Notorious O.V.A.R.Y. in Action

September has great energy. A new academic year begins, the seasons start to change, and one of my favorite annual events takes place- the Silent No More 5k to benefit the Rhode Island Ovarian Cancer Alliance.

I am pleased to share that with the support of family, friends, and friends of friends, team Notorious O.V.A.R.Y. raised $2890 (exceeding my goal of $2000). As a whole, this event raised over $32,000 with donations still rolling in!

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I’ll chat more about the walk in a minute. For as many times as I’ve had to write about being in the hospital, needles, pills, NG tubes, and general unpleasantness, it’s important to highlight when life is just normal. That includes visits with friends, good meals, professional growth…pretty much any moment that is not spent clinging to life on my couch. So weekend recap- commence!

The weekend began with a visit from two of my childhood best friends, Stacey and Michelle. Our time together was filled with good food, a carnival on the beach, hot tubbing in the back yard, and several moments where I laughed so hard that I almost cried.

At the carnival we may or may not have shamelessly ridden a kiddie coaster and the “bear affair”. I’m guessing three 28 year olds are not the target demographic for these rides but hey, if we fits, we sits.

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Living in three different states and starting the majority of my weekends with chemo makes it difficult for the three of us to be together at the same time very often. That said, my heart was very full this weekend with these goons.

In the midst of their visit I did have to work on Saturday to facilitate a training for the MyPath mentors. The mentors are (mostly) juniors and seniors that serve as resources for students that are exploratory. Exploratory meaning, undecided about a major/career path, questioning their path, etc. It’s a fantastic program made better by these incredibly motivated student leaders. Despite falling on an already busy weekend and me running it for the first time I was very pleased. The mentors blew me away with their insight, discussion, and willingness to share their personal experiences. I’m looking forward to the upcoming year with this program.

My ability to be at this training without stressing over leaving my transportation-less guests home was made possible by Cory continuing to be the best human. He cleaned, made sure Michelle was caffeinated (super important), and picked up Stacey at the train station without complaint. What a gem, right?

Our weekend wrapped up with the Silent No More 5k to benefit Rhode Island women touched by ovarian cancer. To give you a little background on the name of the walk, one of the most grim nicknames of this disease is “the silent killer” because it’s symptoms (bloating, feeling full quickly, GI issues) can mirror a massive number of other, more minor, ailments. That said, many women are not diagnosed until later stages when the disease has spread from the ovary to other parts of the body. Being “silent no more” flips the script on that ugly nickname because as a small cancer community we are educating women on how to listen to their bodies and spreading the word. The more preventative we can be, the more women will thrive in the face of this disease.

Speaking of thriving, there were FORTY survivors at the walk this year. That is incredible. That means forty women that are either still kicking some OC keister or in remission. That is forty more women that are defying the odds, blowing up the statistics, and truly thriving.

It was nice to see familiar faces from previous years and exchange big hugs. The Rhode Island OC community is truly full of kind and remarkable people. I wouldn’t wish this disease on anyone, but I’m glad that it brought us together. (Shout out fellow cancer crusher, Dorinda for my new favorite bracelet!)

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I was lucky to round up a great team to come together as Notorious O.V.A.R.Y. (team name credit to Sarah Breen). Thank you Mom, Dad (Peepaw), Cory, Stacey, Michelle, Sarah, Zack, Kerri, Monica, Robin, Becca, Maddie, Joseph, Austen, and Ginger for waking up early, going full on teal, and braving the humidity for this cause. It meant the world to have you there.

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Congrats to Donna Ricci (President), John Morris (Vice President), and the rest of the RIOCA board members on another successful year. So many bear hugs, so little time! Jessie was most definitely proudly smiling down on you today through the sunshine.

Before I wrap up, I have a minor health update but it’s nothing exciting. One of the small incisions from the port placement wasn’t healing quite right and became infected so I completed one course of antibiotics. Unfortunately it still isn’t better so they have extended antibiotics for another two full weeks. So far they aren’t wreaking havoc on my life like the mega-antibiotics I had to take over the summer. On Friday, they drew blood cultures from my port just to rule out another infection in the port but they’re pretty sure that the infection is superficial.

