Tag Archives: leukemia

My Year in Review

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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

Hard Times, Good Times

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I started writing this blog post last week and never finished. I went back and read it this morning and realized in one short week how things have already changed. Here’s what I wrote…

“The past four months have probably been the worst four months of my life. Not the most uplifting way to start a blog post but it’s the truth. During these months, I’ve struggled to stay positive and truly feel happy. Partially because of the unexpectedness of the pancreatitis. It seems so unfair that I would get that on top of leukemia. Because other than that my chemo caused the pancreatitis, it has nothing to do with the cancer. It’s only delayed my treatment, caused me a lot of pain and laid me up in the hospital three too many times. …. even when I’m doing “fun” things, my mind races to that things aren’t normal. That I can’t have a drink. That I can’t have a french fry. That I have to be home early to hook up to a feeding tube. That I’ve simply been hooking up to a feeding tube for over two months now. That I’m not at work. The list goes on and on. 
 
I’m hoping that the end of this funk is coming near as sometime in January I’ll be FINALLY going back to work and I think that will help immensely. But I wanted to write this blog post so I remember how I felt at this moment. These days are long and tiring. Each day I feel different, whether it be emotional or physical. I have a hard time sleeping and my mind always seems to run back to “i have cancer.” I spend half the day sleeping and another portion watching TV. I can’t take that anymore. I want to do, I want to be productive. But sometimes it’s too hard, I’m too tired. Today I was tired. I got out of my pajamas at 4 o’clock to run to the grocery store to get things for Thanksgiving. I love being in pajamas but when that’s all you have everyday, getting dressed up becomes a privilege. Overall, things have just been really tough.”

Well it’s funny what a few days, family, friends and good food can do. I had the best four days I’ve had in a really long time. Thanksgiving was wonderful as I got to see my whole family and grandparents and snuggle with my love bug of a niece. Then Friday I got to see a bunch of my best friends from high school at a fabulous Friendsgiving party! Saturday, Mike and I got our Christmas tree and started decorating for Christmas (my ballerina reindeer are up which makes this girl VERY happy). Then we headed out to a housewarming/birthday party at one of our good friends house which was a blast. Sunday we just stayed around the house and decorated for Christmas, made some turkey chili and watched the Pats. It was a busy but perfect few days and it was just what I needed to help get me out of that funk. I felt so happy to see my friends and family and get to spend four days with Mike. Times like this weekend I’m reminded why I’m so blessed. It helped change my mindset and brought me a sense of happiness that I haven’t felt these past four months. There are still hard days ahead (most likely a lot of them) and I will have to keep working on feeling normal and feeling happy but I’m thankful for last weekend as it brought both those things back into my life.
XOXO,
Jessy
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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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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

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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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

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

Foggy Days

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Foggy. You can’t see clearly. You can’t think clearly. You can’t feel clearly. Just like with fog on an ocean dock, fog inhibits you from seeing what lies ahead of you.  And that’s how I feel. My whole being feels foggy. Unable to see the brightness of days that inevitably lie ahead. Bogged down by sadness and frustration; physical pain and exhaustion.

Last week was hard. Really hard. This week is better but still hard. It all seems like SO much. So overwhelming. So many medications, chemotherapy and brain radiation sure has a way of making you feel out of it, making you feel not you. And that’s exactly how I’ve felt, not myself. In a way, I feel disconnected to my own life. Like I am in somebody else’s crappy body. Somebody else’s negative mind. I’m a happy person. To my core, I’m happy. I love life. I love smiling. I love laughing. I genuinely enjoy being positive. I get excited over little things. And I love that. So when I feel unhappy, when I feel like it’s an effort to smile or to laugh or to get excited, it doesn’t feel like me. And that hurts. That’s a pain that no spinal tap can replicate.

As Mike and I were watching Father of the Bride 2 and Nina was just about to have the baby, she looked up at George Banks and said “Isn’t this just so amazing?” I instantly got emotional. Not because I was so moved by the film but because I felt so jealous of Nina. (she’s a character, I know.) But I felt so jealous that she was lying in a hospital bed, just like I had been all week, and that she got an incredible baby at the end of it. I want a baby, I thought. Because a baby is a miracle, a blessing. A baby truly is amazing. Now, don’t go all “omg she wants a baby?!?!?!” on me because clearly I don’t want a baby right this second but watching this character receive so much joy brought me a sense of sadness because that “amazing” feeling seems so far away. Sounds so dumpy, I know, but it’s how I felt.

But then I sit here, writing that paragraph out and I know in my heart it’s not true. It’s exactly how I felt. 100% truth. Whole-heartedly how I looked at that moment. But as I reread what I write, I know that although it’s sometimes so hard to remember that there’s an end to this race, that there’s a light to the end of this tunnel, I have faith that there will be brighter, happier, fog-free days ahead. In fact, those special, amazing moments, although they may not be as obvious or glamorous as some of life’s big moments, they’re still here. Despite it all, amazing things are still happening to me.

