Breathe Easy Lil’ Weezy

Dear Lil’Wayne fans,

I’m sorry if I mislead you. This post is in fact, not about Lil’Wayne at all. I just needed a catchy rhyming title. In order to not totally upset anyone that clicked hoping to hear some news about Holygrove’s finest, here is a gif of Weezy dancing in front of an Audi.

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In other totally unrelated news…

Thoracentesis is the WORST, am I right?!

Otherwise known as a lung tap, a necessary evil after noticing an increase in shortness in breath over the past few months. At first I chalked it up to not being active enough but then it became more frequent and intense in situations that it should not occur at all.

I had this procedure twice before a while back. It is necessary when there is excess fluid buildup (called pleural effusion) between the lungs and the chest wall. Below is the before and after of my actual chest x-ray. Fluid exists on both sides but it is far worse where I circled it in red.

*Please note that the weird gadget you see so clearly on the left side of the image is my chest port. I can’t be totally sure, but I don’t think that having a port is quite enough to make me a cyborg*

Overall they were able to remove almost half a liter of excess fluid in hopes of taking some pressure off of the lung to breathe easier.

Now, the last time I had this procedure I described it in graphic detail and even included a diagram to illustrate. I do recall that this was poorly received by family/friends/readers so instead I will provide a less gross, creative representation of what a lung tap is kind of like.

You know, like if my body is a Capri Sun pouch, and the straw is the tube in my back, and the weird melting kids are fluid being extracted…

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Better?

I must give credit to the best crew: Evelyn, Laura, and Sheila for sticking with me, playing relaxing music, trying to make me laugh whenever possible, rubbing my arms when I was crying or the discomfort was too much, and not giving up even though my body was not totally cooperating.

If anyone was listening outside of the door of that exam room they would be met with utter confusion as the mood bounced pretty quickly back and forth from rip-roaring laughter to hysterical crying with some whale songs mixed in.

I wish I could say that I woke up the next morning feeling total relief but unfortunately I am still pretty short of breath. Not worse than before but not better. The hospital contacted me when I got to work yesterday and urged me to go back to the hospital as soon as possible for another chest x-ray as it appears there may be a “loculation” (jelly like pocket of fluid that happen from multiple lung taps) or “pneumothorax” (abnormal collection of air in the chest cavity from puncture in the lung).

Totally freaked out, I had an involuntary ugly-cry in my office and asked Doug (or front desk advising SAINT) to reschedule my last 6 appointments so I can leave by 2pm.

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Ever the voice of reason, Doug reminded me that my health is priority no matter how busy work is. He found a way to reschedule ALL of my appointments for the day so I could head to the hospital immediately. I am so grateful to my colleagues that always step up to make my life a little easier during tough times.

On my way out I ran into Laurie, a colleague that oversees many offices in my division, and despite her busy day she dropped everything and gave me a ride to Women and Infants. Normally I would drive myself but I was too emotionally drained to be stubborn when she offered. I’m so glad that I accepted the help and we ended up having a nice morning together (considering the circumstances).

I was able to have a speedy x-ray and speak with a radiologist. Luckily, it does not appear that the lung was punctured. THANK GOODNESS! It does appear that there is pocket of air outside of the lung. Because that air is there and shouldn’t be, the lung cannot fully expand which lends itself to the continued shortness of breath.

Sheila and Evelyn suspect that when we did the procedure and were having trouble finding the “sweet spot” where the fluid is and hitting resistance, she hit a loculation (pocket of jelly-like fluid) and that is now where the air is. This is pretty much the best case scenario because it would mean the air is not escaping from the lung and that in time it will just resolve itself. What a relief.

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So that’s that.

At the insistence of my colleagues, I’m taking a few days off to rest and let me lungs do their thing and returning to work on Monday.  I feel guilty for not being there during such a high volume time but as Doug said, it’s not the end of the world and everything will get done. I am no good to anyone else if I’m not 100%. I’m physically and mentally drained. I definitely need this time to get centered and take care of myself.

