Top 5 Tuesday: What’s in your bag?

For anyone that has seen and come to love the movie High Fidelity with John Cusack you would know that he would be proud of this addition to the blog since his character makes Top 5 lists throughout the film. Luckily I won’t be listing top 5 saddest break up songs or anything like that. This is a little more practical and cancer-esque.

Now I tend to shy away from dishing out “how to’s” because there is no instruction manual for cancer and everyone’s experience is uniquely theirs. But I can offer some nuggets that have come to help me personally over the years. If you find any of it useful, perfect! If not, find comfort that I still have a day job.

When you’re in chemo you have a lot of time on your hands and comfort isn’t always optimal. Here are my Top 5 must-haves packed for a chemo infusion.

1.) A designated chemo bag

This seems like a silly one but let’s face it, chemo brain is very real and without some level of consistency I will likely forget to bring something to treatment. I generally use one of those reusable cloth grocery bags. I’m glad they’re getting used somehow because I am the worst offender of owning them and forgetting to bring them with me to the grocery store. Sorry environment. I’m trying, really.

A reusable grocery bag or tote will be enough to fit a few necessities. Keep it in your car if you drive yourself to treatment or pre-packed in the same spot in your home.

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I think we can agree that I should upgrade from stop and shop bag to this gem. GASP. NEED.

2.) A soft/fuzzy blanket

As a blanket enthusiast I have many throws around my apartment but I have one specifically that I keep in my car so that I never forget to bring it with me to chemo. Why BYOB (Bring Your Own Blanket)?

  • Hospital blankets are generally glorified burlap tarps. They don’t provide much warmth beyond the first few minutes out of the blanket warmer and the material doesn’t make for a cozy experience.
  • Emotionally it’s nice to have one blanket specifically for chemo so I am not making that association when I am trying to relax at home. That blanket serves one purpose, my other blankets are my home blankets.
  • Sometimes one of the pre-drugs for chemo (depending on your treatment) is Benadryl. If you are anything like me you’re cross eyed within a few minutes and ready for a solid chemo nap. When I’m napping I am seeking optimal comfort, especially if I’m being infused for a few hours at a stretch.
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This is what I’m 99% sure I look like post-Benadryl

3.) Entertainment

Boy is this necessary. My first stab at chemo had me there for 8-9 hour infusions. Now it’s more like 2-4 hours. You have a lot of time on your hands here. In the chemo units I have experienced there are usually televisions and maybe a few magazines hanging around. I would suggest packing one or more of these items for variety.

  • A good book. I prefer something that is going to make me chuckle. If you haven’t read anything by fellow blogger Jenny Lawson do it. You will undoubtedly be THAT person belly laughing in the chemo unit.
  • Cell phone with good battery life
  • Tablet or iPad if you have one. Good for movie watching/Netflix binging if the cable options aren’t great or answering work email if you’re still working and a true overachiever (just don’t answer email post-Benadryl…trust me. It makes for some weird outcomes)
  • Favorite magazines or crossword puzzles. Nice touch for your chemo bag for the sake of anyone volunteering to come with you for support. If you’re a chemo napper like me, your friend/loved one is going to need entertainment as much as you.

*Ok, ok so I know I cheated with #3 and listed 4 different things in a Top 5 list. You can write angry letters to the editor if need be. Spoiler Alert: I am also the editor.*

4.) Phone charger/Ipad or tablet Charger

I mean, if you’re there for a few hours killing time with non-stop Facebook and Insta-creeping you’re going to need to charge up.

5.) Sweater/Sweatshirt

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Maybe have a little bit of chill and don’t pack this one…

I’ve found that comfort and layers are key. The particular chemo drugs that I get make me immediately freezing then I wake up sweating bullets shortly after. Having an extra sweater to keep in your bag can help to manage that. Also if you’re low on magnesium and they add that to your IV, it tends to make people run a little warm

 

So there you have it, my top chemo staples for maximum enjoyment  okay-ness?