Like when a complete stranger came up to me at the Michael Buble concert on Friday and told me to be strong and that my hair would grow back more beautiful than ever. That she had “been there, done that” and that everything was going to be okay. That’s amazing. She doesn’t know me, she doesn’t know my story or my diagnosis but somehow this woman knew that I needed that little push last week. I needed to be reminded that this too shall pass. I needed a little miracle. And in that moment, my mind felt anything but foggy. It felt clear and precise and happy because I was meant to be there, finding comfort from a complete stranger. That was meant to happen to me. Now that, that’s amazing.

XOXO,

Jessy

p.s. Speaking of amazing, here are some pics from our family vacation on the Cape last week!

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I get knocked down, but I get up again.

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This week I had plans to make delicious meals like grilled buffalo chicken sandwiches, to go out with girls from work for dinner, tackle the mounting pile of laundry in my closet, practice yoga, and enjoy the hot weather that’s finally hit New England. Instead, I’ve been at the Brigham since Sunday night. Instead, I’ve been lying in a hospital bed almost continuously for 4 days. I spiked a fever on Sunday night after getting home from spending time with my dad and Bumpa for Father’s Day. Halfway through our attempt at watching Frozen, we were packed and on our way to the emergency room. After getting blood taken in both arms, a new IV put in, x rays, urine tests and a CT scan done, I was on my way to 4C, Room 56 (could’t even get into my resort 7D). Worst. Sunday night was scary. Really scary. I couldn’t stop the bad thoughts from racing through my head. What was wrong?  Am I not responding to the chemo correctly? Am I having some sort of allergic reaction to all the medicine I’m on? Could it be that the leukemia has come back?? Unfortunately, I still don’t have an “answer” as all the tests that have been run have come back negative. But this is actually a good thing as it means most likely this infection is due to my extremely low counts and my body being unable to fight off anything because of all the chemo.
(this is a pic from the ER on Sunday night. I thought twice about taking it, and thought three times about posting it. But it is what it is. And that’s what a chemo patient looks like in the ER with a fever. #nofun)
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My whole body ached, my head pounded, I couldn’t keep down any food or water and I could barely stay awake for more than an hour— I felt so physically and mentally exhausted these past four days. And then yesterday it all just sunk in and made me angry, made me grumpy. I had Mike hold a pillow so I could hit it as hard as I possibly could for about 5 minutes. I sobbed uncontrollably when the nurse was changing my IV line. Because it hurt? Yes, it hurt, but I cried because at that moment, as Coldplay of course was playing in the background (what’s wrong with me always listening to them when I’m sad), I just couldn’t take it, I just couldn’t take any of this anymore. I hit a wall. I don’t want people poking me and sticking me with things or ripping tape off of my extremely sensitive arms (a side effect of chemo is that your skin can become very sensitive to touch), I don’t want to feel like shit and be sleeping all day. I don’t want to be trapped inside while the sun is finally shining and the air is hot and inviting. I don’t want any of this, I kept thinking. I want my life back, as simple as that. It’s something I’ve said a lot on this blog, and something that has gone through my head probably 1000 times more. I just want my life back. So in between apologies from my nurse who thought she was borderline killing me from the sounds of my sobs, and Mike stroking my arm and saying everything’s going to be okay, I was able to pull myself together and stop the dramatics. Once she left, I beat the pillow. I had to. I had to physically get out how angry I felt. I’m obviously angry about this situation in general, but I felt angry about being here this week. I didn’t plan on this. This isn’t part of my “schedule.” Everything I had planned to do this week is pushed off now or cancelled. And that’s why this time feels so different.  This is another interruption of the already-interuppted life I’m living right now. And I hate the interruption. The other times I’ve come in (other than obviously the first time) I’ve been prepared and ready for it. This time I’m just sitting here feeling ripped off, feeling sick and feeling frustrated. I’m trying hard to stay positive, to continue to try to enjoy everything I possibly can. Like going boating this past weekend to celebrate one of my best friends 25th birthday. Days like that make me feel alive and make me feel so happy and so thankful that I’m able to still enjoy a day like that. Because those days are special and I know it. But it’s hard, it’s hard to always come back to those happy moments when you’re feeling beaten. As much as I try, sometimes thinking of bright days ahead just doesn’t do the trick in the moment. But then again, I got to feel that sun on Saturday. I got to laugh. I got to feel the ocean spritz on my face. I got to dance. I got to enjoy myself for a day. That’s more than some people can say.
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So as always, I feel a little better after this blog post. I needed to get out how kicked down I’m feeling. Because I’m not doing silly dances or arts and crafts this week. This week I’m struggling. This week I’m reminded that I’m in the thick of this horrible disease. I’m only 4 months into this long journey but I’ve still come a long way and I have a lot to be proud of and thankful for. There will be more rough weeks ahead, that’s for sure, but there will also be days like Saturday, on the boat with good friends and good food. That’s what will get me through.
Back to resting and getting rid of this fever.
XOXO,
Jessy