Time Goes On

3 years ago on this morning, I was in a hospital bed being woken by doctors and nurses. I was about to start one of the most physically painful and emotionally draining days of my life. I had just been diagnosed and rushed to the hospital the night before and today was the day I had to undergo multiple tests and procedures to determine just what kind of leukemia I had. January 21, 2014 was a day of absolute unknown and terror of what lie ahead. 
3 years later I’m waking up in my own bed with no beeping machines or nurses poking me for blood. Instead I can hear my wind chime outside, birds chirping and Phoebe is snuggled up next to me demanding for scratchies. I’m wearing an engagement ring and get to marry the love of my life in 5 months. I’m going out to dinner with my best friend of 25 years tonight for her birthday. My life is in such a different place than it was on this day in 2014, it’s almost mind boggling. 


3 years from today is still unknown. However, this time, fear has been replaced with excitement. Where will Mike & I be living? What will I be doing for work? Will I be a mom? There’s so much more living to do. There’s so much more I’m looking forward to and I feel beyond blessed that I get to feel these feelings of excitement and joy. 
The beauty, and tragedy, in life is the same. You never know what life has in store for you. You never know if the hopes and dreams you have for yourself will be realized. But you do know that you have today, and this moment and this breath. So make the most of it. Enjoy it, savor it and soak up the sunshine that is your life. 
Sending each and everyone of you – those who have my followed my blog from the beginning and those who have just found it- so much love and gratitude. I am thankful everyday for the prayers and positive energy that you have sent my way to get me to this day. 
Love & light,

Jessy 

Two Years of Bubble Girl

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Two years ago this picture was taken. This was the first time that I had been able to see Leni since I was diagnosed. Truthfully, it was one of the happiest moments of my life.

A few days later and this picture was taken….

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was still severely neutropenic at that point which is why I had to wear a mask and gloves when she was around. This picture is such mix of emotions: I feel such love and warmth when I look at the two of us locking eyes. She is truly my little angel and I’m so grateful to have her as my Goddaughter. But it brings an emotion of sadness because I sit in bed two years later and feel like, although so much has changed, not much has changed at all. 

Since that picture… I cut my hair….

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Then I lost it all.

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But then slowly things started to turn around and I started getting fuzzies. Photo on 6-11-14 at 4.22 PM

it was time to fix my pancreas — with a full head of hair! PRAISE JESUS! IMG_5248

And then on January 12, 2015 I marched right back into the work force. I came back to the same desk I had left abruptly on February 20th 2014. IMG_5164

I even bought myself a new car to deal with all the winter snow– santa fe BEEP BEEP!IMG_5262

Then I started balding again which was no fun but I kept my “crow” cool and namasted on.IMG_4013

Then I went back to my old almamater and made a speech for the American Cancer Society’s Relay for Life. It was a moment that I’ll never forget.

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things were starting to feel like normal again. IMG_6602

I was even able to put my hair in a pony tail!!!!!!!!IMG_7118

I was getting stronger and doing things with friends. IMG_7912

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AND THEN THIS HAPPENED. IMG_9199

PUP. MOM. = Life changed forever. In the best way possible. IMG_9376

I’ve been feeling so much happiness. Like I’m finally in the right place at the right time. IMG_0377

But then three weeks ago happened and I was made into Bubble Girl again– not able to see anyone who hasn’t cleared themselves as very healthy and certainly no going into work or public places. Then I had a week that I got taken off the house arrest and I sighed a sense of relief knowing that my counts were going back up, they weren’t yet where they need to be for treatment, but they were in the right direction. THEN I go into clinic last Wednesday. Uh oh. My counts have dropped to lower than they were even before when I was put on house arrest. So not only am I told, no going into work or public until you’re back here next Wednesday but we’re most likely going to want to do a bone marrow biopsy to “make sure things are okay.” For the first time in a very long time, Dr. D had a very serious demeanor, he mentioned that he “just could not explain” why my counts would be doing something like this. We go over a few complicated possibilities but all my mind was registering is this is no good– this is not what I want to hear– this is exactly the  opposite of what i want to hear. Just moments before, i had been thoroughly concerned about my end date being pushed back another week, now i’m a terrified that something has come back. That the leukemia may be showing signs of recurring. As I say these things to Mike and other close family and friends, I am often shooshed and told “we can’t talk like that” but the reality is, that’s a possibility, as small as it may be, that could happen. I am trying so hard to stay positive. I have been burning essential oils day and night, trying to breathe in only good toxins, deep breathing, taking ativans when I get too worked up, looking up at the sky a lot more to remind myself how big this place is and how small I am, I feel like I’ve tried everything but the fact of the matter is is that this shit is absolutely horrifying. I cannot begin to go down the path that my mind takes when I think about the doctors telling me something I don’t want to hear, so I won’t go there… but I know, it’s a place I really really don’t want to be. I’m just so close.

