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

Three Months Hungry

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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.
XOXO,
Jessy

Back at it Again

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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!)

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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!

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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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When Life Hands You Apples, Make Applesauce

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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
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Glorious Life

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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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Bald Princess

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It’s been over 8 months since I lost my hair and since then, I’ve said that I wanted to go out in public without a wig, without a headwrap, without a hat. But I hadn’t done it….I couldn’t get myself to go out in public without covering up. It felt scary and overwhelming; I didn’t want the extra attention or to feel like I’m getting stared at. I’ve taken my hat off a few times in public but never fully left the house without something to cover up!But my hair is actually starting to slowly grow back (wahooo) so today I thought, “today’s my day.” This was something I wanted to do to feel what it’s like to be “different” and to my happiness, I may only have a few weeks left to complete this goal. I’ve always been lucky that I don’t have anything that makes me feel uncomfortable or self conscious in public so I wanted to experience what that feeling feels like. And today I did. I went to Dana Farber wearing nothing and it felt fabulous. I felt free and empowered. I’m bald and a girl and I can’t wait until my hair grows back but until then, I’m going to try to go out in public bald and beautiful! Looks do matter but today taught me that if you feel confident within yourself, it doesn’t matter so much if you get a few extra stares.

Cheers to being different and embracing it!!

XOXOX,
Jessy

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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