Recovering as George

First, I must thank you for the outpouring of support over the past week while I spent four nights in the hospital resolving the obstruction in my small intestine. The words of encouragement mean more than you know especially when you feel like much is out of your realm of control.

I was discharged on Wednesday and have been trying, successfully I might add, to proceed with a high level of self-care. I pretty much needed to fight all of my natural instincts. So basically I’m operating on the “Constanza Principle”…

 

  • Instinct #1: I haven’t been at work in many days and I have to go back on Thursday or the world will explode
    • Opposite action: I was strongly encouraged and well supported by my supervisors and colleagues to return on Monday when I was feeling better. I was admittedly starting to feel anxious as my inbox piled up with questions that I couldn’t necessarily answer from home so I made a compromise with myself. I slept in on Thursday and at my leisure went to my office for an hour MAX, closed my office door, knocked out enough to feel less anxious, and went home.
  • Instinct #2: I am discharged which should mean that things are improving. There is nothing to talk about.
    • Opposite action: The night I was discharged one of the first things I did was email Dana, my social worker, at the hospital and ask for an appointment this week to “debrief”.
      • I will write more about this next week but one thing I have learned time and time again and not properly addressed is that when you are hospitalized you have experienced a trauma (anyone who truly understands what it’s like to have an NG tube placed while you’re awake can give me a chorus of “amen sister!”). Trauma’s are not all blood and gore- you are in a vulnerable position, you are not in control of what is happening to you, it is a trauma, period.
      • I went into my appointment not fully knowing what I wanted to talk about. Truly, I walked in there feeling pretty stable. As I anticipated there are issues that bubbled up that started with the hospitalization and weaved into other concerns both medical and non-medical. This appointment was the best gift that I gave myself this week. To express certain concerns out loud, to validate feelings, to have a good cry in a safe space where I don’t feel inclined to edit my thoughts- it was truly healing. I’m glad I nipped this in the bud.
  • Instict #3: Resting = Sitting in pajamas and binge watching TV
    • Opposite action: 
      • Ok fine I totally binge watched The Wire and old episodes of Veep on HBO. BUT I honored myself in other ways too!
      • I invested in my body by booking a massage at the Alayne White Spa. I didn’t truly know how many knots existed in my back until I got on that table. At one point I was face down and was so relaxed that I dosed off. I woke up to my mouth gaped open like an idiot and I was totally drooling on the floor through that little face hole. I’m 99.9% sure I didn’t drool on the massage therapist’s sneakers. Fingers crossed.
        • Funny aside: As I was on my way out post-massage I ran into Heather (infusion center nurse manager) and Nancy (4th floor oncology nurse). They were there for facials that they won at a silent auction. One would think that any reminder of the hospital the day after a hospitalization would conjure up negative feelings. I was just so happy to see these lovely faces outside of a medical setting I had to fight back happy-tears.
      • In addition to the massage I also treated myself to some time in one of the more peaceful venues in Providence, The Duck and Bunny. I enjoyed a quiet snack of crusty break drizzled with olive oil with Narragansett  Creamery ricotta and a pot of chamomile tea. It was calming and so good for the soul.
  • Instinct #4: I’m out of the hospital which means I’m capable of doing things for myself
    • Opposite action: Sucking it up and letting people offer their help because it just makes life easier
      • Mom and Dad cleaned up and did my laundry so I could come home to minimal work (seriously, gems). Also after arriving home after 15 minutes of me trying to convince them that I’d “figure out” something for lunch, I gave in and let them indulge me in a sandwich from Olga’s. I would have probably made a PBJ so they called my bluff.
      • Katie “Mamamamamabear” Carlson gave me a ride to Beth and Brendan’s house to dye easter eggs with her family. Sure, I could drive myself but it was very nice to have a ride. (p.s. I’m not very good at dying easter eggs #jewishkidproblems)

 

So there we go, trying desperately to practice self-care that I speak so highly of but don’t often practice.