I’m always reminded of a lesson one of my graduate professors instilled in us:

There is a reason on planes that you put your oxygen mask on first before helping others. If you can’t breathe, you can’t possibly help anyone else survive.

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Also- there is a new treatment plan in the works but to be honest, this post is long enough. I’ll keep you updated soon. What I will say for now is that I will still have two more weeks of Taxol before we switch to something else.

Countdown to real hair begins!

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Unnecessary Excitement

It wouldn’t be a true Jess Sultaire day at Women and Infants hospital if I didn’t cause a little bit of trouble.

Today began as your average weekly chemo day would. Day 1 of another 3 week cycle: steroid, Pepcid, Benadryl, 1 hour of Taxol, and 3 hours of Carboplatin.

A little background surrounding Carbo. There is a risk of allergic reaction therefore you are required to take 20 mg of steroids the night before and the morning of chemo on the Carbo days. I was pretty confident that I wouldn’t have a reaction. I still took the steroids as a precaution but mostly because I’m a rule follower.

Even so, I was confident that if I was going to react to Carbo, it would have happened already.

Fast forward to the beginning of hour 3 of 3 for Carboplatin.

Amparo, our medical assistant, happened to walk by my room. It was nearing the end of the day so she popped her head in to say goodbye. Mid-sentence she interrupted herself to say: “you are all red!”. A look of concern came over her face. Of course, not realizing how I actually looked, I responded (perhaps a little too casually): “Nahh. I’m fine, it’s just hot in here.”

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With growing concern in her voice she called in the first infusion nurse she could find.

It turns out it was a potentially far more serious situation than I knew. All of the sudden EVERY chemo nurse had surrounded my bed. I’m not joking- there were 8 medical professionals crammed into this room. Everything happened so fast. I was having a reaction to the Carbo and the protocol is to act quickly.

*I should clarify before you get too concerned that luckily my only symptom of this reaction was turning Heinz ketchup red from head to toe. My airway was not restricted and I did not experience itchy palms.*

They swiftly hooked me up to the blood pressure cuff and pulse oximeter to continually monitor my blood pressure, pulse, and blood oxygen. I they pushed a dose of steroid and Benadryl directly into tubing to reverse the effects of the reaction.

Even though I was physically okay. Something happened, in my mind I was triggered.

The sudden rush of nurses and their collective looks of concerns tapped into a buried trauma. It was so reminiscent of the fear and confusion I felt when I went into septic shock earlier this past summer. I didn’t have a visual “flashback” but I very intensely tapped into that deep seeded fear and confusion where I didn’t know what this all meant. I began to experience an involuntary physical reaction to that fear- increased heart rate, shortness of breath, tears.I can’t be sure because I don’t believe I have had one before, but I think this could be classified as an anxiety attack. They placed oxygen under my nose to help me catch my breath while Betsy and Caryn rubbed my back and reassured me that I was okay.

I know I speak incessantly about the stellar care I receive at Women and Infants but it cannot go unacknowledged just how well they support their patients. In addition to every single nurse coming to my aid and knowing just what to do, they were incredibly warm and compassionate. One of them even ran upstairs to get Sheila because she knew we were close and thought she would help to make me feel comfortable.

If this blog ever ends up in the hands Mark Marcantano (President and COO of WIH), the following infusion staff deserve a massive raise and recognition as a result of this  particular incident: Amparo, Betsy, Caryn, Ann-Marie, Ivone, Beth, Susan, Sandra, and of course Sheila.

(Sidenote: Unsuccessfully tried to find contact information for Mr. Macantano to email him directly. If anyone has it, send it my way. Between GYN onc, the 4th floor of the main hospital, and the infusion center, senior leadership NEEDS to know the level of care that is being provided by these angels)

Anyway…

Over time the redness came down, I was able to catch my breath, and the fear subsided. Betsy told me that she would stay as late as it took for the redness to disappear. By about 6pm I was back to normal.