CA-125 will be drawn this week, I see Dr. Robison for a check up on Thursday, “big” chemo on Friday. I’m not banking on a great CA-125 considering this infection business but here’s to hopin’.

Now that I have survived and chronicled such an eventful weekend, I’m going to plop down on the sofa, watch the Packers (hopefully) crush the Vikings (sorry Larz Barz), and restore my energy for work tomorrow.

 

 

 

Teal Month Begins with Silver Linings

On this the day of my daughter’s wedding Ovarian Cancer Awareness Month beginning, the universe did me a solid favor…

3 weeks ago at the beginning of my last cycle of chemo my CA 125 was pretty high- 1900 (generally “normal” is 21 or below. I haven’t been in the double digits in a good long time)

Today, Dr. Robison called me personally at work to deliver the news the my CA-125 tumor marker came back as 759.

I don’t think I’ve ever had such a dramatic drop within one cycle. There are so many factors that can influence this number: less inflammation in the body, no infections, chemo doing it’s damn job, nourishing my body with better food. So that said, no need for a CT scan right now and we will just stay the course with my current treatment plan.

I cannot scientifically prove this, but I want to believe that my tumor marker came down as a result of the love, laughter, and good times spent with my family last weekend on the Cape. It’s not often that my brother and his girlfriend are on the east coast so it was an extra special visit.

Oh and Cory and I went to a food truck festival on the Cape Cod fairgrounds and ate SO much incredible food- BBQ, Vietnamese, hipster grilled cheese, ice cream…

It wasn’t long ago that I sat behind my keyboard and drafted a blog post in tears considering that I may never eat normally again. This sounds dramatic, but a g-tube was a real possibility that most of the residents were in favor of at that time. Just weeks ago I didn’t have much reassurance that my body would “know what to do” and process solid food as it once had. In a short time I’ve gone from not eating to fearing food to re-teaching the body how to eat to enjoying the experience of dining.

You don’t truly realize how much the act of eating food factors into your day, your social experiences, and your mental health. Treasure every bite my friends.

Anyway, I’ll hop off my soapbox and let you in on some of last weekend’s good times.

 

As horrendous of a summer as it was, I can say that the past few weeks have totally salvaged it.

Lastly, I would like to take this opportunity to share the cherry on top of great news and welcome my baby cousin Vincent into this world. Vinnie- you will know nothing short of infinite love. Congratulations Sara and Ray!!

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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.

 

Port on the Starboard Side

Holy insomnia. I actually did sleep for a few hours last night but it was one of those sleeps where your dreams are so intense and bizarre that you don’t feel rested. Full disclosure- I don’t fully remember all of the details but it was some combination of being part of being a newly retired olympic gymnast and Big Brother contestant. Neither of which I’d be very good at in real life (can’t do flips, bad a comps, not competitive). Although it beats my Stranger Things inspired dream from the previous night that left me a little hesitant to find my way to the bathroom in the dark (note to self: string Christmas lights and befriend Eleven for protection).

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I’ve been awake from 3am-6am to embrace the weird/non sleep and get caught up on Big Brother.

Non-fans of any of these shows…just move on. Clearly the sleep deprivation is not conducive to a clear and concise actual treatment update.

Anyway, I’ll keep the rest semi-short and sweet.

Monday I had the new port placed. I was told it would likely go on the left side of my chest but they did an ultrasound beforehand and determined that despite scar tissue from the previous port they would still have no problem placing it where it was before on my right.

The port was placed under VIR (vascular and interventional radiology) at Rhode Island Hospital. It was the same place where the first port and PICC line were put in so I had an idea of what to expect. I was under conscious sedation so although I was awake sterile barriers prevented me from seeing what was happening and IV drugs prevented me from feeling it.

