Home Sweet Hospital

This Monday, I woke up and went to the Brigham with my mom and Mike. I checked in and got into a johnnie and hopped up into the bed. In a weird way, it felt normal. Being in a hospital bed, although I haven’t been for nearly a year, felt comfortable. Instantly, I was brought back into a world that I should feel very scared of and anxious around but instead, I feel a sense of security. I know to an outsider, and maybe even my family members, that must sound really strange and kind of unhealthy but for me, it’s true. Of course, I was nervous about the procedure and any complications that could’ve arisen but as I sat there in the underground’s of the Brigham by myself waiting for the doctor or nurse to come see me, I was at ease. I wasn’t supposed to be “figuring out my life” or thinking about what I want to do next or applying for jobs, all of which I feel completely lost and unsure of myself doing. Somehow, sitting in a hospital bed, I felt confident, I felt peace knowing I was exactly where I should be at that moment. I was there to put a final close on my leukemia chapter.

I was there to get my port removed.

(For those of you unfamiliar, a port is a permanent IV line that stays in your chest and allows you to give blood and receive medications through. Below is a pic of what it looks like).

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It was a day I have dreamed of for so long, incredibly surreal to believe the day had finally come. This thing, this piece of plastic and tubing that’s been a part of me for the nearly three years. Originally, it felt so foreign and I hated how much it stuck out from my chest. However, I slowly began to have a deep respect for it as I started to realize how it was the gateway to my health. Sometimes when I was at yoga, for example, and the instructor would say to put our hands over our hearts, I’d put one hand over my heart and one over my port. I started thinking of my port as a part of me, and started imagining it as my second heart. One that allowed my original heart to keep beating; it was the catalyst that kept me alive and I am so grateful for it.

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However, this Monday it was time to part ways, and to my moms delight, when I asked the doctor if I could keep it, she graciously said, “no, unfortunately we have to put it in our hazardous waste disposal.” I get it, it sounds strange to try to keep it but I wanted to because of the fact it was such an enormous and important aspect of my journey. I wanted to keep it with my other mementos from my “cancer chapter.” So I was kind of disappointed, strangely enough. But I realize, I guess I don’t need to physically hold onto something because I’ll always hold onto as a part of who I am. I will look at the scar on my chest for the rest of my life and remember exactly what was there, and exactly how blessed I am that all I have left is that minor battle wound. It’s one that I’m immensely proud of.

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So today, after two days of being sleepy and one day being kind of grumpy (I’m sorry Mike 😢 I do love you), I got myself out of the house and met with Dr. Mandy at Dana Farber, not because I had an appointment but because we wanted to catch up and chat as two friends. Dana Farber isn’t home, nor should it ever be, but I’d be lying if I didn’t feel at home there. Who would’ve thought?

Lots of love & light,

Jessy

p.s. final pic is me today… a flat chested lady once again 🙂

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March 25th: A Day I’ll Remember 

The bone marrow biopsies are a thing of the past. It was a stressful morning as things got pushed back and I didn’t end up being taken in until 12:30. So while we waited, we took pics…obviously. 

  
Then I was taken in and I had to take a pic with my most fabulous doctor who has done all my spinal taps and all my bone marrow biopsies since the beginning. Not only is she the most fashionable lady at the Dana but she also is the absolute sweetest. 

  
Now it was time to get suited up- and tis the bunny season, I just had to…

  
So then it was time to chill with the silliness and get this thing some and over with!

   
 
Go time.

(Warning:this is a little graphic but Mike took it and I found it fascinating as I’ve obviously never seen it from this angle!)

  
And just like that, I took my last “big breath”, Susan pulled the marrow and it was over. I instantly started crying but it was tears of such joy, relief and gratitude. I felt so empowered and so strong in that moment. I have hated this procedure every time, I have always gotten so worked up before and after as I wait for the results. But the reality is, it’s out of my control now. I’ll get the results next week and I really feel deep in my heart that the leukemia is out of my body so the moment just hit me so hard, like WOW, I’m really almost done. The finish line isn’t around the corner anymore- it’s right there, I just have a few more steps until I cross that yellow line.

As always, Michael was there by my side. Today, actually holding onto my feet, but right there with me, making sure Halo was being played at the appropriate time and loving me with everything he has. I’ve said it before and I’ll say it again, I really am the luckiest girl in the world. 

   
 
With that, I’m making myself a bowl of ice cream and continuing to relax on the couch with my two loves for the night. Thank you for the millionth time to everyone who said a little prayer for me, I owe you big time.

Lots of love & light,

Jessy 

You Win Some You Lose Some

Today I won a little and I lost a little. 