I purposely did not include water/snacks/meals because in my experience the infusion center has graciously provided that in all three hospitals that I have been in. If yours does not it never hurts to have a bottle of water to stay hydrated and a granola bar or fruit to keep your tum tum happy.

 

Cancer friends- what are your top chemo necessities? I’d love to hear from you! Feel free to leave your favorites in the comments.

 

 

 

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!

 

 

 

Jello: A small & jiggly victory

It’s Tuesday and I’m still in the hospital but I’ve certainly turned a corner. Last night I graduated from IV fluids to clear liquid diet. For dinner and breakfast this morning I was able to have chicken broth, juice, jello and herbal tea. During morning rounds, an examination of my belly showed some positive bowel sounds and a softer abdomen. I then graduated to solid food for lunch. What’s that?! You heard right. SOLID food.

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I had a little turkey and tomato rice soup; so far it’s sitting pretty well. No nausea, no vomiting, no feeling like a monster has punched a hole in my gut and grabbed onto my intestines for dear life. One meal down. Let’s hope dinner stays on course.

There is no official word but I think that I could get discharged tomorrow if all goes well tonight. As much as I do secretly enjoy the adjustable hospital bed, I’ll be happy to return home to my own surroundings. I also adore my nurses and CNA’s but I definitely won’t miss 3am wake ups for vital signs and 5am blood draws.

I still do need to have chemo on Friday so as far as I have been told. The infusion schedule hasn’t changed so things will be business as usual soon enough.

One more tid-bit of positive news that I wasn’t expecting. In the midst of all of this mayhem, the CA-125 results came back from last week’s blood draw and it was 479!

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It dropped like 400 points(?)* since a month ago when it was still hanging out in the 800’s! Perhaps that steroid really did help to fight the inflammation in my body last week. I could use a small victory so I’ll surely take it.

*Hey medical professionals- riddle me this: in what unit is the CA-125 measured? “Points” doesn’t sound very official. Help. Love always, some one that should know the answer to this.

Home Sweet Hospital

I hate to even say this considering how high morale was following my last post but-

I’m back in the hospital. In fact, I’ve been here since Saturday. I felt absolutely fine on Friday, I was able to eat normally. Everything was just dandy and then boom, out of nowhere, uncooperative intestines.

Around 8:30am on Saturday as I drove home from my haircut I began to feel some abdominal discomfort. I figured I was just a little backed up and planned to put together the “let’s get movin'” cocktail of Miralax and Colace. My plan backfired as every attempt to drink fluids was met with violent vomiting shortly thereafter. My abdomen was rock hard and distended. Something was definitely not right.

My sweet Cory came to help me as I struggled to find comfort in my own skin. Finally, about twelve hours after the initial abdominal pain I called Sheila for advice and she confirmed my instinct to go to the emergency room.

The ER staff took me in quickly and made me more comfortable with an IV of fluids as well as Zofran and Dilaudid. After a physical examination of my protruding belly the ER doctor turned to me a most serious expression and said “This examination is very concerning. We’re going to send you for a CT scan”

What I didn’t know at the time is that everyone except for Cory and I suspected that I had a bowel perforation which would have been really bad and resulted in emergency surgery. Dr. Robison was on call and came right over ready to slice me open if need be. Of course, Sheila wasn’t working but left a party to join us in the ER because she’s just a good person.

We sent this picture to my Mom when breaking the news that I was in the hospital to ease her concerns. I look like death warmed over  but I’ll put aside vanity for the sake of how adorable Dr. Robison and Sheila are right here.

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Clearly this is post-pain medication. There wasn’t too much smiling going on before that.

The CT scan results returned and we all breathed a collective sigh of relief when it turned out to just be a bowel obstruction and not perforation. My relief was short lived when we discussed next steps: the dreaded NG tube.

I’ve written about having an NG tube before. For those not familiar with its function- the NG tube is inserted into your nose and shoved downward until it reaches your stomach. While it is being inserted they have you drink water out of a straw to help naturally guide the tube in place. Ultimately it feels like you are drowning and it’s the worst. The tube’s purpose is to allow the bowel to rest by sucking out fluid/gastric juice.