I will be honest, leading up to that day I wasn’t nervous or concerned but when I was in the waiting room after check in I had a mini-moment where I was feelning pretty overwhelmed. Cory was with me and talked me through it like the champ he is. I don’t even think it was the procedure itself that freaked me out, I just felt triggered by simply being there. Remember, my only experiences at RIH have involved getting ports placed or the ICU for septic shock. Not a great track record for fond memories.

The night after surgery I didn’t sleep at all. I was in a lot of pain and nothing seemed to take the edge off. I can best describe it like Conor McGregor slugging you in the collarbone as hard as he can. 513972668-conor-mcgregor-punches-nate-diaz-in-their-gettyimages

I returned to work the next day, which happened to be “moving day”. Our office was renovated over the summer so we were moving back in from our temporary space in the library. I couldn’t have been more useless on moving day. As always, I’m fortunate to have such compassionate co-workers. Shout out to Doug Hillis for moving my boxes for me. I was able to slowly but surely get unpacked and I am so thrilled with the new space. The office layout will be a little different to get acclimated to but my actual office looks phenomenal.

The pain has subsided over the past few days and luckily I can say it’s no longer sore. At chemo yesterday, Rosa removed the big bandage and revealed that it’s healing nicely. We were able to use the port with no issues for my Taxol infusion.

New Port…not Newport.

Final notes-

Thanks to Stacey for the chemo visit (I owe you a better hang out…Eskimo King stat). Double thanks to my parents for the post-chemo surprise visit yesterday!

Anyway, it’s a decent hour and I need to get ready for work.

Happy Friday!

The gift of momentary inner peace

Yesterday after chemo, I officially had no use for the PICC line and it was pulled from my arm. It didn’t hurt, actually, it felt like a long piece of wet spaghetti slide out from under my skin. Within seconds I was free. Free from the tubes, the daily saline and heparin flushes, the sickening smell of alcohol wipes. My arm could just be my arm and a shower no longer had to involve a sandwich bag and medical tape.

After work today I was fortunate to have one of those crystal moments of clarity where nothing serious mattered. There was no fear, no countdowns until something unpleasant ends, and thankfully no overwhelming nausea or exhaustion. I mean, all of those things exist steadily in my life, sure, but they were out of my head at least momentarily because yesterday’s PICC pull was symbolic. It was freedom.

With my new found “freedom”, I stopped home briefly, threw on a bathing suit and charged to the beach. The 80 plus degree weather at 6pm was certainly a gift as I was determined to get in the water. The waves were huge and crashed around me. The water was chilly but not biting, typical Atlantic in August. I eventually just sat down where the waves calmed and met the sand and let the water wash over me. I soaked in the smell of the ocean, let drifting seaweed cover my lap, and watched the searats sea gulls scavenge.

To put it not-so eloquently- I was happier than a pig in shit.

(This also resulted in about 3 lbs of sand in my bathing suit bottom when I got home soooo, souvenier?)

Now you may be asking yourselves, Jessica- why are you going to such great lengths to describe an incredibly average evening at the beach? Well friends, because I was denied a true summer. The powers that be filled this summer with hospitals and limitations. In short, more days than not were a total suckfest. I say this not necessarily to dwell on the nightmare that was but to highlight a single evening that brought pure, natural joy.

Tomorrow or the next day I’ll worry again. I’ll drag my feet to the hospital on Monday to add to the collection of scars for another port placement. I’ll begrudgingly sit through another chemo infusion on Thursday. I’ll take things for granted. I’ll continue to yell expletives through closed windows on the highway at oblivious fellow motorists… We’re only human right?

But for tonight tonight, I was cut a break. Nothing in the world stopped me digging my swollen ass feet into the sand, cracking the binding of a new book, and drowning out the world as the waves collided.

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Thank you universe for this taste of summer and utter peace.

