally saved my life. An organization that has gone so above and beyond in their care, it astonishes me everyday and I am forever grateful. In addition to helping fund the incredible Dana-Farber Cancer Institute, the monies raised will also go towards groundbreaking new research and clinical trials that are necessary to finding a CURE to this horrible disease we call cancer.

Currently, I’m on day 10 here at the Brigham due to my second flare up with pancreatitis and am still unable to walk much farther than to the bathroom without needing to use my walker. My legs and stomach have swollen so much that I am weighing about 40 pounds heavier than I should. So I’m getting a bit concerned about my 5 mile adventure being less than a week away. However, I made a commitment and I am determined to follow through with that commitment. I will cross that finish line, one way or another.

So here’s what I am asking of you– please make a donation to this wonderful cause. No amount is too small because it all adds up and all makes a difference in putting an end to cancer! If you’ve already donated to my page, thank you. Thank you from the bottom of my heart, I cannot tell you how much it is appreciated.

http://www.jimmyfundwalk.org/faf/donorReg/donorPledge.asp?ievent=1086390&supid=410333929

XOXO,

Jessy

Hunger Pains

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I’m so hungry. Literally, all I can think about is food. And that’s because I can barely have any.

Tomorrow will be two weeks since I got pancreatitis and one thing I learned is that it’s no joke and it’s no fun. I’ve been home from the hospital for 3 days now and my stomach is no better than it was a week ago. There’s a constant feeling of uncomfortableness that hums throughout the day and then after I eat I get sharp stabbing pains. This type of suffering would maybe be worth it if I was eating delicious food… pizza, nachos, mac n cheese…. things of that nature. But instead I’m only allowed to have low fat, fat free and dairy free. Things in the realm of low-fat soups, saltines, fresh fruit, steamed broccoli, grilled chicken.. none of the above are worth a painful aftermath. I’m still not sure how long that regimen will last but I was told that it could be up to a year until I’m fully able to eat everything I once was. Here’s to hoping it doesn’t take that long. I’m a buff chix nachos type of girl and having that taken away really bites the big one.
Although my thoughts are being consumed with “I wish I could eat this” and “Ughhh my stomach hurts so bad,” I also am thinking about what tomorrow will bring. Tomorrow is another big day as I meet with my doctors about where we go from here. Since one of the main chemotherapy drugs that I have been on is what caused the pancreatitis, the risk is too great to continue on with that specific drug. I was scheduled to get ten doses and I had only gotten four so far meaning I won’t get 6 of the scheduled treatments sessions. And not finishing up a session of my treatment plan, well that’s scary. Scary because if that’s what my doctors knew to be the best chance of beating this, what does it mean now that I won’t be getting them all? Hopefully there are alternative drugs and avenues we can take but it definitely makes me nervous to think we’re not going with the strongest option. So tomorrow I’ll once again be at the hands of my doctors.
On a positive note, I’ve been working on a homemade chicken noodle soup all day that I will be having for dinner tonight. The chicken is shredded, the veggies look soft and I used whole wheat egg noodles that look delicious. So cheers to it turning out good and me getting a yummy meal in my tummy.
XOXO,
Jessy
p.s. in honor of being unable to crush food, here’s a pic of me mowing two breakfasts before treatment a few months ago!
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