The ER doctor knows first hand what pure torture it is to both place and receive an NG tube so she was kind enough to give me what I now fondly refer to as “the holy trinity”: Phenergan (for nausea), Dilaudid (for pain), and Ativan( for anxiety). I remember all of the tube being inserted but nothing after it. I slept until the next morning with no memory of the multiple x-rays they did or moving to the 4th floor as an admitted patient.

I woke up the next morning, throat raw and irritated, and noticed that the end of the tube was clamped and not attached to anything? Confused I asked Cory what had happened. Double confused I asked him again because I forgot that I asked him the first time (thank you holy trinity). What a patient man…

It turns out that the tube was inserted properly but due to my hiatal hernia, it coiled up and did not stay in the stomach. Here is a visual to demonstrate how the hernia complicates things:

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The doctors later told me that I had fluid all the way up to my esophagus so it was still good that we inserted the NG tube because they were initially able to drain a lot out. Ultimately the NG tube was removed yesterday morning and we made a deal- if I didn’t throw up without the tube it could stay out. Luckily, I was able to do that and confirmed this morning during rounds that there will not be another NG tube going in.

Today marks day three in the hospital and we are slowly making progress. I am still NPO (no food or drink by mouth) but have graduated to a small amount of ice chips. They were considering clear liquids today but after listening to my belly, the bowel sounds were still too sluggish. Fingers crossed that tomorrow, maybe just maybe, I can have a few sips of apple juice.

It’s so strange how these things can happen out of the blue. One day I’m feeling 100% the next I’m in a hospital bed. So bizarre.

I want to thank my parents for driving three hours and staying overnight to make sure I was okay. They are currently cleaning my apartment because they are thoughtful and extraordinary human beings. Looking forward their visit later in the day.

I also want to thank another extraordinary human being, Cory. He jumped in his car and drove two hours to be with me without question. He was calm and reassuring even though it was probably scary for him too. The poor guy never left my side and slept in a chair at my bedside all night that first night. How did I get so lucky?

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Thinking positive thoughts for a speedy recovery so I can nom nom nom happily once again and get back to work!

Maximizing Chemocation

As I sip on a delicious Rhody from Vanuatu Coffee Roasters I soak in the last 40 minutes of normalcy before heading into a new chemo cycle. Today is the big one- Taxol and Avastin. I expect to be pretty beat this weekend but as always I am hoping for the best.

To quickly recap last week’s chemocation I REALLY packed it in. I joined Aaron, the Director of Advising, for the 2016 NACADA Region 1 Conference in Portland, Maine. It is always refreshing to see what other schools are up to, absorb new best practices, discuss issues in higher education, and to also see what we’re doing well. As my Instagram account reflected, Aaron and I were pretty damn gluttonous in Portland. You just can’t not be. Our highlight was certainly tasting the tomato fennel soup, poutine, and salted caramel milkshake from Duck Fat.

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Needless to say, my return home has resulted in compensating with a lot  of fruits and vegetables.

Just when I returned home I pretty much unpacked just to pack again. My handsome, intelligent, mancrush everyday- Cory Tysoe had a birthday! He has now reached the ripe age of 28 which means that I am officially no longer a cougar (until January when I turn 29). To celebrate we utilized a holiday present from my parents and headed to Vermont to Mt. Snow. Unfortunately the weather wasn’t totally cooperative so Cory didn’t get much time on the mountain before getting pelted by hail.

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We spent a good majority of our time testing our relationship through Farkle and Risk. Anyone who knows me knows that I am generally not at all competitive. Like for real I bowled a forty the other day. FORTY. And that was better than expected. That said, there are a few things for which I am fiercely competitive- Scrabble, Risk, and Farkle.