So after all of the months that I’ve receive platinum based chemotherapy dating back to 2013, why now? Why would I react all of the sudden?

While I had assumed (wrongly) that the more exposure to something, the more your body gets used to it, that is not true in this case. Over time your body can start to view the Carboplatin drug as an antigen, meaning a toxin/foreign substance/allergen. As a result, your immune system reacts by sending antibodies to fight against the antigens.

I kind of see it going down like this:

What now?

The next two weeks of my chemo cycle is fortunately only Taxol. When my new cycle begins we will likely do a “desensitization chemo”. This protocol is considered when a drug is seemingly working but a patient reacts like I did to it. Instead of going to the infusion center I would receive the treatment in the main hospital oncology floor. I wouldn’t be inpatient (I can go home when it’s done), but the infusion would be incredibly slow.

~1 hour for predrugs: steroids, Pepcid, Benadryl

~1 hour for Taxol

~6 hours for Carboplatin (normally it is 3 hours)

It’ll be a pretty long day but it’s a safer way to infuse and reap the benefit of a drug that could be working under close supervision.

Now, if this desensitization chemo still causes me to react, we will probably have to break up with Carbo. We could potentially just continue with Taxol only or maybe Dr. Robison will have another chemo up her sleeve to try.

So that’s that. I’m totally fine. Aside from feeling fatigued, I’m feeling okay today.

I will need to have Cory bring me to Providence to pick up my car from the hospital. I ended up needing so much Benedryl yesterday that they told me I couldn’t operate heavy machinery for 24 hours. Sarah Breen is an incredibly selfless human and no questions asked picked me up from chemo and drove me the 45 minutes home even though she worked all day (an hour away as it is). THANK you Sarah. I love you more than you will ever know for all you do and all you are.

I’ll end on a less dramatic, happier note:

My CA-125 dropped from 843 to 642 🙂

Progress.

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All Things Hair

Hair and I have had a complicated relationship over the past few years. Or perhaps all my life. How many times have we been guilty of looking in the mirror furiously straightening/curling/blowing out and announcing to no one “I HATE my hair”? Well that was before I started systematically poisoning myself and it all fell out. Now I kinda miss the little buggers. Imperfections and all.

Before I started writing this I went back in time to 2013 and 2015, the two other years that I was treated with Taxol (the chemo that makes your hair fall out) to remember how I felt about the hair loss events.

To recap:

2013– It was an emotionally challenging process. Working out your identity as a chronically ill person is not something that comes easily or happens quickly, and it’s never really “complete”. Losing my hair made the illness visible. At that time, I needed the wigs to reclaim my femininity (which I felt robbed off sans hair and all reproductive organs). I didn’t look or feel like myself so wearing wigs was necessary for my comfort.

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2015- Let’s be honest. I was SUPER sad to lose this hair. It had grown back darker, curly, and it was adorable. That said, I didn’t have the same emotional response to losing the hair. I had my head casually shaved by my girl Emily at the salon and went on my way.

Aside from work where I would wear a hat or scarf, I generally went bald most of the time and was very comfortable with that. I got the occasional second look from time to time, mostly because you don’t often see women with cue ball heads. It didn’t bother me. I had already done a lot of “emotional work” so this wasn’t as emotionally taxing as the first time.

What is strange is that even though I was on taxol pretty much all of last year, my hair randomly started growing back in the middle of it. Bizarre.

PRESENT DAY- After a short taxol hiatus we started up again in late spring. To be expected, my hair started to thin. I didn’t bother shaving it in hopes the same “growing back miracle” would grace me again.

No such luck.

I’m not emotionally attached to having hair. I’d rock a buzz cut again no problem (do you see how round my head is! My saving grace). But hair is just fun! It’s like an accessory. So in seeking out said fun, back to wigs I go…because- why not?

The talented Ky Michaels of The Ky Michaels Salon in Providence agreed to take on the challenge of updating my wigs. Actually I asked him to do one and he’s doing all three because that’s just the kind of gem he is!

