Category Archives: My Stories

Back at it Again

Posted in My Stories by

On Thursday I found out that my pancreas had suffered a leak in it during the first two pancreatitis attacks. So my doctors quickly scheduled an endoscopy procedure for the next day to place a stent where the hole is. I was so nervous about it as I hate being put under and I’m anxious about a foreign object being in my body. But I trust my doctors so I knew it was what I had to do. Friday morning came quickly and with Mike by my side, I had a stent placed in my pancreas. Everything went smoothly and the doctor was really pleased with how the procedure went. I was even able to go home that night in time to pass out candy to the trick-or-treaters!! (Huge deal to me cause I had been really looking forward to that so I would’ve been really sad if that got taken away from me). Anyways, Saturday morning I woke up with intense pain in my stomach, I was rolling around and just could not get into a comfortable position. So I took pain meds that typically help and waited an hour. No such luck. After a call to my oncologist, Mike and I were on our way to the emergency room (which was filled with drunk halloween goers. Woof). My hope was that I would be able to go in, get some IV pain meds and head home but that wasn’t the case. After being in the emergency room for 6 hours, I got admitted, again, to the Brigham 7D. I am so frustrated because I had been doing so well. I was eating, my nausea was starting to go away, and I was overall just feeling good. So being back in the hospital bed hooked up to 100 different machines and unable to drink or eat…I feel more than discouraged.

On the bright side, it’s freezing out (I saw snow flakes out my window-ahhhhh!!!) and I’m inside all day. My amazing doctor made me two “pancreatitis” playlists to listen to (how sweet is that?!) My family and Mike have been by my side the whole time. And I got onto my favorite floor which makes things so much more enjoyable and comfortable. Definitely not an ideal situation but I’m trying to positive because things could definitely be worse.

(Here’s a pic of me and my TPN feeding tube at home! Fun, fun, fun!)

IMG_5966.JPG

XOXO,
Jessy

PS this is not a pic for the faint. So if you don’t like bodily functions, I’d X out now. But below is a pic of my pancreas before with the hole (on the left) and it now with the stent in it (right side). I thought it was pretty cool so wanted to share with you guys!

IMG_5990.JPG

When Life Hands You Apples, Make Applesauce

Posted in Inspiration, My Stories by

Just before my first pancreatisis attack, I met with a few girls from work for coffee. It was so great to see them and feel a part of the team again. They had asked to get together so they could give me something a whole group of people had put together for me. As many of you know (and working with me every day, you can imagine how much they heard about it!), Mike and I had a trip planned to the Dominican in March. Unfortunately, I was diagnosed just a week and a half before and we weren’t able to go. Really, really disappointing. So my coworkers, being the amazing and thoughtful people that they are, all chipped in to be able to send Mike and I on a little get-away weekend to Peaks Island, Maine to make up for it! Peaks Island is right off of Portland and Mike and I had discovered it last summer. It’s about 3 miles wide and the cutest, most quaint little island I’ve ever been to. We had had such a relaxing and special day there; biking around the island, laying on the beach, watching people ride horses along the water, drinking summer beers on an ocean deck restaurant as we let one more ferry come and go, not wanting to head home. It was a day that for some reason really meant something to me and I have often thought of it when I’m feeling down. It’s become kind of like a happy place for me when I need to think of something good. (I digress!) So when so many of my co-workers (some that don’t even work at TJX anymore!) came together to surprise me with this, I was floored. It was so over-the-top generous and thoughtful, I truly was touched. So Mike and I picked a weekend, made the reservations and started making plans for our little fall getaway to Peaks Island, Maine.

