Monthly Archives: August 2016

All Things Hair

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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.

wig shopping

 

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.

 

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Port on the Starboard Side

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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

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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

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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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