I went in to see the finished product for the two that are ready and per usual Ky did not disappoint. I know he spend a lot of time and energy, at home no less, to make sure I ended up with hair that made me feel polished and pretty.

Mission accomplished. The wig pictured directly below used to be the length of the first picture. I love it. It’s bouncy, full, and I feel great in it.

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Look #2: A little longer for variety.

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In short, I’ll be sporting some new looks and now Cory has 4 girlfriends.

 

Eat, Work, Chemo

Knock on wood…

I’ve managed to stay out of the hospital for over two weeks now.

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Let’s let that one sink in for a minute.

I’m grateful for every second that I can live my life on the outside. We take slow, incremental steps to reestablish a sense of normalcy. It’s not easy…but it’s lightyears better than where I was just weeks ago.

1.) Going back to work

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Although have been working remotely throughout medical leave on projects, reports, etc. I’ve been transitioning back to the office little by little since mid-July. Part in person/part telecommuting. The nature of summer in undergraduate advising (after orientation of course) involves some sparse phone appointments but mostly administrative work to gear up for the next academic year. Degree audits to make sure your rising seniors are on track for graduation (and to light a small forest fire under the ones that aren’t), adjusting freshmen schedules to account for their AP/transfer credits, finalizing study abroad course contracts, prerequisite reports, and general ‘i’ dotting and ‘t’ crossing. It’s pretty low-key stuff but keeps me busy and isn’t terribly draining. That said, my return is well timed.

The fall semester is full on. Two straight weeks of walk-in’s during the add/drop period, classroom presentations and workshops, probation meetings, study abroad advising, registration advising, collaboration with other departments on projects/events and “other duties as assigned”. Student contact is high and this is where more of the student development piece (my favorite piece) comes in. It can be intense, but it’s truly the part I love the most.

Part of living with chronic illness is having to make tough choices about your limitations. As someone who fiercely cares about the work I do, I don’t like “scaling back” or not taking advantage of opportunities to grow in my role. One tough choice came recently when I decided to take a step back from a teaching opportunity in the fall. To be clear, no one at work made me feel as if I had to do this. I’ve gotten nothing but support to take on this additional role. I just knew that in light of this summer from hell, I didn’t want to put my students or the rest of the staff in a tough position if these secondary health issues were to persist. It’s just not fair to anyone.

For now I’m going to keep focusing on my advising role, partnership with the Honors Program, and advising the Colleges Against Cancer club. That keeps me plenty busy.

2.) Om nom noms (…eating)

Reteaching your body anything that is supposed to come naturally is nothing but frustrating. When you’re a baby learning how to eat solids you aren’t worried about the capacity of your stomach or if/how certain foods will digest. Babies eat, poop, occasionally throw up, and move on quickly into hysterical laughter when someone blows a raspberry on their belly.

When I say relearning how to eat, in this case, I don’t mean relearning how to chew or swallow. I’m referring to my atrophied stomach slowly growing to increase food intake and the intestines absorbing nutrients and passing the food without obstruction. It is easy to get in your own head and stress yourself out. There is a sense of urgency to gain weight because I’m super underweight but you also walk a fine line of taking in calories but not so much that you exceed the (very small) capacity of the stomach.

I have been off of TPN for just over a week now and luckily, I didn’t lose weight. I thought that my dietitian would be concerned that I didn’t gain this week because she really hammered home the importance of a 1400 calorie per day diet. Knowing that I didn’t even come remotely close to 1400 calories per day or even 1000 for that matter, I put myself in a tizzy and shed some involuntary tears when she asked how the week went. She was incredibly encouraging and reminded me that this is a process and that I have a lot to be proud of. Getting off of TPN and not losing more weight, actually digesting the food I can take in, eating at a restaurant, are all victories. I felt a huge weight lifted after that conversation.