Two years ago when that picture with my niece was taken, I told little Leni that in two years, Auntie was going to be all better– that’d I’d be able to play with her all the time, with no masks and no gloves. I want to make good on that promise.

If you have a free moment tonight or tomorrow, I would so appreciate if you kept me in your thoughts and prayers. If you just sent me good energy to harness to endure whatever is to come. May it be the expected path I’ve been on, or one that takes a turn. I am a warrior princess and I’ll be ready… just need some of my angels behind me to cheer me on. I know I ask of you all a lot so I hope it’s not “too much”– I just so believe in your positive energy and thoughts being the ones to heal me.

All my love and light,

Jessy

 

p.s. here is Leni last week breakin hearts for Valentine’s Day. Does it get any cuter?

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A Slap In the Face with Reality

Yesterday, like every Wednesday, I went in for my weekly dose of chemo.

Yesterday, unlike every other Wednesday, I was sent home without getting any chemo.

As always, they drew my blood to see what my levels were at, and unlike always, they discovered that I was neutropenic. What neutropenic means is that my white blood cells (specifically, the ones that fight off disease & infection called neutrophyls) are extremely low. To put it into perspective, a “healthy” person is above 1,000 and mine yesterday were at 150. I’ve been at this type of level before but not in a long time and only during times that I was being hospitalized. Being “neutropenic” means that I’m at an extremely high risk of infection, whether it be the common cold or flu or something more serious. Either way, if I were to catch something and get a fever of 100.5 or more, my ass would be back at the Brigham. And as fabulous as everyone is on 7D at the Brigham, that’s not where I’m looking to do overnights anymore. So, I was put onto house arrest. No going out in public unless it’s absolutely necessary until my counts are back into an okay range. Unless I go get them re-checked this weekend, that means I’m slumming around our Slummerville palace until I’m back at the Dana next Wednesday. I know that some people may read that and think, “so lucky, you get to work from home– you have an excuse to not be able to leave the house”– but that’s exactly what I don’t want. Yes, I would love to stay home for a normal reason and snuggle with Phoebe all day but that’s not what this is. The last thing I wanted to do was have to email my relatively new boss and tell her I can’t come into the office because “it’s too risky” for me. Do you know how embarassing that is? How awkward it will be when I go back to the office and people ask how I’m feeling or if I were sick? I have the options to either lie to them and act like I had the cold, awkwardly say something like “health issues” (which I used in an email today, SHOOT ME) or explain why I really was working from home which is honestly mortifying and awkward for everyone involved.

What’s more, is that my issue of not going into work is honestly the least of my worries right now. My bigger worry is that this pushes back my end date. I hadn’t announced it here on the blog because I didn’t want to jinx myself, so guess that didn’t matter. I am scheduled to end treatment on March 16, 2016. That’s 42 days from now. 42 days!!!!!!!!!! If I go in next week and my counts haven’t climbed back to 1,000 then I don’t start my new round of chemo (I’m on three week cycles, so next week is “week 1” which means an additional form of chemo and the start back up of steroids and my 2 week chemo pill). And if I don’t start my next round next week, then March 16th gets pushed back. And I just can’t have that happen. I need March 16th. I want it so badly. I want to finish this chapter so incredibly much, it’s hard to explain.

