Back at It

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It’s been a rough go at it lately. Really, it has. Although my attempts to limit foods have been the best to my ability, I somehow found myself in an ambulance by myself to the hospital on Friday afternoon due to my pancreatitis coming back.

Painful and Scary. No bueno.

So I’m back in the Brigham, not getting to eat or drink, on rotating pain meds, and just overall itching to get out of here. Luckily, I’m not getting pumped with nearly as much fluids this time so I haven’t gained the 40+ pounds I did round 1. I do, however, have some pretty amazing news. My doctors have finally approved Mike and I being able to get a dog so there’s something for us to be very excited about and something to very much look forward to! So while Mike’s at work, I’m over here lookin for someone to call our little baby! If you have any frenchie breeder or rescue suggestions, I’m your girl!!!

Quick post today but just wanted to give an update about what’s going on here on my end! Hope you all had a marvelous weekend!

XOXO,
Jessy
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Can’t Sleep

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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

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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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Twists & Turns

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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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Live from Dana Farber

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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

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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!
 
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XOXO,
Jessy 

Life is Good

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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

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Help Me Raise Funds to Put an End to Cancer

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On September 21, I will be participating in the 2014 Boston Marathon® Jimmy Fund Walk. From the very moment I was diagnosed with leukemia, my life has been in the hands of the wonderful men and women at the Dana-Farber Cancer Institute (DFCI). Those hands and the brilliant minds behind the endless hours of research that is conducted at the DFCI has literally saved my life. And for that, I am forever grateful and forever indebted to the people and research that is executed at this incredible establishment. By walking and raising funds, I want to give back to the organization that has gone so far beyond simply “treating” my disease. It has offered programs like massage therapy and acupuncture to ease my stress and anxiety. It has given me nurses that comfort me when I’m scared, chat with me like I’m one of their girlfriends and get me cold facecloths and warm blankets when I’m getting sick. It has provided me with social workers and therapists to help me digest this terrible time in my life and help make it one that I can get through with strength and courage. And above all else, it has given me the best doctors I could ever ask for. Doctors that are not only brilliant but compassionate and warm. Doctors that have become my friends and whom I trust with all my being. 

The funds raised through the Walk will not only help the DCFI continue to provide this type of beyond brilliant care to each and every one of their patients and families, but it will help to enhance these programs and initiatives for the future. These funds will also be applied when promising new research opportunities arise which is essential to ending the fight against cancer. By making a donation, big or small, you are helping to change the odds of patients facing cancer. And lets face it, that’s a pretty big deal. 

Below I have included a link to my fundraising page where you can donate in order to help me reach my goal of $1,000. 

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

Every little bit helps so please consider donating to this more than worthy cause. From the bottom of my heart, I thank you for supporting me and Dana-Farber and the Jimmy Fund.

XOXO,
Jessy 

Storms Don’t Last Forever

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Storms don’t last forever. It’s a mantra I’ve found myself needing to think a lot lately. 
 
It’s been over 5 months since I was diagnosed but it feels like a century. When the 20th of the month hit, it felt hard to believe that I’m not even to the halfway point. Scratch that, in the grand scheme of things, I’m not even to the quarter mark. Spring 2016 feels like an eternity away. And in the middle of Summer 2014, the thought of that date gets me down. Taking it day by day is most definitely the best way to complete this challenge. But I’m not a day-by-day type of person. I love looking to the future. I’ve always been like that… looking forward to what’s next, striving for a bigger and better goal. But in this case, when the goal is so far away and there’s a lot of “mehhh” in the middle, looking to the future feels more like a daunting task rather than an exciting endeavor. 
 
I wrote this yesterday in the middle of the afternoon, sitting on my couch, basically just feeling sorry for myself. 
“I just want my life back. I want it back so so so bad. I want to go to work. I don’t want everyone to have to take care of me and do favors for me. I want to have a drink. Go for a run. Do laps in the pool at my sports club. Eat raw sushi. I want to go on the vacation Mike and I had planned to the Dominican. I want to not feel worried all the time or have so much anxiety. I want to get a paycheck. I want my boyfriend to not have to give me shots in my stomach every night. I want to get a manicure and pedicure. I want to not think about cancer every second of every day.” 
 
Those negative emotions are all I could think yesterday. All I could feel is how much I want my life back. However, reading it back, I feel guilty. I beat myself up when I have pitty parties for myself because it makes me feel so ungrateful and unappreciative of what I’ve been given. I’ve been given the gift of being able to fight and overcome this terrible disease. Not everyone is as lucky— that’s a thought that goes through my mind multiple times a day. I am lucky and I know it. But the truth is, I sit here today and I still ache for my old life. I still want more than anything to wake up from this bad dream and be a healthy, normal 25 year old. I try so hard to be strong but sometimes it’s just too overwhelming, too draining, too frustrating. But today’s different than yesterday. How much different? Not much. But I’m one day closer and two shades happier. Tomorrow I’ll be at the hospital all day and will be getting another bone marrow biopsy done to triple check that there are no leukemia cells in my body. So tomorrow’s a big day. It won’t be a fun day, so today had to be. Today I cooked and went to the super market and received a pair of fabulously comfy slippers from a coworker and am about to go to an outdoor yoga class which will be the first time I’ve done group exercise in over 5 months. It’s a better day than yesterday and Thursday will be a better day than tomorrow. 
 
Storms are scary. There are large cracks of thunder, lightening that illuminates the sky and sets fire to things here on earth, heavy rains that come in sideways and make you cold and wet. Often times in a storm, you even lose power. Sometimes, the lights just flicker and other times you can lose it for hours and even days. But the light always comes back on. The thunder and lightening and rain, they always stop. The clouds always break and that big beautiful sun always comes shining through. 
 
XOXO,
Jessy