So things I’ve mostly been taking in that have agreed with me: Stonyfield whole milk baby yogurt, blended fruit/vegetable pouches (yes also for babies), smoothies, cottage cheese, rice cereals, milk (cow or coconut), soft fruits without skin or seeds, very soft cooked vegetables without skin or seeds, bagels, grilled chicken, rice, noodle dishes (lo mein, pad thai), hummus, pita chips, soups, ice cream…

Oh and I was able to eat half of an insanely good reuben (sans saurkraut) the other day. I was in love and proud of myself for keeping it down.

I am fortunate to have a damn good cook in the house so it’s nice to enjoy Cory’s creations as tolerated in small portions. This week I actually ate a small helping of braised short ribs, crispy polenta, and mushrooms:

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Not bad for an architectural lighting salesman, eh?

I’m sure most people could house the above meal in two bites but that’s just about how much my stomach can take right now. It was perfect. I look forward to my stomach normalizing even more to take advantage of Cory’s natural culinary talents.

3.) Getting rid of the PICC

The PICC line was supposed to come out yesterday and I was supposed to have the new port placed this coming Tuesday BUT a scheduling miscommunication has pushed both back. I won’t have the port placed until August 15th which means I need the PICC for another week to receive chemo.

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I was disappointed but in the grand scheme of things, living with a PICC line for one more week is nothing in comparison to anything else I’ve had to do this summer.


So that’s it for now. I have a big weekend lined up with both Cory’s parents and my parents coming to visit. Should be a lot of fun to get everyone together 🙂 It’ll be good to see family after having a slightly emotionally challenging week.

Perhaps next week will turn around as flawlessly as Meyhem Lauren.

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There’s no place like home (even if you’ve only seen it once before)

We are approaching one week since I have been discharged from the hospital. This is (sadly) shattering my record from the past month of yo-yo hospitalizations.

Initially, I thought it would be uncomfortable leaving the hospital and moving into the new place. I didn’t even say goodbye to my old apartment. Like magic, with the help of a lot of friend/elves, I was just moved. Luckily the new house is a great place to recover and slowly but surely Cory and I are making it into a home.

What a stress-free environment. It is this little house with a perfect back yard and a garden. There are constant sightings of vibrant cardinals, bees, and hummingbirds. This morning I took my yoga mat into the grass and did some makeshift gentle yoga/stretching to get my body moving (after a month of being nearly sedentary). A bright red cardinal was perched on the tree above me the entire time. I couldn’t possibly be more “one with nature” in this moment unless I transformed into Bear Grylls and was dumped out of a plane into the Amazon.

Overall, my experience home has been the right prescription emotionally. I love our little town, the house we’re renting is comfortable and coming together, and my roommate is pretty easy on the eyes ;).

Since I didn’t actually write about getting discharged, I’ll keep it brief and stick to the important bits. They took incredibly good care of me there and kept the NG tube in up until about 30 mins before I left to be as precautionary as possible. But at some point your guts are going to do what they’re going to do and Dr. Robison felt it was best to get one more round of chemo in the hospital then go home and be normal*.

*”Normal”- not to be confused with ACTUAL normal living, but operating in a way that makes you feel somewhat free and human. Let’s call it normal light.

Going home was the best gift and the correct decision at that point. Dr. Robison also knows me all too well and probably anticipated that I would try to go back to work too soon. Just like a surgery, the body needs time to heal and repair itself especially after the added trauma of septic shock. That said, until I’m medically cleared I will be home for a little while and fondly thinking of my friends at Bryant from afar.

Unlike other discharges from bowel obstructions I’ve had, this time I was sent home having not even advanced to clear liquids. The only thing by mouth that I had in the hospital were Dum Dum lollipops (thanks to Sheila and Shakay for supplying). No, this time we were going to to sllllooooowwwwwwwwww as molasses to prevent ending right back up in the ER yet again. For now I’m still on Total Parenteral Nutrition (TPN) where I receive all of the calories and nutrients I need for the day over a 12 hour period right into the blood stream through my port. I’ve been supplementing this with tiny amounts (2-4 oz.) of watermelon Italian ice to reintroduce something into my system by mouth but that’s it.