 


I dig my toes into the sand. The ocean looks like a thousand diamonds strewn across a blue blanket. I lean against the wind, pretend that I am weightless and in this moment I am happy
-Incubus

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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Six Days Strong

Almost a week has passed since I was released from the hospital for the most recent bacterial infection. I can’t believe I even need to qualify that with “most recent” as if it is totally normal to go into septic shock then a few weeks later acquire two other infections. I don’t know if I should be terrified that this has happened on top of the other ailments or super impressed that despite it all I’m back home doing relatively well. In any case, I digress…

The point is, I’m home and all things considered I’ve had a pretty decent week. I was fortunate to not have to go home on continued antibiotics this time. I actually had a chance to slowly start to feel human at home without added intensive medications.

On Thursday it was back to chemotherapy. Prior to chemo I had a check up with Dr. Robison and it held some promise!

I had expressed that I was very ready to be finished with TPN. Due to the fats/lipids/dextrose in TPN, it isn’t hard to unknowingly create a little petrie dish in your port/PICC that bacteria thrives on. It just worries me to continue putting myself at risk for infection if we continue. I understand that TPN was necessary, especially given the issues I had with intestinal obstruction, but I’m at a point where my guts are improving and I’m ready to try to nourish myself the good old fashioned way…

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Now-

I was expecting my request to be met with some resistance since:

1.) I have easily lost 10 lbs since all of this nonsense began in May (at a point where I was already under weight)

2.) TPN provides nutrients that I cannot fully get by mouth while I work on slowly increasing calorie intake

Dr. Robison was in agreement that if I felt ready, tapering off of TPN would be our next move. That said, TPN has been reduced by 50% this week which means that I only need to infuse TPN every other day.

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I’m certainly not able to house over 1000 calories at this point (or anywhere close to that) but a small victory is that I have had a few small meals each day and without nausea or vomiting. This is a massive deal. In fact, I haven’t even needed to take nausea medication since Thursday when I had chemo. WIN.

Assuming the remainder of the week is equally successful, no TPN would mean no further need for the PICC line. That could potentially come out in the next week or two. That also means that a new port would be placed in my chest in the next 2-3 weeks.

Again, all of this is dependent on continued progress of eating by mouth and keeping it down. Let’s hope this vessel is up for the challenge.


On a final and unrelated note, many have asked me how I’m settling into my new home. It has been great! That is, when I’m actually home and not living at the hospital…

It’s a comfortable, cozy place to melt into when I’m feeling my worst and a cute beach community when I’m feeling human enough to venture out. One of those rare “feeling human” nights happened last night so we decided to capitalize on it with a beach picnic just minutes from our house.

 

Cheers to many more beach picnics, feeling like summer is actually happening, and for the love of all that is holy- STAYING OUT OF THE HOSPITAL.

 

The Waiting Game

I’ve decided that anytime a patient is admitted to the hospital for a bacterial infection, their room should be equipped with a speaker that plays the Jeopardy theme song on a loop. Why is that? Because your treatment and ability to go home is dependent on what is growing (or not growing) in the lab. Even when the bacteria presents itself in the sample, it can take a few days for it to develop into something identifiable.

As of right now we don’t know if the bacteria is the same as last time (which is probably the case) or a different type. Type dictates the kind of antibiotic and that dictates the plan for sending you home.

So for now I’m on antibiotics that have the greatest likelihood of knocking out what they suspect it is. My good friend vancomycin…ugh.

Yesterday was a rough one physically as I was a pukey miserable mess. My poor parents and I were downstairs in the lobby at Au Bon Pain (field trip!) when I knew my stomach was about to hit the reverse switch. Even with an injured rotator cuff my mom was quick to her feet and wheeled me toward the bathroom to this little alcove where I could vomit without a million eyes on me. If I actually had hair to hold back, I’m sure she would have done that too. Thanks Mom🙂 There was a lot of that yesterday and it took a great deal of energy out of me.

Later that day…

In an effort to be proactive I was rolled over to Rhode Island Hospital and my port was removed in the operating room. Typically ports can be taken out in a doctor’s office or hospital bedside but mine has been in there so long with so much tissue grown around it, Dr. Robison didn’t want to torture me.

While I was in the OR they also ultimately decided to put in the PICC line that we had discussed. Initially I was freaked out by the idea of a central line in my arm. Now that I have it, it really doesn’t bother me. I can’t feel it and I still have full use of my arm.

