Chemo Fail

Dear Carboplatin,

It’s not you, it’s me. Actually it’s mostly you at this point. I mean, you’re a great chemo and all- don’t get me wrong. You don’t make me that sick. You only come around every three weeks so you’re not clingy. We’ve had some really mediocre times together. But alas we need to break up. We should see other chemo. I wish you the best but…

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Love always,

Your Platinum Reactive Ex


Ok glad we got that out of the way. I hope Carbo didn’t take the breakup too hard.

Yesterday I was treated in the main hospital oncology floor with the scheduled Taxol/Carboplatin desensitization chemo. Due to the allergic reaction that I had to Carbo a few weeks ago, we had decided to try it again under careful supervision and a painfully slow drip. All in all I was there for about nine hours.

To be honest I had slight reservations about being treated on the 4th floor of the main hospital. Inpatient oncology is where I essentially lived for most of the summer and my memories are not the most pleasant. I didn’t know if it would trigger me emotionally but luckily I did just fine. I’m guessing I was okay because I have positive connections with the nurses that I would be seeing. That went a long way. I mean, if anyone from WIH is reading this and knows Alicia, say no more. You can’t possibly frown with her around. She’s a damn good nurse, keeps it 100% with everyone, has a mouth like a truck driver, and a sense of humor to match. She wasn’t assigned to me but came by throughout the day to check in which I was grateful for.

I was happy to see that Lil’ Kim was assigned to me for the day. I knew immediately that I would be in good hands.

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So this is how a de-sense works…

Based on some crazy math formula that I made Kim explain to me in detail, that I now do not remember in the least, they figure out the quantity and rate of Carbo to administer over the course of six hours. It has something to do with your weight and I think the number 140 was in there somewhere….carry the 2? I don’t know. The extent of my math at work is making sure I can add up 122 credits and calculate GPA when needed. I’ll leave this one to the experts. In any case, how the chemo is administered is incredibly strategic as to slowly introduce the drug to your body in hopes that the smaller amounts at reduced rates will prevent a reaction. They also take your vital signs every 15 minutes.

Unfortunately going into my LAST bag of Carbo I reacted. Same as last time. I felt a little warm but other than that I felt fine. I turned blotchy and red all over my face, neck, chest, back, arms and hands.

This first picture^ was when I decided to see what I actually looked like because I didn’t know last time. It’s not the clearest of pictures but I’m pretty red (except for my cheeks for some reason? Reverse blush?)

Per protocol they immediately stopped the chemo, pushed Benadryl and gave me more steroids. This reversed the reaction and eventually I was back to my normal pasty-pale self.

I am fortunate that the reaction wasn’t terribly severe. Although,when they pushed the Benadryl I had a strange tickle in the back of my throat and momentary trouble breathing. It resolved itself within a minute or so but was a bit scary at the time. I don’t think this had to do with Carbo at all because it happened almost instantly when the Benadryl was pushed it. I’m guessing it was a response to how quickly the Benadryl entered my system.

Sheila got in contact with Dr. Robison and it was begrudgingly decided that we needed to be done with Carbo. I have heard the term “platinum resistant” before so I asked Betsy if that is what I was now due to this reaction. She kindly explained the following terminology to me that cleared things up:

Platinum Resistant = When the cancer is no longer responsive to platinum based chemo (such as Carbo).

Platinum Reactive =When the cancer IS responsive to platinum based chemo but your body rejects it. Hence, allergic reaction.

So I would fall into the latter category. It’s not that the chemo isn’t working, it’s just that my body is giving it a hard NO. We need to listen to what my body is telling me and move on to something different.

As of this moment I am not sure what the next steps are or how soon we will know what the next treatment plan will be. I’m guessing within the next 2-3 weeks we will have a better idea. I’ve been experiencing some shortness of breath lately so we have a chest x-ray planned for next week. I’m unsure if Dr. Robison will want a CT scan but again, we will know more soon.

So, despite having a long and disappointing day it ended on a side-splittingly hilarious note because Cory, Sheila, and I went to see the comedian Tig Notaro in Providence at the Columbus theatre. She had us laughing so hard the entire time- I was in tears. It was just what I needed.

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If you ever have the chance to catch her stand up, please do. Also- she’s a cancer survivor and her book is amazing so check that out as well if feel so inclined.

That’s all I have for now, but I’ll keep you posted as details about a new treatment plan unfold.

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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.

 

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!

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.

 

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).

 

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.

 

 

 

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!