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I was happy to cozy up by the fireplace and toss some dice around while ruthlessly talking shit to each other although next year I may join the toddlers on the bunny hill and give skiing a shot. We’ll see…

So that brings us to St. Patrick’s day, yesterday. Sarah, my former coworker Krystal, and I threw a St. Patty’s party in the Izzy Room at Hasbro Children’s Hospital. We decked out the room in festive green, Bob and Timmy’s donated SIX pizzas, and we offered crafts and cookie decorating. Although the party only yielded three physical attendees I would still call it a success. There were several children that were too sick or not allowed to leave their rooms. What we ended up doing was essentially creating a “party on the go”. We delivered pizza and some craft supplies to a mother of an 11 month old in the PIC unit. We also packed up pizza, cookies, st. patty’s swag, and crafts for parents and nurses to bring back to the rooms of families that wanted to be at the party but couldn’t. In any case the Izzy Foundation was able to bring a little cheer to people going through tough time.

The three of us had a blast 🙂

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^ Mine is the one with the fuzzy eyebrows 

Last but not least, I met with Dr. Robison yesterday for the usual chemo exam. She was pleased with the outcome of using the steroid and gave me the green light to keep taking it in line with the chemo cycles if it is helping.

We won’t have an updated CA125 until later today or Monday so I’m not sure where that stands right now but she said that if it made a significant jump upward she would be inclined to scan me. If it is a small increase or lower/unchanged the plan is to scan this summer as we previously discussed.

Soooooo that’s all folks.

I hope everyone has a safe and happy weekend!

 

 

 

ROID RAGE! (or responsible use…either one)

Holy 180! Since I last wrote I feel like a totally different person. Mainly because I’m ‘roiding out right now.

Let’s be perfectly clear-

Not this kind of ‘roiding:

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More like starting a low-dose, short-term steroid treatment to curb concerns regarding fatigue/poor appetite/nausea/vomiting. Thanks to the brilliant Donna MacDonald, a case manager at WIH, we put into action a 10 day dose of Decadron (Dexamethasone). Decadron also helps to treat inflammation in the body which, if the CA-125 is any indication, I have a boat load of.

Sidenote: Doesn’t Decadron sound like the name of a fictional planet from some sort of Sci-Fi novel? It does to me. Oh well, I digress…

I am to take two pills in the morning for the first five days then will taper back to one pill in the morning for the remaining five days. So far the magic is working!

  • I haven’t thrown up once this weekend
  • My energy levels are unparalleled. I am usually clinging to life on Mondays, today I feel as if I slept 10 hours and drank a cup of coffee in comparison to the norm.
  • I’m hungry! The thought of food is enticing instead of stressful/nauseating. For lunch today I craved a balsamic-pesto-grilled chicken wrap and housed over half of it (which is substantial for my eating patterns of late).

It’s amazing what one simple change can make. It is really just a testament to the support at Women and Infant’s Hospital. Between Sheila (nurse navigator), Rosa (chemo infusion nurse), and Donna (case manager) they had three different reasonable recommendations to assist me in the nausea/vomiting/appetite issue. All three contacted my oncologist right away and have put plans into action. They’re the best. Seriously, people who are genuinely concerned and get shit done. Period.

I’m especially grateful for this help because yesterday was one of my best friend’s. Katie Carlson’s, baby shower. It meant the world to me to feel well enough to enjoy her special day. As you can imagine, it’s hard to stay present and soak in the special moments when you’re nauseated/throwing up/exhausted. I felt pretty optimal for most of yesterday and seeing this face (and belly) was perfect.

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Go team!

When distractions aren’t enough

Yikes, I have gone an entire month without tickling the ol’…plastics? Hm. I guess there isn’t a cutesy name for typing on a Macbook like there is playing a piano.

Whatever, I’m back. In my head I hadn’t updated because I thought that I was just coasting through the monotony of treatment with no real news. Pretty much every week consists of a blood draw to make sure my CBC (total blood count), followed by an infusion the next day, and 2-3 days of steadily increasing instances of nausea, vomiting, fatigue, and a poor appetite. I was; however, lucky that Valentine’s day weekend fell on a week off treatment between cycles so I was able to nom nom nom on every morsel of food I could get my hands on.

