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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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