It was scheduled for this weekend. We were in Somerville this weekend. Boo. We felt like we had to cancel because I’m still recovering from pancreatitis, I’m still on the feeding tube at night and it probably would have been too much to be gone for the whole weekend. I was so disappointed as I was really looking forward to a relaxing weekend, out of the house, out of the city, just with Mike, in a place that really meant something to me. It felt unfair that something else got “taken away” from me. But as Mike reminded me, we have next summer and maybe at that point I’ll be feeling 10x better (hopefully will even be able to have a beer on that deck) so I’ll be able to enjoy it even more than I would have this weekend!
So we turned apples into applesauce (I actually did that today! But I meant the expression! ) and had ourselves a pretty fun filled weekend for a “couple with cancer.” Friday we stayed in but cooked turkey burgers together (yes, I was able to eat a turkey burger— wahoo!). Then Saturday we went to the largest corn maze in the world with two of our best friends and 2 1/2 hours later completed that. Came home and went out to a fabulous Italian restaurant near our house that we haven’t been to in a while and had a great meal together (I’m able to eat pasta now too — even bigger wahoo!). Sunday we walked around the Boston Public Gardens and window-shopped on Newbury St. just for fun. Came home to watch football, nap on the couch with the fireplace going and make another pancreatitis-approved meal— turkey tacos! And then we had one more day- Monday! Mike had taken it off originally for Peaks Island so he kept it so we could have a three-day weekend. We kept the fall-fun going and trucked it up to North Andover to a great little farm that we could  pick our own pumpkins. And that we did. Picked them and then came home and carved them— pretty decently if I do say so myself. 🙂 Overall, it ended up being a fabulous weekend. I hadn’t expected it to be because I was angry about not being able to go away but as life has taught me this year, sometimes you just have to roll with the punches and make the best of what you’ve been given. And this weekend, I was given a great few days.
Hope you all had a lovely fall weekend as well!
XOXO,
Jessy
pumpkin

Pain & Plateaus

Posted in My Stories by

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!

IMG_5815.JPG

Music Miracles

Posted in My Stories by

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

IMG_5818.JPG

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

Posted in My Stories by

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

Can’t Sleep

Posted in My Stories by

I do some of my best writing at 4:30 in the morning…on steriods. And that’s what’s going on right now. It’s exactly 4:37am and my mind is racing and I can’t sleep. So instead of laying here in bed with my eyes open, I thought I’d write down how I’m feeling and what’s new.

It’s been a little while since I’ve written a post, the frequency of the posts have slowed down in the past month and I know it. It’s not because I’m getting bored with my blog or anything of that sort but rather because I’m bored with my life right now. The past 3 weeks have consisted of not eating or making bland, “soft” meals, throwing up, napping, being curled up in pain, going to the doctors, watching tv, sleeping. Repeat. I’ve felt anything but inspirational. I’ve felt bad for myself quite honestly and that’s really it. I felt bad for myself that Mike and I had to cancel a trip to Newport this weekend that we had looked forward to nearly all summer due to my condition. I felt down for myself that I’ve felt so sad lately, it doesn’t feel like me. But as I sit here in bed in the wee morning of hours, I am thinking about everything good that has still happened over the past three weeks.
– I got to see two of my best friends, one from high school and one from college, that live in California and Florida and I very rarely get to see. It’s always rejuvenating to visit with friends, especially those you haven’t seen in quite some time.
– I got to spend time with my family and Mikes family. Both by the pool. Both with our little nuggets. And I’ve said if before but I’ll say it again, there’s no better cure than hanging out with children you love. They put a smile on your face no matter how crummy you may feel.
– I got to slow dance with Mike to Frank Sinatra.
– I got to dance crazily to “Shake It Out” by my girl T Swift with Mike (yes, there’s a lot of dancing in this house). Works for a good belly laugh every time.
– I have been reminded how strong I really am. I have learned how much my body can be put through and how I will bounce back and come out on top, even if it takes a while.
– I got to start back up on the chemo cocktail yesterday. Now this may not be traditional “fun” but being paused is a stressful feeling as you know it’s just pushing back the end goal. So I was thrilled to continue back on the march.
– I’ve learned that the guy sleeping quietly next to me (thank god, it’s a snore a lot of the time!) is the best thing that ever happened to me. That even at my lowest and grumpiest, he loves me unconditionally.

So for a crappy few weeks, there’s still a lot of good that has come out of it. And that’s important to remember, even at my lowest lows. Sometimes, I just have to write it out. I hope you all are having a wonderful and blessed week!

