Tag Archives: hospital

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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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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Milestones

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Today is milestone day. Today marks the end of my brain radiation. It was only an 8 day preventative treatment regimen but it’s another thing to check off “the list” which feels incredible.

All-in-all radiation was strange. The process is pretty simple— you go in, get on the table, strap in, get zapped for a few minutes and then it’s done. It doesn’t hurt and it’s quick, so in that regard, it’s pretty great compared to chemo. However, it’s sneaky because it makes you really exhausted which is never any fun. The worst part, BY FAR, was getting fitted for my mask a few weeks ago. Basically, in order to make sure that my head doesn’t move an inch during the treatment (don’t want to zap the wrong areas), you have to have a mask created specifically for your face that you wear each time. It fits tightly around your face and then locks in place so you can’t move. Definitely would not be ideal for the claustrophobic! But with the help of my girl Beyonce, we blared music throughout the room and it made the few minutes go by quick and painless. Nothing a little Yonce can’t make better.

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So with one of my best friend by my side, I walked out of the Brigham today with my mask in hand and am happy to say that getting my brain radiated is a thing of the PAST. WOOOOOOOOO CHIL’!

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And then we have tomorrow. It will be another long, hard day but at the end of it I get another milestone under my belt. Completion of the CNS (central nervous system) phase.  I will receive more chemotherapy and then one final spinal tap (this is the fourth in a two week period).  But as long as everything goes as planned, this will be my last spinal tap for 18 weeks!!! That’s about as long as I’ve been going through treatment so that my friends, is a very welcome and pleasant change of pace for this young lady!

Milestones are important. They symbolize progression and moving forward. And that’s what I need right now, to keep on keepin’ on. Onward and upward: it’s what it’s all about.

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XOXO,

Jessy

What a Week Can Do

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One week ago today, I was running on about an hour of sleep, crushing a 101+ fever, puking up anything I tried to consume, sitting in a hospital bed, and thoroughly pissed off. 

Today, I’m getting things down around the house, sipping on green tea, watching birds enjoy my bird bath (so chute), enjoying being in my house, listening to Sam Smith and feeling thankful for having just had such a wonderful weekend. What a difference a week can make. 

I got out of the hospital on Friday and it weirdly took me the whole night to mentally “feel better.” I couldn’t really kick the anxiety I felt from being locked up in the hospital for five days. For some reason, this stay really kicked my ass and even Regina’s pizza couldn’t get me out of my funk. But Saturday was a new day, a better day and the start of the weekend hit the “reset” button. Mike and I walked around Harvard’s “Arnold Arboretum” on Saturday which was perfect. In the city, but I felt so far away from the hustle and bustle of Boston. There were gorgeous flowers, endless walking trails, and my best friend holding my hand– couldn’t ask for much more. I even removed my baseball cap for a bit (which felt amazing) and we walked around as the beautiful bald-headed couple we are right now. 

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After walking around for two hours, we headed to my old stomping grounds in Brookline to enjoy an early dinner on the outside patio at Barcelona, the same restaurant we went on our first date in Connecticut. Meat & cheese, soft shell crab, grilled cheeses with “jamon,” salad, and mussels… we rolled out of there.  

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Sunday, Mike went golfing went with his brother and a few friends as I contently cleaned up around the house and did some errands (one week of getting nothing done makes cleaning such a fun thing!). I then headed to Mansfield to spend the afternoon with Mike’s sister-in-law and nieces. Elle, who’s almost three, loves princesses, reenacting Disney movie scenes and is the sassiest little thing around. I’m obsessed. There’s nothing quite like playing in a “castle” tent, pretending everyone else are monsters and chatting about earrings, pink dresses and dolls. So lucky am I to have that little nugget in my life. Doesn’t matter if you’re having a bad day to a 3 year old, she’ll make it better. 

I hope you too had a wonderful weekend and got to do things that made you smile. Happy Monday! 

XOXO,

Jessy 

Until Next Week

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LK;ADKFJAD;LAJD;LKJA;LKJDF;LKJ AHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!  

 
That, my friends, is how I’m feeling right about now. Today went NOTHING like how I thought it was going to be. I had planned to write a post tonight from my hospital room, instead here I am sitting at my kitchen table again. I’m home with a packed suitcase and another hospital stay pushed off. Good news, I didn’t get the bone marrow biopsy. Oh wait, that’s just because I’m getting it next week instead. Today I got a better understanding of what my doctor didn’t “like” last week. Basically, when my blood’s been drawn the past two weeks, things called “blasts” have appeared which indicate that the leukemia could somehow have come back (could, keyword there). Luckily, although still there, that number has decreased since last week and all my other counts were in the normal range. So both my doctors are leaning towards that these “blasts” are just immature cells that my bone marrow has produced while it’s been replenishing itself. However, the possibility of the leukemia coming back is real and therefore, until we know exactly what’s going on, we can’t move forward with my planned treatment. 
 