Yesterday, my nurse Andrea told me not to worry. Dr. Mandy gave me a call at night and reminded me that these things happen and just to rest and enjoy being home. But I can’t not worry. I’ve been in such a good place lately, chugging along, week by week, that a bump in the road now feels like a big stumble. Since the beginning, my dad has compared this journey so eloquently so the Boston Marathon– we’ve talked many times about the various points I was “at” during the race– it will be about 26 months from when my symptoms started to when my treatment ends so it’s fitting the the marathon is 26(.2) miles. But Heartbreak Hill is mile 19 through 21– and I’ve passed mile 21. I’m rounding in on the Citgo sign now. The end is in sight– my feet are numb and my knees feel like they’re about to buckle but I can do this. As I’ve said so many times to myself over the past 24 months…I am strong, I am loved and I can get through this.

Like so many times before, when I started writing this blog, I felt bitter and pissed off but as I finish, I’m reminding myself that whether the finish line comes on March 16 or another day, I’m going to finish the race.

Lots of love & light,

Jessy

 

Onto 2016

2015 was far better than 2014. For many reasons, but most importantly this year brought me much improved health than the year prior. That improved health allowed for other blessings throughout the year and I’m grateful for the improvements so I wanted to write down some things down that were absolutely awesome about this year. 

1. Spent about 95 days less overnight at the Brigham 

2. Had hair. ALL year. Plus a pony tail at the end.

3. Had way less spinal taps and bone marrow biopsies 

4. Puked a hell of a lot less 

5. Did a thing I like to call “be a working woman”

6. Switched jobs and ditched the long commute 

7. Ran a 5k 

8. Went on vacations with people I love

9. Learned how amazing stand-up paddle boarding is

10. Became a God mother to the sassiest, most beautiful, most hilarious little girl

11. Made a speech about my journey to about 1,000 students at my alma mater 

12. Stood beside an amazing friend as she got married 

13. Saw my girl T-Swift with all three of my besties and a bunch of other ladies I love!

14. Bettered my yoga practice & began learning about different philosophies & teachings 

15. Last but certainly not least, became a pup mother

  

I have mixed emotions going into this night, however. I got the pic below in my TimeHop and I got thrown into a surreal feeling of looking at my happy ass before my life got flipped upside down. Mike and I had such a fun night 2 years ago. We went to an incredible dinner in the North End, drank red wine & champagne then hopped over to the best little hookah bar where we sat and sipped martinis until about 11:50. Paid our check and ran over to the water to watch the fireworks go off in the absolute FREEZING cold! It was a glorious night and I remember it so vividly and relish in those memories when I think about my “life before.” 

  
Thinking of that “before” makes me a little sad honestly cuz I’d love to live that night over again. But that’s not how life mworks, you don’t get to go back in time. You only have today and that’s what today’s still pretty good too. It’s different than two years ago… I’m already in my pajamas, we have a pup snuggled up with us and there’s a lasagna about to go in the oven that was made by my amazing nurse Andrea who makes her own pasta, sauce and ricotta!!!   

  
PLUSSS, we just got this picture of these beauties which really just couldn’t have made my heart any warmer. #ILoveBeingAnAuntie 

  

So net net is tonight’s still pretty nice too. 

I have waited 22 months and 11 days for the clock to strike midnight and my phone to say 2016. I can’t really believe it’s here, I can’t believe we’re about to hit the year that I’ll get to begin to close my cancer chapter. But I’m excited so let the countdown officially begin.

Thank you to all my amazing family, friends, nurses, doctors, coworkers, blog readers, and incredible boyfriend for your continued support and endless love. I am grateful tonight and grateful always. 

All the love & light in the world going into 2016.
Jessy 

One Day at a Time

I was walking to Starbucks this afternoon in this blistering cold weather that has fast come upon on us. Bundled up but enjoying a few minutes outside with the sun shining on my face. All of a sudden, I felt overwhelmingly nauseous. As I’ve learned quite well, it helps to just slow down my breathing and take a moment to calm down. Many times, that can subside the feeling and I can move on. Today however, while I was going through this somewhat common routine, I got a shot of annoyance run through my body. I’m sick of being sick, I thought. I’ve come so far from where I’ve been so when I really think about it, I am so blessed. But sometimes in the heat of the moment, I just want to feel fully healthy. My treatment dosage has been getting continuously upped the past few months as we work to get my counts to the lowest possible that I can handle. The point being is that the more chemo my body can handle, the more they want to give to increase my chances. TOTALLY get it. But TOTALLY sucks at the same time. Everytime I’m feeling relatively good, it means that my “counts” are normalizing which means we can increase the amount given which essentially knocks me down. Last week, they said they think we’re finally at a low enough level that they’re happy with. But I’ve definitely felt the difference. I’m more lethargic and achey than I have been in the recent months and the waves of nausea hit me whenever they please. And I’m just over feeling achey, or tired or nauseous or having a headache. I’m so anxious to feel “normal” again.