I have hired a professional actor to reenact how I’m pretty sure I looked during Cory and my romantic Valentine’s feast:

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Much to my disappointment, a ravenous approach to all things delicious has been the exception more than the rule lately. With every treatment it is a little harder to curb the nausea and general unpleasantness.

Tomorrow I am armed with two full scripts of Zofran and Phenergan to hopefully ensure a vomit-free weekend.

That’s really all I have for a general health “update”. Until I have another CT scan this summer (maybe June-ish?) I won’t know much more about how I am doing than I do right now. My CA-125 has been a pretty unreliable indicator of progress as of late. It’s still hanging out in the 800’s. I used to track it but I lost count. As long as the scan shows no new disease, we are happy. No new disease also opens the door to discuss tapering back treatment to only Avastin to see if I can maintain without the Taxol portion. It’s too early to really know so we’ll table that discussion for a few months from now.

Until then I’ll just keep my head down and do what I need to do.

Nope. I take that back. That’s what got me in trouble over the last month. Keeping my head down and trying to suck up frustration over physical ailments just lead to a month of feeling emotionally and physically depleted more often than usual.

So often I’m kneeling on the bathroom floor, grateful for the gentle fibers of the bathmat under my knees, retching over the toilet. I think to myself “WHY CAN’T I JUST EAT A GODDAMN MEAL WITHOUT DOING THIS?!” The next thought, just seconds later is not kind- “You have had it so much worse. Remember the hysterectomy? Remember IP chemo? I know you remember the clinical trial. This is nothing. You’re fine.”

Imagine if instead of that being my inner monologue, a friend said that to me. They would be a total asshole right? Why do we insist on being so cruel to ourselves in our most vulnerable moments?

As a result of this ongoing and dismissive mental-chatter, I was not recognizing the extent to which I grappling with the continued hurdles. What I was doing was throwing all of my energy into the students and projects at work, coming home, and binging on hours of mindless tv/movies. Numbing the discomfort with distractions.

Distractions can only get you so far. You can let your mind wander but it doesn’t forget that you have a case of the yucks (<– clearly a real medical term used often in clinical settings).

Earlier this week my Mom asked me how I was doing in just the right way for me to respond in a cracked voice and tears instead of the usual: “I’m alright”. Totally involuntary. I thought I was okay? Clearly my brain had some feelings to unload and my Mom is the best person to coach me through the yucks. An hour of crying and producive discussion about healthy emotional outlets later, I felt renewed.

After that phone call I dedicated the rest of the night to self-care. I headed straight to my sanctuary- Barnes and Noble and treated myself to two new books. Stories that could serve as healthier alternatives to hours of binge watching garbage tv. I can get lost in a book, but not for five straight hours. At some point I’ll have to put the book down and face nagging thoughts or feelings. I also bought a new, colorful, ornate looking notebook to pour those nagging thoughts and feelings into.

Later, I wandered into Panera, ordered a comforting bowl of soup, and freely wrote for about an hour. I opened the floodgates and painted a portrait of words to reflect every nagging “yuck” over the last month, or months…or years.  If my future grandchildren are to ever come across this journal they will quickly find out that sweet old Nana has a fondness for a certain “F” word not often found in this blog.

It is no coincidence that I slept more soundly on Monday evening than I have in months.

Chronic illness is a marathon. Until science catches up, there is no quick fix for ovarian cancer and the existing treatments though tolerable are not easy- especially over the span of few years without much reprieve. Self-care and kindness is essential to adapting to the ever evolving new-normals of living with disease.

I’m happy to have had Monday’s mini-breakdown turn into a breakthrough. It has energized me through the week and I am working hard to keep up the momentum. So that said I will keep my head up and be less dismissive of my own needs and emotions.

On a final note- this entry is timely as today marks the three year anniversary of The Cancer Chronicles!

Soooo if my blog was a child it would be able to speak sentences of 5-6 words, correctly names some colors, and dress itself. Way to go blog!