Off to spend the weekend with my parents and back to work on Monday, hello sh-normalcy!

 

 

 

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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 

 

The Pine Cone

 

I had lunch with  a friend at work today. She is a fellow cancer crusher and beat the crap out of some breast cancer last year. Unfortunately due to the timing of my recurrence, the holidays, traveling, busy work schedules, and what have you, I was never able to tell her that I had recurred. In some respects it was harder for me to tell my cancer-crusher friends about my recurrence. I feared that I would trigger any lingering fears they had regarding their own medical challenges. It did not feel right to just send something like this through a work email:

To: Judy

From: Jessica

Subject: Womp womp

Hey Judy,

Any fun holiday plans coming up?  Oh by the way I have cancer again. How are you?

Keep it classy,

Your pal Jess

Needless to say, Judy ended up finding out through my blog. Two months later we were able to meet and talk about it. Now something you should know about Judy is that she has a phenomenal perspective when it comes to illness. We share a similar viewpoint that all of this chaos has to serve a purpose. With her insight came a bonus gift:

pinecone

She said that this is a very special pine cone. It came from a Sequoia tree.

YUP this kind of tree:

TreeBig

Impressive, no?

Judy explained to me that in order for this little pine cone to turn into a massive and beautiful tree, it must burn. In order for Sequoia trees to regenerate, they must be exposed to the extreme element of wildfire.

The pinecone is now in my possession to remind me that through the chaos of the fire (cancer), I am on the other end determined, wiser, and stronger than before. No longer a mere pine cone.

What a beautiful metaphor.

A zebra amongst horses

You know your life is jacked up when you are delivering the following as “good news”.

Good news everyone! I went to Mass General in Boston yesterday, escorted by the lovely Sheila Enderby (my chemo nurse). We had a consult with Dr. Dizon, a former W&I colleague of my oncologist. I entered with the intention of learning about a trial chemo that I qualified for at the recommendation of my gyn. oncologist.

I sat in the little examination room with Sheila before the Doctor came to see me. Anxiety through the roof. A sweet, 24 year-old medical student came in and took an extensive history. As much as I liked her, my nerves were getting the best of me, and I wanted to rip her head off if she asked me ONE more time the age of my first menstrual cycle. I think she was nervous and trying to be thorough. Seriously though, how many times do I need to answer the same questions? After the medical history interrogation, the doctor finally came in an hour and 3 minutes later (but who was counting?).

When Dr. Dizon walked in, I instantly loved him. He is a small, stylish, Filipino man. He wore a purple velour sport coat and matching purple socks. His outfit was completed with a bow tie. He put the CT scans on his computer and we looked at the images together. He showed me exactly what I was looking at and pointed out where the tumor is. You could tell that he was surprised and relieved to see that it was small and only in one location.

He confidently told me that it was his professional opinion that treatment beyond surgery is unnecessary at this time. I think we all let out a collective sigh of relief as there were talks of chemo initially. Cue twisted thinking: Thank goodness it’s only a little bit of cancer! Thank goodness I only need another major abdominal surgery!

He said “On this earth there are horses and there are zebras. You my dear, are definitely a zebra.” This is a really polite way of saying that it is effing bizarre that I have the disease that I do. He also said something that helped me to reframe my thinking surrounding this illness. He is a straight shooter and flat out told me that this may not be the end. This could be the beginning of many more recurrences. He basically said to consider it to be like my own version of diabetes. It’s not ideal, it’s not good, but as it comes we will treat it to the best of our ability. If it comes back we cut it out. Grow tumor, find tumor, zap tumor, lather, rinse, repeat.

So many times over the past week my friends and family have heard an emotionally-taxed me say “is this really my life?” Dr. Dizon essentially said yes, this is your life, but we will do everything we can to manage it. Before the goal was to never do this again. I was sure that my cancer was one and done. His honesty forced me to embrace the fact that, yup, this is my reality. Who knows, maybe I’ll never have a recurrence again, or maybe I will. Either way right now, it’s not a death sentence.