Good news is that I’m off house arrest. My counts have risen enough that I can go out in public again. 

Bad news is that my counts didn’t come up as much as they needed to begin treatment again so we’re paused until we try again next week. So, I won’t hit the March 16th date. I had so wanted to keep that date and not be pushed back but I also realize that in the grand scheme of things, looking back at the two years, one or two weeks extra really isn’t going to make a difference.

So although today was not what I had hoped for I still had a pretty good day.

It started with feeling a little silly in my mask  but then realizing I’m exactlyyyyy where I shouldn’t feel silly at all. 

  
After getting my blood drawn I headed over to my favorite floor at the Brigham to bring them a boatload of Smile Cards. I have received nearly 200 from various students in NH & MA over the past few weeks which is so amazing. One of my all-time favorite nurses was there and I haven’t seen her in monthsssss so we got to catch up which made me smile.

  
Then I went and had some QT time with my Dr. D’Angelo aka Dan the man with a plan. We looked at my results from a recent CT scan which was really fascinating and things are looking good! 

Then since I wasn’t getting chemo, I had to go over to infused to have my port de-accessed and my three favorite nurses were ALL there at the same time. MY DREAM! Plus one of them it was the first time I’ve seen her from coming back on her maternity so it was fabulous to give her a hug and see pics of her little princess. Then we just got to spend some time the four of us chatting and laughing. These girls are the best and I literally consider becoming a nurse just so I can hang out with them everyday.  

 
Then I packed up and went down to the chapel as I typically do, but today since its Ash Wednesday I was able to get the ash cross put on my forehead which was nice.

I got home and decided it has been a week since I had gotten to be in public so I packed Phoebe up and we drove over to a local walkway along the Mystic River. It was cold but we were bundled and the princess was happy to be out and about. And we saw the beautiful Swans! 

   
 
Then we sat on a little pier and took a momma puppy selfie.  

    
 
We ended our night doing a very important first for a mother daughter duo: WE WENT SHOPPING!!! And oh boy does Phoebs love the shopping. Her harness has gotten too small so we had to get her a new one so she picked it out along with a hair brush and new ducky toy…obviously she needed another toy she said.  #chevronforever

 
When this shopping pair came home, dinner was on the table courtesy of Mike Stevens. ❤️❤️❤️

So what could’ve been a crummy day turned into one that had a lot of smiles and a lot of warmth from lots of different people. Thank you to everyone who has sent me words of encouragement, love, prayers, good vibes, positive energy– or just thought of me. I truly believe it’s all so important and I appreciate every bit from the bottom of my heart.

So next week, we just try again. 

Lots of love & light, 

Jessy 

The Date is Set

March 26, 2016.

This is going to be a big day for me. This is the day I will have my last treatment of chemotherapy. I will walk into Dana-Farber, see the most amazing people in the world, get an infusion of cancer-killing, leukemia sucking drugs and then I will walk out, head held high and I’ll be damned if I ever walk into Yawkey 8 as a patient again.

It will be a day I waited 764 days for.

This Wednesday, I sat in the chair next to Dr. D and when he asked if I had anything else I wanted to talk about, I just blurted out, “when does it end?” “Can I have a date?” “I need a date!.” Honestly, I really didn’t think he was going to be able to pin point it for me, but he pulled up his calendar and did just that. It was so what I needed. I’m so grateful that I’ve made it through over a year of this battle but I’ve been feeling overwhelmed lately with how much longer I have to go. It’s different having pieces of your life back, like work and exercising but knowing that you’re still sick, that you still have a long way to go to make it out of the woods. Knowing the date gives me something to look forward to. To set my mind to. A much-needed finish line in my own little marathon.

Today is National Cancer Survivors Day– I don’t fit into this quite yet because I’m only half way there. i’m in remission, but I’m not cured. I have survived a lot in the past year but I haven’t gotten through it all. Next year at this time, I will feel incredible relief and gratitude if I am lucky enough to go for a walk on a beautiful June day and know that I’m two months passed my last chemo infusion. Two months into the rest of my life. It will feel unbelievable to be a survivor.

So let the countdown begin. 292 days to go.

XOXO,

Jessy

Time to Fix this Pancreas

Sitting here waiting to be brought in to the surgery room. No drugs in me yet so I’m still pretty anxious. They just got brought Mike back so he’s here with me now which is making me feel better.

I’m just so ready for this pancreatitis business to be behind me. It’s been a long 6 months dealing with it and it’s time to put it in the books. Hoping that I wake up and find out that the stent is out and there was no need to put another one in.

I’ll take those prayers today, they’re much appreciated.

Time to be a warrior princess….
XOXO,
Jessy

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My Year in Review

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

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

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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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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