I Worried. But it’s okay, cuz I’m Yonce Anyways 

 First  off, I can’t begin to express the feeling of overwhelming love and support I have felt this past week and especially in the past 24 hours. Without doubt, your prayers, radiating energy, good thoughts and positive vibes are what allows me to say that I HAVE AMAZING NEWS TO SHARE!!! My numbers have bounced back up so I am no longer neutropenic and I am able to get back on my treatment today! My bone marrow is cancelled until we need to do it during the final week, which is now currently scheduled for March 30th!!!!! We’re cutting one of my nightly chemotherapy pills in half the dosage so that the lower dosage will hopefully mean that we don’t have more issues like this. Obviously if I come in next week and the numbers have plunged again then we’ll have to reconvene but for now, I am able to go to work tomorrow and go to my retreat this weekend. Right now my heart feels so full, my body finally feels relaxed  and my mind is still buzzing but with all positive energy.

This was the Instagram video I put up right before coming in. My comment was that ” eff you leukemia, you can’t break my spirit.” And I was right, didn’t and won’t ever break my spirit!!!

My spirit has been able to stay strong because of all of you incredible souls who send me positive energy, prayers and well wishes. It’s what pushes me through weeks like last and helps keep a smile on my face.

So thank you, for the thousandth time, thank you! You are all amazing and I am forever grateful. 
Lots of love & light,

Jessy 

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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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Breathe in the Now

  
It’s 10:30pm and I’m watching the Grammy’s with Phoebe on my lap. Ending what’s been a really great long weekend. Decide to check my TimeHop and this pic appears from 2 years ago. 

UGH.

My chest is now tight and I feel anxious as hell.

This pic was taken a few days before my diagnosis of blood blisters that had appeared on my lips. I remember when I woke up in the morning and I felt them in my mouth then went to the bathroom to see what it was, my stomach flipped. A lot of funny things had been beginning to happen to my body like bruises all over my legs and bloody noses and this got me worried. This made me think, “I hope everything is okay.” 

I hate seeing this picture because it floods my body back to those days leading up to being diagnosed when in my gut I knew something was wrong but mentally I wasn’t admitting it yet. I hate having to think of that time because it makes me feel sad for myself at that point. 

On Saturday morning, Mike and I attended our local (and amazing) yoga studio who has the most inspiring teacher. At the beginning of the class, she reminded us that we can never take a breath in the past and we can never take a breath in the future. We can only ever breathe in the moment. Those words resonated with me a lot on Saturday because I know I often can get stuck on worrying about things in the future but right now I remember her saying that as it reminds me that I’m not in that moment 2 years ago, I’m in the moment now… On my couch, with my two loves, and only a little over a month to go left of treatment. I’m here now. I’m grateful for this moment. I’m happy with my life at this point. 

So when you’re stressing about the past or the future, just remember, you can only take a breath in the current moment. Breathe in all the beauty of this moment, right here, right now.

Lots of love & light,

Jessy 

You Win Some You Lose Some

Today I won a little and I lost a little. 

Good news is that I’m off house arrest. My counts have risen enough that I can go out in public again. 

Bad news is that my counts didn’t come up as much as they needed to begin treatment again so we’re paused until we try again next week. So, I won’t hit the March 16th date. I had so wanted to keep that date and not be pushed back but I also realize that in the grand scheme of things, looking back at the two years, one or two weeks extra really isn’t going to make a difference.

So although today was not what I had hoped for I still had a pretty good day.

It started with feeling a little silly in my mask  but then realizing I’m exactlyyyyy where I shouldn’t feel silly at all. 

  
After getting my blood drawn I headed over to my favorite floor at the Brigham to bring them a boatload of Smile Cards. I have received nearly 200 from various students in NH & MA over the past few weeks which is so amazing. One of my all-time favorite nurses was there and I haven’t seen her in monthsssss so we got to catch up which made me smile.

  
Then I went and had some QT time with my Dr. D’Angelo aka Dan the man with a plan. We looked at my results from a recent CT scan which was really fascinating and things are looking good! 

Then since I wasn’t getting chemo, I had to go over to infused to have my port de-accessed and my three favorite nurses were ALL there at the same time. MY DREAM! Plus one of them it was the first time I’ve seen her from coming back on her maternity so it was fabulous to give her a hug and see pics of her little princess. Then we just got to spend some time the four of us chatting and laughing. These girls are the best and I literally consider becoming a nurse just so I can hang out with them everyday.  

 
Then I packed up and went down to the chapel as I typically do, but today since its Ash Wednesday I was able to get the ash cross put on my forehead which was nice.

I got home and decided it has been a week since I had gotten to be in public so I packed Phoebe up and we drove over to a local walkway along the Mystic River. It was cold but we were bundled and the princess was happy to be out and about. And we saw the beautiful Swans! 

   
 
Then we sat on a little pier and took a momma puppy selfie.  

    
 
We ended our night doing a very important first for a mother daughter duo: WE WENT SHOPPING!!! And oh boy does Phoebs love the shopping. Her harness has gotten too small so we had to get her a new one so she picked it out along with a hair brush and new ducky toy…obviously she needed another toy she said.  #chevronforever

 
When this shopping pair came home, dinner was on the table courtesy of Mike Stevens. ❤️❤️❤️

So what could’ve been a crummy day turned into one that had a lot of smiles and a lot of warmth from lots of different people. Thank you to everyone who has sent me words of encouragement, love, prayers, good vibes, positive energy– or just thought of me. I truly believe it’s all so important and I appreciate every bit from the bottom of my heart.

So next week, we just try again. 

Lots of love & light, 

Jessy 

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

 

Taking It All In 

  
I can’t even believe I’m walking along the Charles River right now.

It’s Februrary 1st. 

I know there may be bigger reasons to why the weather is acting like this but as I’m living in the NOW, I’m so grateful that I feel the sunshining on my face, the breeze of the water drifting by and the beauty of the city in front of me.

I feel so lucky at this moment.

Take it all in, whatever your moment is, take it in!

Lots of love & light,

Jessy