What makes it different from the port that I had is that we won’t have to keep “accessing it” or putting in a needle to use it. It’s a “double lumen” meaning there are two little catheters that hang down. They can be used to draw blood, administer medication, chemo, TPN, etc.

The procedure itself wasn’t terrible. I was awake for it but they gave me drugs so I wouldn’t feel it. They also utilized a cloth near my head to shield me from seeing the procedures. The worst of it was when they injected the site in my chest to numb it. After a huge involuntary yelp they gave me stronger pain medication and the rest was smooth sailing.

So here’s the PICC-

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It’s also covered by this stretchy sock thing so:

1.) I can tuck in the little catheters when they aren’t hooked up so they don’t catch on anything

2.) No one has to see it. I bet there are some cute PICC line covers out there. Hmmm…making a mental note to look on Etsy later.

Overall the PICC line is a good alternative to the port for now. The only downside is that a PICC line’s lifespan is not as long as a port so this is a short term solution. Eventually we plan to place a new port in my chest.

In other news, I’m in slightly better spirits today. My anger has started to subside into acceptance.

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I want nothing more than to feel good and be home but I know I just need to keep my mind busy, buckle down, and move with the process.

Before I sign off here to do another rousing round of sudoku, I want to thank everyone from the bottom of my heart for continuing to make this journey with me. I have been on the receiving end of immense kindness from people that I have met in all stages of my life (and even some people I haven’t met!). Your love and encouragement helps me to lift myself up and dust myself off during each of these set backs. Thanks again❤

 

I should just pay rent to the hospital

Tuesday was a gorgeous day. I was working from home in the backyard under the patio umbrella. As my creative juices were flowing in front of my lap top I got a chill. More than a chill really, it felt like winter inside of my body. I chalked it up to sitting in the shade and threw on a sweatshirt. Finally I couldn’t take it and moved into the warm embrace of the sun. I let it soak into the fibers of my sweatshirt like a little oven. Eventually I just went inside and piled myself under blankets. A couple hours later I felt feverish so I took my temp. YUP…104 temperature. CRAP.

I knew what my fate was. I would have no choice but to check into Hotel de Women and Infants pretty much kicking and screaming.

Cory drove and stayed with me in the emergency room. Around 11pm I was admitted and moved to a room on the oncology floor. Prior to that they did a chest x-ray and drew more blood cultures. The end result is that I have another/still have the same (?) blood infection. I am neutropenic at the moment which means that I am low on white blood cells that would normally fight against bacteria and infection. This is common in cancer patients undergoing chemo. Our immune systems are just shot.

That said, if you are sick or even suspect you have a cold- GET THE HELL AWAY FROM ME.

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This is currently on my hospital door with a box of super attractive bird flu masks

So I’m not going to dissect every  detail of my time here so far because it’s exhausting. Here are the cliff notes:

  • I will most definitely be here for a few days😦
  • My port just stopped working yesterday. Can’t flush it, can’t get a blood return. Nothing. That said I’ve had to have a couple peripheral lines put it (like normal IV’s) and that sucks a lot. I’ve had more needles jammed into me in the last 48 hours than I can count.
  • Since my port was infected previously my doctors are erring on the side of caution and having it removed. It will happen sometime today but we’re at the mercy of whenever Rhode Island Hospital can do it so until then I must fast.
  • They have two interventions to give me a boost and make me a little stronger. First it an injection to bump up my white blood cells. The other I am having as we speak and that is a blood transfusion. My hemoglobin was low so that should help too.
  • Again, no port = tubes hanging from each arm uncomfortably. I’ve never missed my port more. I’m not afraid of needles but I certainly do not enjoy getting stuck with them multiple times a day.