As my doctors were explaining everything, I started getting emotional… I was instantly overwhelmed, I felt like a ton of bricks had just fallen on my shoulders. Consoling me, Dr. Mandy talked to me about how healthy it is to get “out” my feelings and said something that really hit home. She said, “You’re dealing with death, 50 years earlier than you should. You have the right to feel the way you’re feeling.” I hadn’t thought of it like that until this moment. I had been coping by categorizing this in my head as a “sickness,” a sickness that is awful and unfair but something I would get through and undoubtedly live to tell my kids about. I’ve done a good job telling myself that the ‘d’ word is not an option. And I really still don’t see it as one. (I have way too much to do in my life to let it be an option.) But the fact that it’s ever even mentioned or considered is terrifying. The reality is, this most likely is all just a big scare; the hope is that I’ll go in next week, get this bone marrow biopsy done and find out a few days later that everything is fine and continue on with the action course we’ve had planned all along. But the possibility, as small as it may be, that the results could come back next week and things could get “more serious” than they already are leaves me a little speechless. I am, however, reassured that if the results don’t come back the way we want them to, there are still different treatment options we can try, all of which are of the goal to cure.
 
Other than those first few days, emotionally this was definitely one of the hardest/scariest days. But, just as they were there to comfort me in those first few hours and days, my doctors were there to comfort me and be honest with me…to let me know exactly what’s going on and in terms a marketing major can understand. They make such an incredible team and are so unbelievably knowledgable about this disease. I trust their decisions, whole heartedly and completely. That’s a priceless feeling. Beyond all their brilliance, however, they are caring, kind, compassionate people, and those qualities have continued to make all the difference for me. When I look in their eyes I can see how much they want this too, how much they truly care about me, almost as if I’m a loved one of theirs. I’m not though, I’ve only known them for 3 months. But they care about me a lot and they take care of me to a level that I can’t describe. I am and will forever be grateful to Dr. D and Dr. Mandy– best doctors a person could ask for.  
 
So my update today wasn’t the brightest of ones. Today was a tough day. This week will be a tough week… my mind is inevitably going to wander and I’m going to have to try really REALLY hard to stay focused and positive. I never thought I’d say the words “I’m excited to get a bone marrow biopsy” but I’m excited to get a bone marrow biopsy. I want next week to come because I want to know what we have to face. Once we know what we’re facing, we can map out our plan of attack and get back to kicking some cancer ass.
 
But before I get back to kicking some ass, I’ll take a few extra prayers this week if you’ve got ’em. 🙂 
 
XOXO,
Jessy 
 
p.s.  a shoutout to my shitty friend leukemia— go eff yourself. 
p.s.s. another special shoutout to my lovely grandparents and great aunts and uncles– apologies for my cursing. 

Good Days Making the Bad Days Harder

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It’s the night before another hospital appointment and most likely a five day stay to begin the next round of chemo. As I had mentioned in my last post, I’ve had a great few days. A great week, in fact. My energy, and spirit, has been high and I’ve genuinely just felt happy. I’ve done a good job at putting tomorrow “off” in my mind and just enjoying the time away from the hospital and off the chemo. But as tomorrow nears closer, I know I can’t put it off any longer and I’ll be in that hospital room before I know it. I’m anxious for multiple reasons…I have another bone marrow biopsy tomorrow, one that was not planned. So I’m nervous about the physicality of the procedure as I know how uncomfortable it is. I’m also anxious about the results of the biopsy as my doctor is doing it to double check that nothing has come back due to a something he saw in my labs last week. He’s “almost confident” it’s nothing but obviously wants to be sure. And “almost confident” makes me nervous. Really nervous. I’m anxious about how I’ll respond to the next round of chemo as with each new type of treatment I get there’s always the possibility that there could be complications. I’m anxious about simply being in the hospital for five days— the bed’s not comfortable, I can’t stand the food and the little beeps and noises all night drive me crazy. So basically, I’m just anxious for it to be one week from tonight. 

 
Last week when I thought I was going in for the five days I wasn’t nearly as bummed out as I feel right now. Since I hadn’t felt “good” in over a month, it made me have a little bit of a “who cares” attitude. But tonight I feel much different than that, I’m bumming hard over having to go back tomorrow. I feel this way because I know that starting back up with the chemo means that my body will be knocked down again. While I logically know that this is what my body needs and that it just means one step closer to being cancer free, emotionally it’s been so freeing and exhilarating to feel like myself this past week. And I just really, really don’t want that feeling to be taken away from me. I don’t want to feel sick, or nauseous, or tired, or have another month-long headache. I think since I felt a sense of normalcy the past week, it makes it that much harder to say “bye” to it tomorrow. Correction: it’s not goodbye but just “see ya later” for a little bit. One day all these crappy days are going to add up to one healthy, happy life. And that makes it all worth it. 
 