Starting tomorrow, with the blessings of Sheila/my case manager/dietician, I am going to try small amounts of blended soups (like butternut squash) and pureed foods. Stocking up on baby food basically. I was advised to listen to my body and slowly reintroduce foods into my diet working up to solids (low in insoluble fiber). I miss real food but we are getting there slowly.

You can imagine how brutal it is when Cory (a very talented cook) is making dinner for himself. I awkwardly ask him to let me smell it and pretty regularly shove my nose in the direction of his food to at least pretend like I know what it tastes like.

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But Cory isn’t the only wizard in the kitchen. Watch the TPN master prep tonight’s dinner (with the help of some “muscle” to spike the bag). I made this video to take some of the mystery out of what is actually sustaining me and how I manage it (and cranked up the speed 15x as to not kill you with boredom).

What you’re watching:

  • Sterilizing pretty much everything with alcohol wipes
  • Injecting the TPN bag with additional vitamins and Zantac
  • Having Cory spike the bag because it’s not easy. You really need to jam it in there.
  • Hooking up the tubing to the bag and pump and priming the tubing to push out any air in the line.
  • Sterilizing the end of my already accessed port (the little tube hanging from my chest) and flushing it with saline.
  • Connecting the primed line to the port tubing and starting the pump. It’s all pre-programed so all I need to do is sit back and let dinner run through my bloodstream for the next 12 hours.

What you don’t see: 

  • The big white bag stays refrigerated but needs to be left out for about 2 hours prior to use.
  • I washed my hands thoroughly before starting the process, promise.

 

So what’s next?

Chemotherapy continues on Thursday bright and early in Providence. This is a Taxol only week so it shouldn’t be too bad. Oh by the way we are back on the weekly chemo regimen- every Thursday now. No breaks, no week off, no chemocation. We can’t afford to not be aggressive after all of this hospital business.

Put on your game faces folks.

As always I will keep you posted with a progress report. Thanks for continuing to send warm thoughts and wishes for improved health 🙂

I hope everyone is enjoying this gorgeous June weather and since I cannot- please eat double at barbecues and have some sort of boozy frozen drink on my behalf. (nom nom nom, in spirit).

 

Cautiously Optimistic

Chemocation, oh sweet chemocation. You sure have been good to me.

Since holding the Taxol my hands have returned to their original size. My appetite is much improved and the consistent nausea is all but gone.

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I am grateful for this break to rebuild my body as it has been taken a slow beating over time.

Well folks, let the good times roll because we have decided to continue to hold Taxol and only pursue Avastin for the foreseeable future. I believe I touched on this a few weeks back when I mentioned that we would do a CT scan and “re-evaluate” come summertime.

Ultimately it seemed silly to go back on Taxol for one cycle knowing we may hold it again shortly after. So here is the new plan-

  • Avastin (the antibody) infusion once every three weeks
  • Check up with the oncologist every six weeks
  • CT Scan on May 13th

If the scan shows improvement or at least no new disease, we can stick with this plan. Otherwise, I have the option to go back on Taxol. In any case, there is really no harm in just seeing if Avastin could be enough to keep me well.

One might be asking, “if Taxol has been working, why would you voluntarily drop it?”

My answer lies in faith and trust. I have faith that Avastin (alongside nourishing food/exercise/holistic practices) could be enough to give me the quality of life we have been striving for and slowly achieving after all of this time. I have trust that should this plan reach a point where is must change, we have safety nets in place. As Mom so perfectly stated today, it is perfectly okay to be cautiously optimistic.

So with that, let’s get excited for what is to come. Hopefully improved health, a new home, and a fresh chapter.

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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!

 

 

 

Make Plans and Cancel Them (Maybe)

We measure wellness constantly. In my world this is mainly accomplished by making me hold my breath while being shoved through an oversized donut (CT scan) or sucking blood out of my veins by a professional vampire (phlebotomist). Just last week my primary care measured wellness using a battery of blood tests that lead me to believe that she thinks I’m malnourished. BUT in the encouraging words of my PCP: (*clears throat for best thick Russian accent) “Just LEEETLE beeet more protein. You be okay.”