    With all this tubing hanging from my arms I’m tempted to recreate the fake party scene from Home Alone:

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  • No chemo this week so we can deal with the infection first
  • Once the infection is gone they will be putting in a temporary PICC line (Peripherally Inserted Central Catheter).  Eventually they will come out they will place a new port like the one I have now. Anyway, the PICC looks like this (photo cred: Happy Colon):

 

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So those are the facts, here are the feels:

My initial reaction was anger. I’m actually still pretty angry which isn’t my typical response to something like this. I have just had so many hurdles thrown my way in such  a short period of time, it’s exhausting. You are just always playing catch up to feel well. When will the day come that I can do that? If the last few months is any indicator it’s going to be an even longer road than I imagined.

I explained my frustration in these terms to a social worker on the floor. Most everything I do now has an asterisk next to it-

  • I can go back to work but I can only be physically there 4 days a week
  • I can take a shower but I have to spend 10 minutes taping a plastic bag over my port needle to keep it dry. (and DEFINITELY no swimming)
  • I can go to that barbecue but I can’t eat any of the food there

You get the point, everything is conditional- at least for right now.

I get complimented often on my positive attitude which I sincerely appreciate. It’s still in there somewhere! I’m just salty at the moment. For now I need to honor and acknowledge the pain/anger/frustration because those feelings are authentic and part of the process.

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Don’t worry George, it’s not the summer of Jess either.

Maybe there will be an autumn of Jess? Hope so.

 

 

Ups & downs of an antibiotic overkill

First of all happy almost Independence Day party people. I hope there is abundant BBQ, fireworks, and minimal fits of rage over finding parking in your near future.

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Okay, now that you’re all jacked up on the thought of pasta salad and 500 pictures of barely visible fireworks on Facebook- I should probably get the meat of this update.

Spoiler alert: it’s a long one…but there’s a bunch of pictures so that’s okay, right?

After returning home from visit #2938409234 to the hospital for my last blood infection I was feeling grateful to be in my own space (and still am) but the week proved to be more difficult than I had imagined. When I left the hospital I thought “oh give myself antibiotics for eight more days? That’s nothing!”

Ehhh…it wasn’t nothing.

The process of administering these drugs into my port was easy to do, but it tacked on couple extra minutes in the morning and at night. I guess it just became a little thorn in my side because the process of setting up and unhooking TPN infusions is more involved so adding anything else is just annoying. Especially so when it is imperative that you use a new alcohol swab for 30 seconds between every step in the process. BUT avoiding infection is paramount so it helps no one to cut corners when sterilizing.

(FUN FACT: To anyone that has to do TPN or home infusions themselves, a fun trick that I was taught to know that you’ve swabbed enough is to hum the jeopardy song twice.)

Over time, not only did I feel run down but the antibiotics wrecked havoc on me. I experienced tremendous muscle aches, especially in my lower back which made it nearly impossible to get comfortable anywhere, even in bed (this is actually a listed side effect of Daptomycin).

Nausea, ooph. Despite my best efforts to control it with Zofran and Phenergan, I experienced waves of nausea and would vomit about 1-3 times a day. I need not go into more detail about what it did to my tummy so we’ll just say “not pleasant” and leave it there. Unfortunately, it virtually wiped out most of the progress I had made with eating. I still try but I often can’t get more than two bites down before they decide to come back up. My doctor’s (hopeful) goal is to get me off of TPN in the next 3 weeks or so. I feel like I’m starting at square one with eating but I am determined to be able to eat enough calories to no longer have to rely on TPN for nutrition and weight gain.

Beyond the expected side effects my abdomen has felt quite distended which is never comfortable. I’d normally jump to being nervous about another obstruction but despite being distended my belly is soft, I’m passing gas, and have “good bowel sounds” (noise in all four quadrants). So that’s promising. I can only guess that being off of chemo for two weeks has perhaps created some fluid or something pressing against my organs. I don’t know I’m not a doctor.

All I know is that I can’t escape my own body and the discomfort and fear that comes with it. Ask anyone with cancer and they will tell you that anything in the body that feels “just off” without explanation brings about a tremendous amount of stress.