For now, I’m enjoying a bowl of ice cream (addicted), watching The Voice and enjoying my last night at home for a few nights. Thinking some good thoughts for some good outcomes tomorrow. 
 
XOXO,
Jessy 

Happy Days

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On Wednesday morning, I packed my suitcase, grabbed Uncle Fred and my favorite blanket and headed to the hospital thinking I would be there for five days. Two hours later, Dr. D came in the room and said we’d have to wait a week until I could start my fourth round of chemo. I was certainly not looking forward to being in the hospital for five days but I was ready for it. I had mentally prepared myself and there’s always a sense of “excitement” to start the next phase because it just means I’m one step closer to the end goal. So in a weird way, I was disappointed that I didn’t get admitted last week— not to mention, my bags were packed and I knew I’d have to unpack just to repack— the worst. 

But what originally felt like a setback quickly turned into something I felt grateful for. Not only has the weather been absolutely gorgeous but physically I’ve felt better than I have for quite some time and therefore was really able to enjoy just being home and having some time to myself. I had plenty of energy which allowed me to work on a mothers day gift for my mom all day Thursday (before & after pic below… loved the way it turned out)! Friday night Mike and I went out and got pizza from our favorite place and caught up on some TV. It was a perfectly lazy night.
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Saturday, Mike and I had fun day, plain and simple. The day felt normal and that’s exactly what we needed. My Grammy bought me a membership to the Museum of Fine Arts: Boston for my birthday and we hadn’t been able to use it. Feeling good, I got all dressed up and we headed downtown. We so enjoyed the museum, so many beautiful and interesting pieces of work. I especially loved an exhibit called “Think Pink” which examined the history of the color pink particularly in fashion. We saw Lucien Lelong sketches, Oscar De La Renta dresses and Louboutin shoes… I was in heaven.
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Then we headed to Boylston, walked around for a bit to see all the beauty that’s Boston in Springtime and enjoyed an early dinner outside together. Came back to our home and watched the Bruin’s demolish the Canadiens on our comfy couch. Glorious day.
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Today was special as well. I felt really lucky to be able to spend Mothers Day, not in the hospital as we had planned on, but at home in Manchester with my family. My Nanny was there. My sister was there. And of course my mom. If we had only had my Grammy there, I would’ve been with the four most important women in my life. I’ve been so blessed to have so many strong women surround me and show me what it means to be a wonderful mother. And since it is mothers day, I’ll tell you a little about my mom. She’s the best. She’s the happiest, most loving, funny, beautiful woman I know and above all else, she is my best friend. I’m such an unbelievably lucky lady to call her my mumma.
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Sunday nights can get me a little bummed but tonight I feel happy and lucky that I’m in my own bed, watching the Revenge season finale knowing I was able to have such a fabulous weekend with a lot of people I love. If I would’ve been admitted on Wednesday, I wouldn’t have gotten to enjoy these past few days like I have. Everything really does happen for a reason.
XOXO,
Jessy

A Different St. Paddys Day Weekend

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St. Patricks Day weekend is one of the many many reasons why I love living in the beautiful city of Boston. This weekend here is like no other– so full of excitement, energy and plain fun!Honestly, I was very disappointed about having to miss all the shenanigans that go along with this wild weekend but it is what it is. Luckily for this little Irish girl, I was able to have a nice day with lots of visitors! After three weeks of not being able to snuggle my favorite princess, my doctors said that I could have Eleni come in to see me. It’s amazing what a child can do for a soul…it literally made my heart feel better to give her hugs and kisses. Then some fabulous girlfriends came to chat, shower me with St. Paddys Day bling and give me some much needed girl time gossip! My parents and brother came later in the afternoon and unfortunately I wasn’t feeling well by the end of the day, but it was nice to have them here to be there with me during a not-so-great time.

Busy day for this lady but an even bigger day tomorrow. If my neutrophil count goes up to 500 (basically a number they give to my immune system), I could be going home. I’m trying not to get my hopes up but that’s basically impossible. I want to breathe fresh air, see the sun, lay in my bed, eat a home cooked meal. I want that so bad. So tonight, I’m saying an extra Irish blessing in my prayers and hoping I get my wish to go home tomorrow.

Hope everyone had a special weekend. Enjoy the week ahead!

XOXO,
Jessy

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