Three Years

About 20 days ago I posted a letter to myself in the form of ‘Dear Former Self’. It was an emotionally charged tribute to success in light of illness caught at a moment when I actually felt like I had my shit together. I meant every word of it and I am glad that ’20 days ago’ Jessica wrote it because ‘today Jessica’ really needed a reminder.

Today marks exactly three years since the diagnosis that re-charted my future. I can and do frame this anniversary as a celebration of life and thriving in spite of adversity. Honestly though, ‘today Jessica’ and ‘yesterday Jessica’, and ‘day before that Jessica’ are feeling pretty run down. Exacerbated by another week of chemo and an antibiotic in my system, I feel weak and worn out. My body aches, I’m exhausted, and my stomach is torn to shreds. Moreover, strong emotions float to the surface of my mind.

I left work a little early, curled up with my favorite blankets and watched a mind-numbing amount of Netflix. It turns out this was the best decision I could have made to honor myself today.

 

you'reonlyhuman

(My friend Kerri emailed this to me at work today and it couldn’t have been more well timed)

If I try to pull myself up by my bootstraps any harder I’m going to put my entire foot through the sole. So today, I take the advice of my parents, Cory, my friends, co-workers (and all of the other highly perceptive people that have nudged me to be kinder to myself).

On this third anniversary I do three things:

1.) Re-read ‘Dear former self’ and pat myself on the back for making it this far in spite of crummy circumstances.

2.) Allow myself to be sad (for now). This disease has a thousand silver linings but actually replaying delivery of diagnosis in my mind is incredibly painful and can be difficult to ignore. If only I could use ‘chemo brain’ to selectively forget that moment.

3.) I rest. I shut off my work email, silence my phone, and just allow my body to be still and comfortable. It is working on overdrive to fight the disease and super-overdrive to keep up with the unfair demands I put on it constantly.


 

On a final note, I cannot thank everyone enough that has stood by me over a long three year period of highs and lows. Through the fear, successes, disappointment, and hopeful moments I have never once felt truly alone. I thank you for every pep talk, prayer, or kind “how are you holding up?” check in.

From the bottom of my heart,

Thank-you 

 

Advertisements

“She is BALD, Jerry”

I will preface this entry by saying that I am fresh off of chemo this morning and still feeling the Benadryl haze. I typically try not write the same day I receive chemo. My fear is perceiving that I am … Continue reading

“Your stars will realign and things will get a little bit better”

I read this article in Cosmopolitan a few days ago (thanks Mom!): I Have Cancer…And It Sucks by 25-year old Deanna Pai, Cosmo Beauty Editor. Go ahead, it’s a quick read. I’ll wait… Crib notes for lazy bones: Deanna is young, has … Continue reading

Questioning Quality of Life

I haven’t written since the end of February…yikes.

Where we left off was with my unhappy guts. I had another consult with the gastroenterologist and she decided that although the x-ray showed no sign of lingering obstruction, it was not safe to perform a colonoscopy. The team at Mass General seemed satisfied with her professional opinion and it was agreed that we would forget about it for now.

Coming down the pike is a CT scan on April 1st. On April 7th my parents and I will be heading to Boston to find out my scan results and talk about my treatment moving forward. Regardless of what the scan results are, good, bad, or unchanged, I am requesting my final dose reduction. I am allowed one more and I’m running with it.

Since the last dose reduction nothing has changed. The side effects are nagging and constant. I have bottles upon bottles of medications to combat the side effects of this treatment and I am just left swimming in pills.By the standards of the drug company the side effects are “tolerable” but we all have our limits. This is not how I want to care for myself. Each day has been a struggle and I’m worn out.

I actually just sent an email to the medical team at MGH expressing my concerns and requested a dose reduction for consideration. The principal investigator of the study emailed me back 12 minutes later (on a Sunday night no less, that’s commitment!) and he was understanding of my concerns. He said that there is no sense pushing through this dosage with a crummy quality of life and that he would speak to the team and get back to me.

I am also setting up a consult with my homegirl Dr. Robison in Providence to discuss alternative options should the time come that I choose this study is no longer right for me. She also emailed me back right away (again, on a weekend!) and kindly agreed to meet with me after my CT scan to discuss other kinds of treatments that might be a little easier on me.

Quality of life is far too important to ignore. I do not know what my future holds with this treatment but I am determined to reignite the fire I had within me when this all started in 2012.

To start, I’ve decided to adopt The Unbreakable Kimmy Schmidt’s quirky theme song as my own:

Thank you Netflix binge and my hero, Tina Fey, for this delicious find.

Lastly, please send some positive and healing vibes to a friend of mine facing a recent cancer recurrence. Her name is Elyse, she’s a ball of excitement, and she is a cancer fighting BEAST. I had the pleasure of meeting her last April at the Stupid Cancer Conference in Vegas (and 24 hours later held her hand as she fearlessly got her first tattoo at the Hard Rock). She is all about pumping up those around her so it’s time for her to receive the same positive energy. #WorkItOut Elyse!

tattoo
elyse

(Photo Credits: Dan Shapiro)

“Hair so long that it looked like weave then she cut it all off, now she look like Eve”

20130717-122300.jpg

The emotional attachment to my hair has ebbed and flowed over the past few months. Some days I feel liberated and empowered other days I feel like my femininity and physical appearance has been compromised. There is really little rhyme or reason as to how I feel on each particular day but I think that is normal for all of us hair or not. Regardless, I have been pretty committed to the wig and rotated through a few different versions of my typical brunette self. The wigs are fun honestly. They have way more shape, body and volume than my own hair has ever offered me but it comes to a point where you’d rather just be dealing with your own mop especially in 90+ degree heat. I more or less committed myself to the wig look because I’m a 25 year old single female. Though I haven’t tried it, walking up to dudes at the bar, winking and saying “hey, you into bald chicks?” probably isn’t my best method of attracting the opposite sex. So wig it was.

Little by little I have been slowly going into public sans-wig. My most recent wig-less act was at Penn Station in NYC on my way home from visiting my Torrington loves. Penn station as you may or may not know is SUPER crowded so normally I would not go without hair in front of strangers in a situation where I was by myself . Tuesday I finally mustered up the courage to go without the wig to work as shown in the picture above. This was a huge milestone for me. I honestly had a knot in my stomach driving to work but my head said “shut up stomach, let’s go baldy”, and so I did.

Exposing my head in a picture in the safety and comfort of my own blog is way different than exposing yourself to your colleagues and students in real life. I expected some people to be polite about it and others to avoid the elephant in the room. Much to my surprise, the response was overwhelmingly positive. I’ve gotten more compliments than I did when I had long hair. How about that? Not that I ever had remarkable hair. It was average at best but it was long and could be straightened and curled and pinned and dyed. It could blow in the wind (usually in the wrong direction covering my face, definitely not sexy and windswept like a runway model). Despite all of the times I’ve tried to make my hair look perfect, the Sinead O’Connor look ended up being the homerun. I got positive feedback from people who don’t even know I had cancer. WILD. Bottom line, the positive feedback made me feel a whole lot better about my circumstances and perhaps I will go without the wig in other settings. If I’m feeling adventurous I may not wear it out this weekend but that is TBD. Baby steps, people, baby steps.

I would like to take this opportunity to give a shout out to a woman at Bryant, a fellow survivor, that went without her wig at work for the first time on the same day that I did. She looks absolutely stunning with or without hair. We had to laugh that we accidentally did it on the same day since we joked a few weeks ago that we would plan a day for the “big reveal” at work.

I guess we can chalk this up to another success.