Everything considered, I’ve felt pretty down this week. I have; however, done a better job of reaching out to some friends, family, and Cory to talk and let it out. I have a tendency to sit stoically alone with my thoughts until they bubble over. I found a lot of comfort this week and that has definitely helped to pick me back up and dust me off. Even Dr. Robison and I had a life talk and cried together during my last visit. (SIDENOTE FOR ANYONE LOOKING FOR THE RIGHT ONCOLOGIST: Find a human being that treats you like a human being and asks about your emotional wellbeing unprovoked. It goes a LONG way)

Bottom line, when you don’t feel well it sucks. When you don’t feel well for 3 1/2 years it sucks a lot more and eventually you feel like you’re running out of steam. I know that there were will another upswing in my future but the last few months of hit after hit have really knocked me down.

Heaven knows I need to be in a strong headspace because chemo started again yesterday. A funfilled SIX hour infusion. Normally Carboplatin and Taxol wouldn’t take that long but because I’ve had platinum based chemo in the past “your body remembers” and there is a greater likelihood of having an allergic reaction. Because of that they dripped the Carbo alone over a three hour span. Poor Cory. We ended up missing his annual work pool party because we didn’t expect the infusion to last that long. As always, he was great and stayed with me without complaint.

The next two weeks of chemo will be a breeze in comparison. Just taxol so I should be in and out of there in about 2-2 1/2 hours. Cake.

I really don’t want to end on any more Debbie Downer notes. I think it’s important to be honest when things are not okay and recently, they haven’t been great. It’s also important to highlight the moments when you’re able to get your head above water briefly and fill your heart with something that takes you outside of the looming, intrusive, thoughts of cancer.

My situation can improve and below are glimmers of proof:

 

Things that were pretty awesome this week:

1.) Last minute free tickets to see Andrew McMahon in the Wilderness

I spent that entire day in bed that day so when I received a text saying we got on the guest list for my favorite band that night it took a giant pep-talk to myself to get out of bed and do something I know would fill my heart with joy. Granted, it was general admission and I had to lug the 10lb TPN bag on my back but despite being really tired I made it through and was SO happy I went. There is something so uplifting about Andrew’s music and the fact that he crowd surfed on a giant inflatable rubber ducky.

Oh and how fitting, he played ‘Swim’ the song he wrote about his own cancer struggle that simultaneously empowers me and makes me cry every time. Hence Cory, Sheila and I huddled together in the bottom right photo.

2.) Charlie Ruth!

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Auntie Jess got a visit from Katie and my little gummy bear. Hanging out with Katie is always the best but this is now amplified with squishy, sleepy, baby snuggles.

3.) Savoy Books

On a day I was feeling somewhat  okay (not clinging to the couch or porcelain throne at least) I ventured downtown to my new favorite happy place, Savoy Books. The store is two stories, floor to ceiling, of every genre imaginable. It has a small cafe and it’s warm, cozy, and just feels so welcoming. It’s a perfect place for when you’re not feeling well- quiet, air conditioned, and calm.

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I took my time there and read about 45 pages of the book I ultimately purchased: I’m just a person by Tig Notaro. Tig is a well known comedian and really gained notoriety when she got on stage for a set and announced in her opening line that she had cancer (mere days of learning of her diagnosis). The recording of that set went on to be grammy nominated.

I feel like Tig and I are living semi parallel lives (in some respects). She was plagued by a serious bacterial infection that almost killed her, diagnosed with cancer, and faced horribly tragedy all in the same year (2012). Sometimes I read her words and think, SHIT did I write that? Get out of my head Tig!

Here is a perfect depiction of the struggle of re-training your body to eat:

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Spot on Tig, spot on.

4.) Thunderstorms

I don’t have a picture but last night after an exhausting day Cory and I set up lawn chairs in our garage and decompressed while watching the pink lightning ignite the sky and take in the sounds of the rain and booming thunder as it neared closer. There is something oddly comforting to me about a thunderstorm so it was the perfect way to end our shit-sandwich of a day.

So that’s all for now. Updates will surely come and I hope that future posts will include more “I’m feeling good”, “I’m eating”, kind of stuff. For now, this is reality.

Chin up.