Not a week has gone by in recent years where I didn’t have some kind of medical test keeping tabs on me. Are my CA-125 levels up? How are my blood counts? How big are those tumors?

It wasn’t until just today that I realized there is another test of wellness, albeit a very simple and unscientific test…

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My willingness and ability to make BIG plans and keep them.

Now I don’t mean dinner and drinks on a Tuesday night after work (although keeping real pants on after 5pm is a drag). I mean looking six months down the road and saying, “Well, heck yeah! I’m absolutely down to fly to Iceland and explore aimlessly.”

Not that Iceland is set in stone but I use it as an example, a benchmark really, for my confidence in my body’s ability to behave for more than 10 goddamn seconds at a time. There was a time, not long ago, that the thought of leaving the country with this illness terrified me. What if I have an intestinal obstruction? What if I’m too sick to stick to our plans? Straying far from Women and Infants, my medical security blanket, seemed impossible.

Just a year ago there were days where I wouldn’t even commit to going to a restaurant in anticipation of throwing up endlessly and/or having my stomach explode.

Now, I’m in a place where I feel well-enough, more often. Not great all the time, far from it. But well-enough to take greater control of my desires in life and the confidence to carry out those plans. So when Cory pitched the idea of researching Iceland, my first thought wasn’t “holy crap what will I do if I’m too sick?”, it was “holy crap I totally need to save every spare penny to make this happen.”

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One of the best pieces of advice that I have continually soaked in from other cancer crushers is “make plans and cancel them”. Look to the future, always, but give yourself permission to back-out without guilt if you get there and your body isn’t cooperating.

So aside from the tumor markers and scans, my newest (and possibly most important) measurement of wellness is the frequency and manner in which I look to the future and make big plans. To plan beyond the everyday is certainly indicative of a slow and steady increase in wellness, quality of life, and most of all- PROGRESS.

See you under the northern lights.

Twenty-Eight

As of yesterday I am officially 28 years of age and it feels…pretty good, actually.

Some people hate their birthdays. Understandably comparing carefree youth with bills and perpetual acid reflux would sour anyone on getting older. Being that I am only 28, I am not a wise old owl in the position to tell anyone how to feel about birthdays but I am happy to share with you how I have come to regard my own.

From the age of 24 my body has been forced to share space with cancer- an asshole roommate that doesn’t pay rent and ignores eviction notices. I’m not one for focusing on survival rates and cancer stats because they’re not conducive to a positive frame of mind. Let’s just say, the stats are not typically in the favor of women with late stage ovarian cancer. That said, every birthday after 24 is more important than the last. Each passing January 4th is a trophy. It is a symbol that cancer isn’t winning.

Hey cancer- go kick rocks, I’m racking up birthdays here.

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On Sunday my parents passed through Providence for birthday lunch at Red Stripe. Anyone that knows Providence well can appreciate that a chilly-day calls for Red Stripe tomato soup and grilled cheese (with pesto, pear, and prosciutto…nom nom nom). They also kindly treated me with gorgeous flowers and a fruit tart. It was a really nice time to catch up with one another. Who better to kick off your birthday with than the folks that were there since the beginning- you know, that day when the stork dropped me off at their doorstep.

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Celebrations will resume this weekend but my actual birthday was just a quiet day at work followed by a quiet evening. Call me boring but after all of the fun and travel surrounding December’s holidays I’m happy to stay put and have some downtime. The festivities will resume this weekend with friends.

I was so touched by all of the phone calls, text messages, emails and facebook well-wishes yesterday! I am a very lucky girl to know so many thoughtful people.

Reading all of the kind birthday messages left me feeling like Ron Swanson on Snake Juice. THANK YOUUUUU!!!

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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.

 

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(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