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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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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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 ❤

 

Tired & Wired

It’s possible that I’m still recovering from the excitement of the Izzy Gala and NOCC walk and that was almost two weeks ago. I don’t think my body has quite caught up. I have had another round of chemo since and feel perpetually tired and amped up all at the same time.

Sleeping well has been challenging for a combination of reasons. I lay in bed thinking about what I need to do that next day at work, what chores sit undone, what I’m going to eat, treatment schedules, how the new season of Empire will unfold, my hopes, my dreams, my goals… Over and over and over I have these rapid fire thoughts until I finally fall asleep. My weird dreams take over from this point. It’s as if there is a dreamland director saying: “Okay folks, I’ll take it from here. Okay Sam and Diane from Cheers, are you here? GOOD. I need you to make an unexplained appearance in the chemo unit while Jess panics to review a degree audit for a student before the Hamburglar enters the room to stuff Pad Thai in her socks.”

Okay, that’s totally made up but if you’ve ever had a stress dream you get the gist of how you feel when you wake up- totally and utterly unrested.I t’s not that I am even “stressed” in a negative sense, just rapidly thinking. On top of the endless thoughts, eternal acid reflux wakes me up roughly 3-4 times per night.

The reflux should subside soon because Dr. Robison agreed to switch me back to Omeprazole. If anyone reading this suffers from chronic heart burn listen up. YOU NEED THIS IN YOUR LIFE. Omeprazole is a medication that has been sent down from the heavens on a silver platter by actual angels. Your life will change and soon mine will too. If I’m going to have insane stress dreams, without reflux I’ll at least be more likely to ride out the madness until morning.

It is clear that I have quite a bit going on and need to work on quieting my mind before bed. I know what works for me: Hot shower/bath + chamomile tea + no electronics at least 30 minutes before bed + a  Sleep Sonic CD to drift off to = Slam dunk. The key is doing this every night. I’ve had my tea so far tonight so it’s a start.

Aside from regulating sleep and managing fatigue, things are actually pretty good right now. Actually, being the medical anomaly that I am, some odd things are happening to my benefit…

Despite lingering soreness, I am pretty sure that my fingernails have stopped lifting. There was a point over the summer where I couldn’t even scratch my head for fear of losing a nail. Despite the discoloration (they’ve turned blue/black/green/gross) they feel stronger. Why? No effing clue. Not questioning it. Additionally, my hair is growing back! All of it! Even the chunks that totally fell out earlier in the summer. I’m looking forward to growing out my locks again. Hopefully in a few weeks I’ll feel comfortable enough go sans hat to work!

Over dinner last night I told Sheila about these strange occurrences and half-jokingly asked her if they are swapping out Taxol with a placebo. That was answered with an emphatic “NO”. So again, I’ll just be happy that my hair and nails are pulling through and not ask questions.

Final report of the evening is my personal favorite!

At work I have the great fortune of interacting with college students every single day. Every one of them unique, passionate, and engaged in their own way. It is my greatest joy to see students develop as each semester passes. It’s nearly impossible not to feel connected to many of these young adults as their undergraduate advisor.

As of this week, I get to experience that connectedness in a different capacity (don’t worry I’m not changing jobs!). Bryant’s Colleges Against Cancer has approached me to co-advise their club with the magnificent Amanda McGrath. I couldn’t be more excited to use this crummy experience and channel that energy into a campus community that has served me so well through this difficult time.

I’ll chalk that up to another cancer silver lining 🙂

I hope everyone is having a wonderful week. I’m off to fend off some more stress dreams. G’night and continued gratitude.

TREAT YO’ SELF: Being your own advocate

I feel compelled to follow up on my last entry Questioning Quality of Life because today I received a phone call that put me at ease. Actually, being put at ease sounds too calm, I was elated.

As I had discussed in my previous entry I sent an email to my medical team in Boston and in so many far more polite and eloquent words said: I’m sick ALWAYS, this sucks, dose reduction or bust (mic drop).

The MGH team was quickly responsive and not only did they listen, they made it clear that they empathized with me. Tina, one of my biggest cheerleaders on the team, told me that it made no sense to push me through three more weeks of feeling atrocious everyday until the next appointment. They kindly granted me a three- week chemocation. You heard me. THREE WEEKS. 

The plan is to reconvene in Boston on April 7th, a week after my CT scan, and strategize moving forward. Either way, I’m being granted a dose reduction on one or both drugs.

This phone conversation was incredibly important for another reason. I, for the first time, revealed to her that I will be consulting with my oncologist in Providence to discuss alternative treatment plans as I am strongly considering leaving this trial and switching gears. It’s kind of like when you know you’re going to break up with someone and have talked to all of your friends about it but haven’t pulled the trigger because he’s SO nice. It’s nerve-wracking because you don’t want to ruffle feathers but you ultimately need to do what is best for you. (Cory this is NOT a subtle hint that we’re breaking up. You’re stuck with me.)

Again it was a big deal because this is the first time I have had the confidence to say this to the MGH folks. Don’t get me wrong, they are incredibly kind and supportive. They have my best interests at heart and no part of me thought that they bully me into staying with this treatment plan. That being said I half expected them to respond with some persuasive evidence to stick it out. Instead Tina’s response is what every patient wants and needs to hear from their healthcare provider: “your health and happiness is what is most important to us”. She expressed that it was a good idea to explore all possibilities. I left that conversation not just thinking but wholeheartedly knowing that my quality of life is just as important to them as it is to me. It’s not about the drug company, it’s not about money, it’s about patient well-being. Period.

Sometimes it is intimidating to question your doctors. I mean, they’re doctors right? I sure as hell didn’t go to medical school. But your intuition is powerful and important and should not be ignored. You can only “suck it up” so many times before your energy and spirit is depleted and you are left feeling utterly drained. If something is no longer right for you, it is perfectly acceptable to say: “Can we discuss alternatives?”. Frankly, the three week chemocation was just a bonus. What made me feel the best today was advocating for myself openly and honestly, and receiving feedback that validated my experience as a patient  person.

So what now? I am scheming all of the ways I can possibly maximize this three week chemocation. First priority, I am going to eat (and not throw up) SO many amazing foods.

Ultimately, the next three weeks will be very Parks and Rec inspired…