Attitude is everything.
Attitude is Everything.
Tag Archives: life
Milestones
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.
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’!
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.
XOXO,
Jessy
Foggy Days
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!
What a Week Can Do
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.
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.
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
I get knocked down, but I get up again.
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)
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.
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
All the Little Things
While finishing my yoga practice this afternoon, as I always do, I thought about the things I have gratitude for. Things like “the life I’ve been given” or “my family” always pop into my head but today a bunch of little things popped in too. Things that, although small, are so wonderful in this life.
Things like:
birds chirping outside my window while I’m laying in bed
the smell and sense of calmness from a good candle burning
the refreshing feeling you get from drinking a cold glass of water
cuddling
all the yumminess that is a slice of cheese pizza
scratching a winning lottery ticket. even if it’s only $1
the happiness inside me while listening to a favorite song
slow dancing
a good belly laugh
Often when I’m being “thankful” for things in life, I tend to think only of the big things, like family, friends, health, love, but it’s important to also think about the little things in life that make your core smile. Because those things make make life great too, they’re the “warm and fuzzies” that make life special and wonderful. And so those things too, along with all the “big stuff,” I feel so very thankful for.
XOXO,
Jessy
Count On It
I was looking at my Instagram account this morning. Flicking through picture after picture and quickly, I got to “BC” pics, or “Before Cancer.” I’ve looked at old pictures a lot in the past three months, there’s a sense of such warmth and goodness to looking at smiles on my friends and family faces. And smiles on myself, reminding me of a life that I was living and loved so much. However, today when I was looking at these pictures, it felt like a previous time. Like a past life. A time that I’ll never get back. Because the truth is, I really will never get it back. I’ll never be the same girl I was when I rang in 2014. But in all honesty, how could I ever think I would be the same person? It wouldn’t make any sense. As with anything difficult in life, you can’t go through it and stay the same person. Isn’t that the whole point of the journey? I remember ringing in the New Year and thinking about just how amazing 2014 was going to be. I had just moved in with Mike a few months before and things were going swimmingly. I had just gotten my first promotion and would be beginning to work on a new brand, doing new and exciting things. I had an adorable 4 month old niece who I loved more than I knew was possible. I had amazing friends and an amazing family. I was feeling truly at the right place at the right time. I was feeling like this was my time. Things were falling into place and years of hard work were starting to come together. I could see clearly of where I was headed, what I wanted to do. And then January 14th I woke up in the middle of the night with the feeling like a tractor trailer was crushing my tailbone. It would take over a month to figure out what that crushing feeling was exactly but I think of that moment now as so symbolic. Symbolic of how quickly life can change. How quickly things can completely take a different turn. Logically, I know that that wasn’t the exact moment that the leukemia hit my blood stream but in my mind, I think of it like that. I think of it like I went to bed on January 13th a normal, healthy 24 year old and I woke up, on January 14th with my life being crushed and ran over by the leukemia tractor trailer. What’s even more symbolic is the fact that I would be struck by this disease, by this horrible, horrible disease on the very day that person who has saved me through all of this was born. January 14th is Mike’s birthday. Mike has made me laugh when nobody else can. He’s made me smile when I’m grumpy. He’s given me hugs when I don’t want to be touched. He’s kissed my forehead when tears are running down my face. He’s made me genuinely happy…happy in a time when I could never have imagined being happy. He truly is my angel. And so it feels fitting that my modern-day angel would be born on the day that I began to truly need him, to depend on him in all the ways a person can really depend on someone other than their self.
As I’m sitting here at my kitchen table writing this post, I’ve lost all sense of my emotions. (it’s probably not helping that Florence & the Machines are on in the background and it’s raining heavily outside). But I can’t stop crying and I don’t really know why. I’m having such mixed emotions. I feel so physically and mentally exhausted today. But at the same time, I feel sharp. Recounting in my head all that I’ve been through and thinking about all I will continue to go through has brought me to a sense of clarity. Maybe it is still my time after all.
The question “Why me?” has gone through my head a thousand times. I’ve probably thought it 10 times just sitting here writing this post. But it suddenly dawned on me that I should stop questioning “why me” and try to feel grateful for being “chosen” to go through this journey. If I view it as something I was chosen for rather than something that just unfortunately “happened” to me, it gives this whole experience a bigger purpose. So why was I chosen? Why me? Because I can deal with it. Because I am so much stronger and better than this disease. Because I am blessed with family and friends that are so much better and bigger than this disease. Because I will walk away from this disease and be a better person. A stronger person. A more caring person. A more giving person. A person that helps others and makes a difference in the world. “AC” Jessy will be so much better than “BC” Jessy.
