6 Weeks In

I used to count how many months “down” I was. But tonight, I can say I’m a month and a half “in” and headed back to Dana Farber for the first time as a “graduated” patient tomorrow. It’s already been 6 weeks since I got my last dose of chemotherapy and my body and mind are finally beginning to truly heal. After two years of a tingly tongue and numbness in my fingertips, those underlying & continuous feelings have gone away. So have much of my fatigue, headaches and nausea are gone. I no longer have to stop eating two hours prior to going to bed because of a daily chemo pill. I’ve gotten to lift life restrictions.

I’ve had a dirty martini. 🙌🏼


I’ve eaten sushi.


I’ve gone in a public pool and hot tub and not worried about getting an infection.


And had a mani/pedi day with my best without worrying about going against doctors recommendations not to in order to reduce risk of more infections.


I’ve gone to the Red Sox game with friends and stayed out too late on a work night.


I’ve become obsessive over the new Beyonce album. (Download ‘Freedom’ and then try telling me she’s not my soul sistah)

I’ve done yoga and felt strong the entire time.


I’ve had a 24 hour get-away with Michael


I’ve lived six weeks of a “free me” and damn, it feels good.

I still have so much to work on and mentally get through; some days I’m good and some days I’m emotional. I still don’t know what I want to do with my life, I still don’t know exactly why I was given this second shot but I’m so grateful for it. I’m so happy to get to live my life!
Lots of love & light,

Jessy

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Meditating On Me

  

Often I think that people consider “meditating” as zoning out, as putting your mind to rest. But for me, I use it as a time to let all the things I have to be grateful for pass by in my mind as if watching floating clouds pass by on a day at the beach. Tonight, I kept thinking about how grateful I am for me. I know that probably sounds self-indulgent but that’s where my mind went. Throughout this experience, I’ve always wanted everyone to know just how grateful I was to every person that has helped me get here but in the end, I walked this path alone. I was the only one on the race trail– it was my journey. In many ways, I was alone. This feeling of isolation and loneliness could be construed as negative but I have come to look at it as a positive. I needed to truly be alone in something in my life… I needed to get through something so difficult, so emotionally and physically painful on my own. Yes, I had an absolutely incredible support system to which made my experience brighter, more fulfilled, more full of love, hugs and supported– but at the end of the day, I went through this every single minute of every single day. Others got to go home, take a rest, “get back to their life,” have a drink, go away for a few days to relax, get away from this all (as they all should have). But I could never fully feel 100% physically or emotionally away from the leukemia– it was always with me, always in the back of my mind- during the highs and lows and in betweens. And those feelings will  stay with me the rest of my life because this is still my journey. I’m still marching, I’m still learning. I’m still growing. I am so thankful that March 30th is tomorrow and my body will be able to stop receiving such harsh toxins but I believe that the journey I began on February 20, 2014 goes well beyond March 30, 2016. I’ll walk down this road for the rest of my life. As I should… 

I’ve grown on this road

 I’ve found love on this road

I’ve found myself on this road.  

    
    
 
 
    
    
    
         
    
    
    
   

        

   
    
    
   
   
    
    
    
    
 
   
    
    
 
   
    
    
 
   
    
    
    
    
      

    
  

 

  

  

  

  

  

   

        
   

  
 
   
 It’s been a long time coming, but the day is almost here. 

Tomorrow, tomorrow, I love you tomorrow. You’re only a day away.  

All my 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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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

 

January 12

  
Today marks one year since I went back to work. Today also marked a day of exhaustion for me. Today I was dreaming of having that winning billion dollar lottery ticket… I was feeling officially “over” being  a working woman. (Phoebe waking us up last night at 4am and basically not going back to bed added A LOT to those feelings.) I hadn’t remembered that it was my one year anniversary until I was home and making dinner. Instead all day I had thought about how tough it is to work when you’re tired and in general how tough working full time still is for me right now. How quickly I forget how blessed I actually am to be working? How quickly I forget that THIS is what I wished for for nearly an entire year.

I felt guilty about how ungrateful I had been all day when ironically it was a special “work” day for me. But then I’m writing in my journal before finally getting to go to bed (what I dreamt of all day!) and this quote spoke to me so much. I can continue to feel guilty about these natural feelings or I can take this as a lesson and be reminded of the blessing that it is to have a paying job and a career that I enjoy is. 

Lesson learned, teacher. 

With that said, I’m thankful to have been able to work for a full year, but it’s time for bed. 💤💤💤

Lots of love & light,

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