This has not stopped me from thinking about mortality. I know you’re thinking, “oh stop you’re going to live until you’re 96 like the rest of us poor souls. Stop being dramatic.” I am sure that I am scaring my mother right now by writing about death (Sorry Mom, but don’t worry. I still plan to outlive you). I had a long existential life talk with Sheila yesterday and I realized that I am less afraid to die and more afraid to live an unfulfilled life.

It may sound extreme to think about but sometimes you have to go to that dark land of “what if” sit with the irrational fears, grieve, make peace, and come back up for air. So that is what I am doing. Problems only arise when you get lost in the land of “what if”. Do not fret my friends, I do not intend to stay there. It’s healthy to visit but not to move in.

My biggest fear surrounding living with the prospect of continued disease is having it prevent me from reaching my goals. I’ll be damned if cancer-recurrence prevents me from traveling, publishing written works, celebrating the accomplishments of friends and family, growing professionally, watching my students graduate, adopting children, and/or marrying my future best friend (TBA). If living with disease means needles, blood work, surgery, recovery, hospital beds, CT scans, and medication, so be it. After last year, short of getting shot in the face with an AK-47, I can handle any physical challenge that comes my way. I just don’t want to miss out or continually feel like my life is on hold. Although looking back at my photo review of the past year I guess I did a better job of “getting busy living” than I thought. Perhaps this is all within my control more than I think.

End rant.

Anyway, I will be channeling my inner Esther Garbus as I approach surgery #5 with feisty energy. Perhaps I’ll also channel the “I don’t deserve this crap” anger into scaring the piss out of my tumor so it never grows back.

On a lighter note I had the most lovely day in Boston post-oncology consult with Sheila. My chemo nurse, on her day off mind you, took the time to come to my appointment with me cross state lines and proceeded to take me out for celebratory cocktails after at the Liberty Hotel:

Image

This is the selfie we texted to Dr. Robison, my primary oncologist, after receiving news of no chemo:

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I am so lucky to have this medical team. They are family. I don’t know many other medical professionals that care more about their patients than these people. I love that I can go to an oncology consult and follow it up with lunch and cocktails with my nurse. We can talk about life and death and laugh about it. It’s remarkable.

I’ll end by saying thank-you again for the continued support! I will be updating the chronicles as details unfold regarding surgery and recovery timeline.

With love and gratitude,

Jess

“We’ll go up, up, up and everything will be just fine”

I am feeling such a surge of positive energy! I don’t know where it came from, or why, but I am not one to ask questions. If I am feeling on top of the world, I’ll take it. Perhaps it is because I have been channeling the vibrant and brave energy of Zach Sobiech by listening to his song non-stop today:


I am in week three of the Transition to Survivorship group. I find that not a ton of what we  cover fully applies to me. For example, this past week a representative from Livestrong came to teach us exercises to help with cording and lymphoma (common in breast cancer patients). She is operating under the assumption that we are all breast cancer survivors. This is true for most of the group, but not all of the group. I am happy to see that some members reaped the benefit of her presentation so it was not at all a waste of time. Part of being in a support group is supporting each other more than getting support for yourself.

What I have gained from this group is an ongoing opportunity to be introspective. We often talk about “what is my place in all of this?” more than “why me?” I am certain that every woman in this group has anger and resentment regarding this illness but generally I hear people saying “what can I do now?” in a productive sense.

I think about this constantly. I lived. My chances of dying were huge and apparent but I got to live. What now? This is two dimensional. One dimension is “what do I need now” and “what can I DO now”.