XOXOX,
Jessy

IMG_5767.JPG

IMG_5752.JPG

Twists & Turns

Posted in My Stories by

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)

IMG_5729-0.JPG

Live from Dana Farber

Posted in My Stories by

One shot of morphine down. Two ativans under the tongue. Now I get to sit in an “observatory” room as we wait for it to hit me. Last time, my mind won over the meds and I didn’t feel their effects until after the procedure was done. Hoping for different luck today. I could use a smooth ride. Either way, in about 30 minutes I’ll go in to have my bone marrow biopsy. Fourth one I will have had done and still no easier. Beyond the physical pain, the uneasiness that comes from knowing that what they’re pulling out could have leukemia cells in it is such a crazy thought. I say the words “I have leukemia” often yet there’s nothing physical that I can ever see or feel. But since they’re extracting something from me during a bone marrow biopsy, it makes it feel like they’re ridding some of my body of this terrible diseases. Unfortunately, that’s not what’s going to happen today but I like to tell myself that it is. That with every pull, they’re pulling out bad cells and bad energy from my body.

Maybe the drugs have kicked in, I’m starting to talk a little crazy so I shall end here.

Wish me luck!
Xoxox
Jessy

Ocean Revival

Posted in My Stories by
One of my favorite parts of summer is going to the beach. In particular, I love getting in the water and riding the waves. I hate the cold but once I get in, I’m always happy I did. This year, I didn’t think that piece of summer was going to be a part of my 2014. Can’t swim with a wig on. Would look ridiculous wearing a hat in the water. No chance in hell you’re catching me in a bathing cap. So going bald is really the only feasible option. But in my mind, that really wasn’t much of an option. I had come to this conclusion back while I was in the hospital. I had been chatting with a friend about the benefits of getting sick in the summer and how I’d hopefully be able to enjoy more beach days than a typical summer. But quickly after making that realization, I made the other one that I would have to “be bald” in public if I wanted to fully enjoy the water. And being bald in public is scary. It’s awkward and uncomfortable and something I certainly have not conquered. Even with my head wraps on, I notice that people look at me a little longer so I could only imagine how many eyes would drift my way if my shiny head was out and about on a crowded New England beach. 
 
But on Saturday, as Mike and I enjoyed a beautiful day at Jenness Beach in NH, I didn’t want to let cancer win. Me not dunking and not riding the waves is letting cancer take something away from me that I love. And I just couldn’t let that happen. 
 
So I didn’t. 
 
As I took off my hat and dunked underwater, I was so purely happy. I felt so free. Since my diagnosis, I treat my body like a precious, fragile piece of material (that’s because it kind of is). I’m hesitant of “over-exerting” myself whether it’s walking up a large flight of stairs, doing a new yoga pose or lifting something heavy. This tendency has created a sense of caution in my day-to-day life as I’m always a little nervous about getting hurt or making myself sick. But as I frolicked around in the salt water and let the waves crash on my back, I felt like a normal person. I felt alive. Happy and at peace. I’m so happy I didn’t let not having hair prevent me from having that moment because those type of moments are important…they’re what make life worth living. 
 
Cancer sucks… absa-freaking-lutely!!!! But it doest have to suck all the fun out of my life. And I won’t let it. Because life’s too short not to have fun and dunk in the cold Atlantic ocean!
 
IMG_2160
 
XOXO,
Jessy 

Life is Good

Posted in My Stories by

Yesterday I was a cancer slayer. Today I get to be a spoiled lady with the best boyfriend in the world on a long weekend getaway in Portsmouth, NH.

Seafood chowder is on it’s way, the sun is shining, seagulls are chirping, I can smell the saltwater and feel the ocean breeze. Can’t get much better than this.

Today I feel blessed. Happy. Today I’m appreciating the day and all it has to offer. I’m feeling present in this moment and all my surroundings. Life is a crazy, unexpected, beautiful, wonderful thing.

Enjoy today and all it’s beauty!

XOXOX,
Jessy

IMG_5667-0.JPG