It’s been almost a month since I’ve been back at work. I’m coming in early, leaving late, chugging through long days. Overall, just really feeling the stresses of being a working girl again. And I have to admit, I love it. I don’t like waking up early (obviouslyyyy) but I like waking up with a day full of productivity and socialization in front of me. That was something in the past year I struggled with so much. I often laid in bed for long periods of time after waking up because I simply couldn’t reason with myself of why I needed to get up. So it feels incredible to be making my to-go coffee and heading out the door in the morning. Beyond work, I’ve been back to practicing yoga and going to the gym. Exercising feels awesome because I know it’s something good I’m doing for my body. With so many harsh toxins going into me every week, it feels only fair that I would give this body of mine something to feel good about. Another piece of really exciting news is I got a new car— WOOO HOOO!!!! I’ve only ever owned sh*t boxes (proud owners of them though since I saved my own money in both high school and college to be able to purchase them), but after rear ending some lovely lady that also works at TJX (another story, another time), I said goodbye to Carmen Elantra and got my dream car…a 2012 Hyundai Sante Fe- beep beep! New car, back to work, back to exercising, and back to eating and drinking! My pancreas has really done a 180 and I’ve been off pain meds for over a month and am eating practically a normal diet again! Mike and I even had nachos the other weekend and after over 6 months of not having them, we were in HEAVEN! I’ve also been able to have some drinks lately, which if you’ve read my blog in the past year or know me even slightly, you know that that’s a big deal. It makes me sound like a lush but so be it… I like to have drinks. I like drinking beers and watching the Pats. I like having a glass of red after a long day of work. I like having margaritas with my tacos or going to hotel bars with Michael and getting house snack mix and martinis. I like being Champagnes Moran. And Champagnes Moran I was two weekends ago. Mike and I had an awesome night just the two of us going out to dinner then heading over to a new bar for after dinner drinks…it just felt normal. And that feeling of normal gave me such a sense of pure happiness, from the top of my head to the tips of my toes, I felt amazing. I felt like “Jessy” was finally back in action!
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.
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.
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!)
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!
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!
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!
I’m so hungry. Literally, all I can think about is food. And that’s because I can barely have any.
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!!!!
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)