I don’t know what I wanted out of this blog post other than to get my frustrations out. It’s been 20+ months of treatment and not feeling well and I’d be lying to say I wasn’t more than ready to feel like a healthy individual again. Lucky for me, I know that day will come. Hopefully in 4 months and 1 day. (Yes, I have a countdown app. #SueMe)


As always, thanks for listening. Thanks for caring. Thanks for being there for me as I continue to walk down this road to regaining my strength and health. It means the world to have you all beside me.
Lots of love & light,

Jessy

The Date is Set

March 26, 2016.

This is going to be a big day for me. This is the day I will have my last treatment of chemotherapy. I will walk into Dana-Farber, see the most amazing people in the world, get an infusion of cancer-killing, leukemia sucking drugs and then I will walk out, head held high and I’ll be damned if I ever walk into Yawkey 8 as a patient again.

It will be a day I waited 764 days for.

This Wednesday, I sat in the chair next to Dr. D and when he asked if I had anything else I wanted to talk about, I just blurted out, “when does it end?” “Can I have a date?” “I need a date!.” Honestly, I really didn’t think he was going to be able to pin point it for me, but he pulled up his calendar and did just that. It was so what I needed. I’m so grateful that I’ve made it through over a year of this battle but I’ve been feeling overwhelmed lately with how much longer I have to go. It’s different having pieces of your life back, like work and exercising but knowing that you’re still sick, that you still have a long way to go to make it out of the woods. Knowing the date gives me something to look forward to. To set my mind to. A much-needed finish line in my own little marathon.

Today is National Cancer Survivors Day– I don’t fit into this quite yet because I’m only half way there. i’m in remission, but I’m not cured. I have survived a lot in the past year but I haven’t gotten through it all. Next year at this time, I will feel incredible relief and gratitude if I am lucky enough to go for a walk on a beautiful June day and know that I’m two months passed my last chemo infusion. Two months into the rest of my life. It will feel unbelievable to be a survivor.

So let the countdown begin. 292 days to go.

XOXO,

Jessy

Bad Hair Dayz

A year ago this week, I chopped off my hair. I was rudely reminded of this via my Timehop (that app is the best at times and worst at other times). I had taken this picture the night before I knew I was going to have it cut.

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When I saw it on Monday night, I instantly started crying. I became overwhelmed with sadness, like I was looking at a picture of someone’s who died. It sounds silly but I miss my hair SO much. I miss putting it up in a pony tail. I miss straightening it. I miss curling it on nights I want to look pretty. I miss the feeling of brushing it or having someone play with it. I miss everything about it. My whole life I had had long hair and that’s the way I liked it. There are lots of bad things about chemo but the loss of your hair has to be one of the worst.
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It seems fitting that I’d have all these feelings come flooding back this week. During the past two months I’ve been losing my hair again. It hasn’t all gone but it’s been thinning pretty rapidly and it’s gotten to a point that I don’t know if I should start wearing my head wraps again. It’s hard because now that I’m back at work, I don’t want to be looked at differently and wearing a head wrap will absolutely make that happen. But at the same time, looking like a balding old man isn’t exactly how I want to be viewed either.
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With all that said, something I’ve learned is that in the end, looks don’t matter much. They feel like they matter, they feel like they matter a lot, but the important people in your life will love you with or without hair. Friends will still hang out with you. Coworkers will still have lunch with you. Boyfriends will still slow dance with you. Family will still be there for you. Life will go on. But it’ll be hard and it’ll be frustrating and it’ll be sad, but life will go on.
XOXO,
Jessy

Hard Times, Good Times

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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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.

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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

The Next Chapter

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.