What I NEED:

What I need is the camaraderie of young cancer survivors. I need to talk to an interact with other young people that are facing/have faced this disease in one way or another. Today I took action. I joined the www.studpidcancer.org facebook page for the Northeastern chapter. Stupid Cancer is an organization that supports and advocates for young people with cancer. There was a regional conference in Boston that I missed but other than that I haven’t seen much activity in my area. So I took the plunge and decided to post on the facebook page. I simply asked if there were any other young people in the Providence/Boston area that are involved in Stupid Cancer events or meet ups. It turns out that I am not the only one because within a few hours I had nine responses! It seems as if I am not the only young survivor feeling a little isolated. I proposed that it would be fun to have a little meet up event like dinner/drinks/bowling/etc. The social aspect is really important often more than an intense support group. It’s just really nice to know that someone knows, REALLY knows, what you are going through. In the upcoming months I hope to organize something between Providence and Boston to get together some with young survivors for a fun evening. I will keep you posted if this comes to fruition.

What I can do:

Now that I am healthy, strong, and have my normal life back, I am in a position to give back. I expressed this to my group on Tuesday. I feel like because I was so well taken care of, I owe the world in some karmic way. Little by little in small ways I will repay the kindness of others by putting that energy back into the world to the best of my ability. Thanks to the Livestrong rep I learned that I can host a fundraising party with a local business. I have emailed the local RI chapter of the National Ovarian Cancer Coalition to propose an idea for a fundraising/awareness event in Providence. I do not want to reveal too many details until I have confirmation that I can represent this charity as a third party fundraising host but my fingers are crossed that it works out. Again, I will provide more details as they unfold. Even if I raise $100 it is a tiny bit more that we can use to find preventative care for women to screen for Ovarian Cancer.

Also- I want to publicly congratulate a dear friend of mine, Eli Dunn on his engagement to his beautiful girlfriend Pam. From the moment I met Pam I knew she was “the one” I wish all the happiness in the world to a wonderful couple.

Finally, I want to wish my Dad a very happy birthday! I will always be your little girl. Thank you for the love and support, always. Have the best birthday of your life!!!!

“I’m a tortoise Bro”-anonymous CMR runner

Let’s get facts straight. I am no perfect portrait of health and fitness. I try to work out a few times a week and a I try to make healthy food choices as often as I can. But I am certainly no dedicated paleo-eating/ marathon-running/calorie-counting/work-out-at-5am kinda girl. I just don’t have the kind of discipline and patience required for that (but I commend others that do!) I do my best to live a healthy lifestyle. Over the past few years I have been more active than I ever was and learned to actually like running. It makes me feel accomplished and athletic (when I was certainly not before). Let’s just say I didn’t need Lucy to pull away the football to look like Charlie Brown when attempting anything athletic.

When I got sick last year, even before I knew that I had the big ‘C’, I struggled to maintain the level of physical fitness that I had achieved post-college. This was due to the several liters of tumor fluid sloshing around in my tum tum (yeah, I said tum tum!). Through the hysterectomy and chemotherapy it felt like more of a pipe dream to be running again. On December 4, 2012 I couldn’t walk more than three steps without nurses holding me up. On September 28th, 2013 I ran 3.1 MILES at the Color Me Rad 2013 5k. 297 days after extensive abdominal surgery that resulted in the loss of muscle function in my left leg, I was able to gain back the strength to run 3.1 miles. I wasn’t the fastest runner there by any means, but I did it.

I do not think I would have accomplished this goal without the help of two people specifically: Meredith, my occupational therapist in Torrington, CT and Matt Weese, my personal trainer. These people never once gave me the impression that I was too damaged to reach my goals and for that I am so grateful for their support, encouragement, and patience in rehabilitating my leg and strengthening my body (and spirit!).

Here are some highlights (and shout out to Sarah Breen for being an awesome running buddy that day!):

CPVD13_10_01776_L CPVD13_03_02057_L CPVD13_10_02111_L

 

I am looking forward to doing my third Color Me Rad next year and hopefully move on to an intermediate race such as a 10k or another physical challenge like a Spartan obstacle type course (NOT Tough Mudder. Forget. That. NOISE).

I would also like to acknowledge my buddy Tony for getting back on his bike after battling Leukemia for far too long! Little by little, we’re getting there Tony!!!

I hope everyone is enjoying this crisp autumn season and staying well!