Tag Archives: chemo

Tomorrow, Tomorrow, I’m Excited for You Tomorrow

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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.

Tomorrow also marks the restart of my chemo regimen. I’ve been paused for two months because of the pancreatitis but tomorrow I start it up again. It will feel good to restart as I have been worried to be off my planned track for this long…for obvious reasons. Chemo’s no fun but progress is. The start of this next round of chemo means I’m one step closer to getting my life back, one step closer to being cured. And those things are something to be excited about, really excited about.
XOXO,
Jessy

Back at It

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

Painful and Scary. No bueno.

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

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

XOXO,
Jessy
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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

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

Resort 7D

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Yesterday was one of the most nerve-racking days of my life. And then, it was one of the happiest.
 
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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. 
 
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(scratch that, I began beast mode last week during my bone marrow biopsy) 
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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! 
 
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(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.
 
 
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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. 
 
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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. 
 
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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. 
 
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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. 
 
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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. 
 
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XOXO,

Jessy 

The Next Chapter

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Monday afternoon I walked outside for the first time in 25 days and although too cold for my liking, it was the freshest, most crisp air I’ve ever breathed into my little lungs. Getting to sit next to Mike as we drove home through our fabulous city made me the happiest, proudest Bostonian to have ever lived. Stepping into our home was overwhelming but beautiful at the same time. I felt a sense of relief and gratitude that I was able to be in my own home again, as I know not everyone dealt this hand is always as fortunate. Then together Mike and I jumped into the most gloriously comfortable bed I’ve ever laid in and spent a few minutes simply enjoying being together in our home and in our bed. It was a moment I’ll never forget. 
 
And then there was Pizzeria Regina’s. Never have I shoveled food such like a wild animal in my life but I wouldn’t have done it any other way. Buffalo chicken pizza. Pineapple & prosciutto pizza. Mediterranean Greek Salad. 
Nom. Nom. Nom. 
 
With all the excitement of being home, there also came a very daunting feeling. Because as I woke up in my own bed yesterday morning and everything in my home was physically the same, nothing was the same. The last time I woke up in this bed I went to work like every other day not knowing what life was about to hand me. Since that day, my life has flipped upside down. And while I do truly believe everything happens for a reason and this is just a difficult chapter in what is an amazing life…it’s going to be hard. Really, really hard. 
 
But lucky for me, as with every other day so far in my small journey, my family (that includes you Mr. Stevens) was here to pull me up and help me see all that I am lucky to have. And that it’s not just my life that’s changed but all those that I love lives that changed. And that we’re in this hard, long road together. 
 
Today I had my first visit as an outpatient and it went really smoothly– my doctors and nurses, per usual, were amazing and made me feel comfortable and calm. As scary and new as this experience is to me, they constantly remind me that they do this every single day and are the absolute best at what they do– the reassuring feeling this creates is invaluable. While I was in the hospital, I’m not going to lie, I was going absolutely insane over the terrible food… I watched literally hours and hours of the Food Network (I know, I know I’m as masochist), so after a long but successful morning, Mike and I found a spot that was featured on Diners, Drive-ins and Dives hosted by my idol Guy Fieri and treated ourselves to some of the most delicious sandwiches I’ve ever eaten. Wooooo chil’ they were good! 
 
So now I don’t have to go back to the hospital until next Wednesday where I will get a bunch of treatments done including my second bone marrow pull. REALLY not looking forward to that but it will tell us something very important– if my leukemia cells have disappeared! And that, that’s some news I want to find out! Until then, I will keep on keepin’ on and enjoying all the little things in life… like silky sheets, snap chatting with The Voice (yup, did that last night), going for walks, painting my nails, looking at old pictures and of course, eating dynamite food. 
 
Happy Hump Day everyone– hope it’s a fabulous week so far! 
 
Xoxo,
Jessy 
 
P.S. I had cold pineapple and prosciutto pizza for breakfast yesterday morning and I didn’t feel one iota of guilt. Probably doing it again tomorrow. 
Sue me. 

