Tag Archives: cancer sucks

A Lot Of Worry but a Little Light

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This week has been hard. Harder than expected. What I would’ve expected is pure excitement, pure elation that the road is coming to an end. But instead, I’m feeling overwhelmed with a mix of emotions, most of them being sad and scared if  I am being totally truthful. 

Tonight is no different. Tonight I feel scared and I feel anxious. Tomorrow I will wake up and go to the Dana for my last scheduled bone marrow biopsy. I always become really nervous before these procedures since I find them really painful but more than that, I’m nervous of the results. I won’t find them out until next week, but tomorrow will be my last “check” for leukemia. The “what if’s” are worrying me. Well, it’s not exactly plural- it’s singular- it’s “what if there are still leukemia cells in my bones, in my blood?” I literally don’t know what I would do and I can’t bare to imagine it, but I keep imagining it. 

The flip side is that if the results come back negative and there is no such leukemia in my body…….. Well, there are no words for that. 

As I walked into my driveway tonight, I smiled to myself as a small flower has finally begun to pop through the dirt and show its colors. I photographed this same flower two years ago when I had returned home from the hospital as it reminded me of new beginnings. Today, it once again reminded me of new beginnings and a renewal of hope that I so desperately needed. There she goes, Mother Nature making her presence known and love felt. Always remember to look for the little signs. 

  
If I could request it one last time, I’ll take all the good vibes, prayers and positive energy tonight that you can spare. 

All my love & light,

Jessy 

A Moment In Time Reminds

I’ve been looking through a lot of old pictures and videos today. I have tons of these videos, me by myself, talking about the day. This one struck me because I watch this and know how hard it was. I am so excited to #nuketheleuk but I think processing what a difficult journey this has been for me, helps me heal.

I’ve come a long way since this day, buzzed head sitting alone, looking out the window but these raw moments were the reality of my days. Not each one cheery or inspiring. 

On a brighter note, i got my second to last treatment today. Friday is the bone marrow biopsy and one week from tonight I will be a cancer treatment graduate. 

All my love & light, 

Jessy

Steroids Have Me Like WOAH

It seems only fitting that my last round of steroids, after literally too many rounds to count, would hit me SO hard. I literally had six emails from myself this morning when I got to work, all which I had sent from about 1130-1am last night as I could not get my mind to shut off. And today, I just couldn’t stop. Couldn’t stop talking. Couldn’t stop thinking. Couldn’t stop step marching on my way home. Just couldn’t stop. I wish leukemia had a visual bunching bag so I could just destroy it right now. I am so amped up it’s incredible. These steroids are so powerful though it’s just crazy to think about — I go from such extremes highs to such lows when I come off of them. They mentally and physically affect me beyond what I can explain. They have pretty much been the bane of my existence for the past 2 years so I am SOOOOO EFFING EXCITED FOR IT TO BE DONE. LIKE AHHHHHHHHHHH!!!! Three days from now I’ll take my last dose of steriods, hopefully, EVER!!!! Anyways, to be able to remind myself of the CRAZY that comes with the high days– I recorderded this video that I thought I’d share. I look crazy but that’s how I feel right now. I hope it makes you laugh. #NEUKTHELUKE BETCHES!

 Happy Friday everyone– enjoy all the bliss of your weekends!

Lots of love & light,

Jessy

Two Years of Bubble Girl

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2yearspic

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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I 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?

leni

 

Breathe in the Now

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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 

A Slap In the Face with Reality

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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

 

First of the “lasts”

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Today was a big day for me. 

Today, Januart 20 2016, I sat with Mike at the hospital for about 7 hours 

Today I got a spinal tap. But this spinal tap was different, I still had Beyonce blaring and my healing stones in hand, but this spinal tap was my LAST one. This one is a check mark off my treatment list. 

This video are some moments from today. I want to begin recording things more as we go to the end, I gotta remember everything! This is a weird time in my life but it’s a special time and I never want to forget it!

https://youtu.be/t1kIIW0Tjps 

Thanks for all the positive prayers and vibes going into today. I’ll get results in s few days. 🙏🏼

Lots of love & light,

Jessy

Onto 2016

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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 

Own Your Story 

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I didn’t do a motivational Monday post last week because I couldn’t find anything fitting. Lately I’ve been feeling anxious. Feeling overwhelmed knowing that the end is FINALLY in sight. How if it’s not all I have dreamed it would be? How if it’s not really the end of my road with leukemia? I had spent the previous Wednesday, in a private infusion room because I needed to be alone. Because I couldn’t stop randomly crying. I hadn’t been able to sleep the night before thinking about all those what ifs. Those thoughts then lingered in my head throughout the morning and shoved me into a downward spiral to negative thoughts and depressing feelings.

 It took me three full days to get out of the slump. I took a lot of licks from Phoebe and hugs from Mike. Words of encouragement from my family. And advice/love from my incredible team of nurses. I needed everyone’s support. This time, I couldn’t do it by myself. 

So last Sunday night when I went to find a motivational Monday post, I just couldn’t do it. I felt like too much of a fraud to try to be motivating when I had been unable to motivate myself in the days prior. So today’s post is about being true to yourself, being true to your story. We all have our moments of strength which are great to embrace but we also all have moments of weakness, whatever that may be. And that’s okay. We can’t always be strong. We can’t always have a smile on our face. We’re allowed to have a bad day. Or two, or three. Or however many it takes to get your mind right. 

So while I certainly don’t wish bad days upon any of you, I also understand the realities of life and that it’s bound to happen. So my hope is that you can embrace those days or moments and allow yourself to try to really feel your feelings. Allow yourself moments of weakness and love yourself anyways.

This was my story last week and I know I will continue to struggle with this far past March 26th but I’m going to try to learn to embrace it a little more and love myself through the moments of weakness.
Lots of love & light,

Jessy 

P.S. Belated Merry Christmas to all my readers. I had a wonderful few days with Mike’s family, my family and then a day at home in our pjs with our little family! I hope your day was wonderful! I’m going to post pics later this week! 🙂

Giving Tuesday

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When I was diagnosed with leukemia on February 20, 2014, I had a doctor that held my hand and looked me in the eyes and told me that she was going to fix me. From that very first moment, I was terrified but I had a sense of hope. That sense of hope has been the crux of my strength for the past 2 years. Hope that I will survive this…hope that I will get my life back…hope that I will live to have my own children. When someone is diagnosed with ALS, there’s no such hope. They are told they have most likely 2-5 years to live in which they will gradually lose their abilities to do almost everything except for think. They are told that they will no longer have the physical capability to breathe on their own, but they will have the mental capacity to know exactly what’s happening. They are then told that there’s currently only one treatment for this disease and that it will likely extend their life 2-3 months. 2-3 months, that’s it.

I want these people to be given the same hope that I was given. They deserve it. That is why I am so humbled and honored to be working for ALS TDI, an organization that is entirely focused on research to help #endALS‬. An organization that is working tirelessly to help give these incredible individuals the hope they so deserve.

Today is #GivingTuesday. It’s a day to remind ourselves of what this time of year is truly about– not deals on Black Friday or Cyber Monday, but giving to those we love and to those in need. I ask that today, even if just $5, you donate to ALS.NET and help us towards our goal of finding a cure for this terrible terrible disease.

https://www.als.net/donategivingtuesday

 

Lots of love, light & gratitude,

Jessy winston churchill