Count on it.
XOXO,
AC Jessy
Resort 7D
Yesterday was one of the most nerve-racking days of my life. And then, it was one of the happiest.
Living with the possibility that the leukemia had come back was terrifying and a thought i had trouble really wrapping my head around. I could barely sleep Monday night and literally felt nauseous all morning Tuesday until I met with my doctors. But then I met with them and the many, many prayers from myself, my family and friends were answered. “There are no signs of cancer cells in your bones or blood.” I was overcome with such elation and relief– like a 1,000 pound weight had just been lifted off my shoulders. It was incredible. It is incredible. You know when people say, “I felt like I had won the lottery”? Well, yesterday I won the best lottery you can win. So I am ecstatic and energetic to get this next round of chemo started. It seems funny to celebrate “no cancer cells being found” with more chemotherapy but that’s the way it goes (and will go) so I’m all about this chemo cocktail for the next few days in order to continue to rid my little body of this terrible disease. Officially in BEAST MODE.
(scratch that, I began beast mode last week during my bone marrow biopsy)
When I was checking into the Brigham yesterday, I literally couldn’t wipe the smile off my face. I was practically hopping down the hospital halls, I was in just SUCH a good mood. As we bounced on over to the admitting offices, carrying a suitcase, two bags, my pillow/blanket and of course, Uncle Fred, there was a family in front of us, also carrying such items and for a second, it reminded me of when you’re checking into a hotel for a vacation. It somehow seemed “normal” and exciting. So I decided then that for the next five days, I’m not locked up in a hospital but instead I’m staying at an all-inclusive resort with luxury of on-call staff. How wonderful! After pleading my case, I was able to get back on my old floor, 7D. Thank you Jesus!! Two miracles in one day? Lucky girl! I absolutely fell in love with those nurses, (aka my resort personal assistants), and I’ve missed seeing them so I’m thrilled to be back and chat with them all!
(pic from yesterday waiting for my bed to open up. Both feeling so happy and so relieved)
So around 5pm, after my room was pristinely cleaned and prepped, I checked into Resort 7D, room 76. Overall, super swaggy. The view is magnificent and should make for a great therapeutic writing area.
Plus, the bench in front of the window is roomy enough to be my make-shift yoga mat and allows me to feel the sun and soak up some Vitamin D— what every dream vacation is made of.
The TV is flat screen, SCORE. And it’s ingeniously connected to a remote hooked up to my bed which is how we get sound. Super tech savvy. Extra points!
The shower could have been constructed a bit more logically, rather than directly next to the toilet with no floor lip, causing massive chaos and flooding every time one goes to clean themselves. However, it gains additional points as the water pressure is legit and that’s obviously super important. Lastly, the flooding, although shocking, creates a sense of adventure so I score the bathroom a B.
The bed scores a B as well. The sheets are a bit paper-like but my own personal blanket, Fluffy and Uncle Fred add some softness and overall coziness. The score gets upgraded due to it’s super cool ability to move up and down the back and foot rest. Perfect for elevating my feet after a grueling day on the Brigham island.
The overall design of the room is quite unique and intriguing. Some of my personal favorite pieces are the goal chart white board, varying sizes of examination glove boxes, and by far the best piece…a biohazardous “sharps” depository. Art deco scores high at an A.
The staff here is top-notch, and basically my BFF’s. They are attentive, caring and most importantly, chatty! (or is it just me always chatting to them?? who knows. ) Plus, they rock bright colored, fashionable scrubs like you’ve never seen. They score an A++.
Most importantly, Fluffy and Uncle Fred are sincerely enjoying themselves.
This morning I enjoyed a glorious breakfast in bed: a delish bowl of Honey Nut Cheerios, fruit salad and a coffee. Relaxed in front of my bay window and enjoyed the view. In addition, went for a long walk all around the resort in my gray sweatpants and keds; riding the escalators up and down, using the revolving doors, and aggressively marching around to burn some cals. All-in-all coming close to being one of those power walkers at the mall. It was a proud moment.
Overall, day number one of vacation is going great. My own bed will feel great on Monday for sure, but the Slomerville view’s got nothin’ on Resort 7D’s.
XOXO,
Jessy
Until Next Week
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
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
The Inspiration Initiative 