High and Lows

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A day after my absolutely fabulous Friday and two scoops of chemo crappiness later, I’ve had an all-in-all rough 72 hours. Both physically and mentally. I woke up Saturday morning with an extreme amount of jaw, mouth and throat pain which we quickly learned is an infection in my GI tract that comes quite often as a result of chemo. As with any infection, it onset a fever and some nausea. It continued to get worse and by Sunday my fever was up to 102.5. Pretty much sucking the life out of me, even my doctor noticed I wasn’t “as perky” as normal. Luckily I had some friends and family stop by both days which helps to put my attention on something other than the uncomfortableness; even if just for a few minutes. I certainly didn’t expect that I would be Miss Pollyanna, sunshine and rainbows the whole time but this was the first really rough patch I’ve had so far– the kind that punched me in the face with the reality of just how hard and long this road is going to be.

Then we added some insult to injury: Sunday morning my hair started to bid me goodbye. Some people may call this deep denial but I like to say I was being an enteral optimist when thinking just maybe I’d beat the odds and not lose my hair. I was quite honestly clinging onto this glimpse of hope and up until Sunday morning I was yanking on my hair everyday to see it it felt “loose” and lucky for me, it had been sticking in there quite well. Unfortunately, and unknowingly to me, the hair loss comes on extremely quickly and from Sunday morning to when I first noticed hair on my pillow, I was pulling out large chunks by Monday morning (pukeeeee). This quite literally made me feel nauseous. So, since my mom was here for the day, I had one of my favorite nurses and lets face it, didn’t have much of a schedule, I decided to rip the band-aid off as quick as possible and take control of the situation. With a Beyonce playlist of “If I were a boy” and “Diva” blaring in the background, we began the buzz-a-thon: and to my utter shock, it felt great. The first row of hair took my breath a way a bit but I didn’t cry because I felt a sense of control. It felt like I was choosing this, not my sickness making me do it. Which was empowering and important for me to feel.

And, it’s gone! G.I. Jane, anyone?
(refresh the page to see a little slideshow of the whole “buzz-a-thon”)  
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One life lesson learned yesterday: anxiety leading up to a challenge is more than half the battle. The thought of buzzing off my hair ended up being far worse than the actual agony of doing it. And, if you decide to make something shitty, something fun, it’s guaranteed to be a better experience than if you didn’t.
Xoxox,
Jessy

An Unexpected Turn

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A week ago yesterday, on February 21, 2014, my world got turned upside down. Well…as much as I’ll let it. I had been experiencing some weird health issues and finally went to the ER when I found myself in the lactation center at work rolling around on the floor in pain. No fun. I knew something was wrong but not in my wildest dreams did I expect to hear what I did when the ER doctor walked into the room and told me that I most likely had leukemia. After being rushed over to Brigham & Women’s Hospital and a few tests later, I was officially diagnosed with ALL Acute Leukemia. Hence the unexpected turn. 

It’s been over a week since I got the news. It’s been over a week in the hospital and it’s really just the beginning of what will be a very long journey (about two years of chemo is expected). And it’s been a week filled with a lot of emotions; scared, angry, overwhelmed, anxious but above all, a feeling of being truly blessed. Clearly this is not how I thought I would ring in my 25th birthday (yup, rang it in  with my first chemo cocktail!) but this week has also shown me just how lucky I am. I have received the most unbelievable outpouring of love and support, such that I don’t feel deserving. But a kind of love and support that has overwhelmed me and has allowed me to only see this new obstacle in a positive light. How can I not keep smiling when I have an amazing family that loves me unconditionally, a group of friends that have become my family, coworkers that have become incredible friends and cheerleaders, a team of doctors and nurses that are of the best quality in the world, and the most loyal, loving, and supportive boyfriend that a girl could ask for. I truly am a lucky lady. 

I haven’t taken the time to update my little blog in quite some time but with so much more time on my hands, what’s stopping me now? It’ll be a bit of a change of pace than my typical musings about going out, playing with friends and basically galavanting around Boston but it’s my life as of now. And lets face it, I’m Still Young, Still Dumb, and most certainly Still Determined. 

Xoxo,

Jessy 

 

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