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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Chemocationing & Making MOVES

There are three major things that I want to talk about: one piece of news is “eh”, the other is good, and the last is fantastical. Let’s dive in in that order and get pumped up.

 

1.) CA-125

My CA-125 was tested this week and made about a 300 unit jump to the mid 700’s. Not surprising considering the inflammation that likely exists in my body post bowel obstruction. Also my hands have been pretty swollen recently so that never helps the numbers either.

 

Overall I’m not concerned right now. I’m going to start taking the steroid Decadron regularly and see if that helps.

 

2.) Chemocation!

Since I have become “Mr. Balloon hands” we decided that a little break from chemo could be beneficial. I did receive Avastin as scheduled today but I didn’t have to get Taxol. I’ll also have the next two weeks off from it as well. Woo hoo!!!

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and the best for last…

3.) Roommate

I am the most thrilled to share that as of June 1st Cory and I are going to be roommates! (He hates it when I call him that)

Let me rephrase- we are going to be venturing into a new and exciting chapter of our relationship as we just deposited on a house for rent in Pawcatuck, CT. I couldn’t be happier. The house is everything we wanted and more, it’s just 2 minutes down the road from downtown Westerly, 15 minutes from Misquamicut beach, and our landlord is incredibly kind and down to earth. The house is also a commutable distance to both of our jobs so aside from a longer drive, no job sacrifices had to be made.

Finding this house this week was especially timely because it is also our two year anniversary. I am grateful every single day for Sam Favata introducing us at that beer fest. I had no idea on that day I would find one of the greatest support systems on the planet. Remember- I was already very much cancer-fied when Cory met me and he still signed up for this wild journey in spite of it. We have faced a lot as a couple in dealing with this illness and the relationship hasn’t wavered.

I look forward to building a home life together which includes but is not limited to: Back yard BBQ’s, Cory cooking amazing food, eating said amazing food,  aggressively competitive board game nights and a lot more Nerf wars (I think we’re actually children).

 

That’s all for now! I’m always happy when I can share some positive updates. I hope everyone has a delightful weekend 🙂

 

 

Centering mind & body with family & pie

I hope that everyone enjoyed their Thanksgiving holiday! Hopefully you did not have to rush off to work just yet (sorry Jacque! Retail is a buzz kill).

Thanksgiving this year was different than usual. Because I was scheduled to receive chemo the day after Thanksgiving, it would just be too much for me to drive back to Torrington and home again in 24 hours. Despite the gracious offer to join my cousins, my parents and I had a modified low-key Thanksgiving together on the Cape. We had a phenomenal four course traditional meal at the Daniel Webster Inn. Afterward, my mom and I whipped up a delicious apple pie and a loaf of banana bread using the secret family recipe. I have yet to eat banana bread that rivals my mother’s so it was nice to share this piece of our family history with her.

We ended the night with a marathon of Rummikub. To keep things interesting, I forced my parents to adopt silly rules and claimed them to be “new house rules”. This involved making by parents flap their arms like birds and yell “caw-caw, caw-caw!” whenever they had two tiles remaining.

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I adore my family and do not get to see them often as we are a bit spread out in a few states. As much as I would have liked to share this holiday with my extended family I think it was in my best interest to have a quiet break from life for a couple days in Mashpee. I was able to decompress and recenter myself. I can honestly say I feel much better than when I last wrote.

As I mentioned, today began yet another new cycle of chemo. I received both Taxol and Avastin. I am thrilled that W&I was able to fit me for an early afternoon infusion so that I did not have to rush back from the Cape early in the morning.

**Bonus** There was a therapy dog today! So many kisses and snuggles were had by all!

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Today I receive the updated CA-125. The numbers came back as just over 600, meaning it has doubled since the last reading. Considering the infection that I’ve been fending off, stress, and feeling rundown I am not at all surprised that my numbers shot up. That said, I’m not upset either (and no, this isn’t one of those times where I’m putting on a brave face but secretly sad on the inside. I’m very legitimately okay with this). I chalk this one up to a ‘not-great reading’ and hope that my body is in better condition for the next one.

In the interest of remaining focused on a more positive frame of mind, I want to share a gift from one of my students:

(I appreciate Kim providing me written consent to share her name as well as this gift with you.)

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Relay for Life 2015- Nelly (left), Kim (center), Me (right)

The context surrounding this gift is that before Kim became my advisee, we had crossed paths through Relay for Life and the Izzy Foundation. We bonded over our common experience of being young with cancer and that evolved into her joining my caseload in Advising. She is a stellar student and has a big heart for those around her. I can happily say that she is now cancer-free.

Through Kim, I met another wonderful girl named Nelly. Nelly was a patient at Hasbro with Kim and they became the best of friends under horrible circumstances. Nelly had been fighting Ewing Sarcoma but her suffering came to an end last weekend when she earned her angel wings.

Kim was the first to share the news with me and all weekend I worried about her. When someone close to you passes it is quite obviously devastating. When someone close to you passes of a disease you can relate to there are complex levels of emotion- fear, anger, mourning, survivor’s guilt, etc. It can be hard for some to process.

On Monday afternoon I returned from lunch to find a purple gift bag on my office chair. It contained a card and the framed picture above. Kim had written on every square inch of this card. It then dawned on me that while I was worried all weekend about her, she was also concerned for me.

Below is an excerpt from her card. It helped me to find perspective and I think it can speak to all of us on some level:

“I made this frame myself. There are many flaws and even some scratches, but they represent scars. When I first made this frame, it gave me issues, so I re-did part of it. I didn’t start new because I felt as though the scars (scratches) tell a story, just as all of our do. I kept it like this to show how perfection isn’t everything. Our lives are far from perfect, but we still manage to survive and get through every day.”

I think we can agree that my student is wise beyond her years. There are no accidents in life and this card arrived at a moment when I needed an influx of reminders that it’s okay not feel strong all the time. Beauty still exists within our imperfect worlds.

I consider myself so lucky to work with students with such heart. When people say to me: “I don’t know how you work through all of this!” I wish I could let them be flies on the wall for these kinds of moments packed with such genuine human connectedness.

So in short (HA! Right…) I feel that I am slowly returning to a more centered frame of mind. I am not currently feeling the stress and sadness that lingered over the past few days and I am getting excited for the weeks to come both in and out of work.

Cheers friends, have a happy and safe weekend!

ENJOY ALL OF THOSE LEFTOVER TREATS!

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Drop it Low

I’m going to be perfectly honest.  I have hit a wall today where I am beyond exhausted. I’ve spend the majority of the day sleeping during and after chemo. SO I’m going to keep this short and sweet:

CA-125 decreased from 455 to 337 !!!!!!

Chin Up, Spirits High

The “busy season” in advising is both exciting and draining leaving me pretty pooped by the end of the week. Today at chemo I will typically fall asleep through most of it once the Benadryl hits my veins. This time I totally passed out BEFORE the pharmacy even approved my blood work. Legitimately I arrived, got situated, Rosa accessed my port and hooked me up to saline while we waited for the green light from pharmacy to let us proceed with pre-drugs/chemo and I was totally out.

It’s just as well since the cable at he hospital has switched up their programming from Law and Order SVU to Law and Order Criminal Intent on not one, but TWO channels. I might need to write an angry letter. Scratch that, write a kind letter and play the cancer card. If there is a time to use the c-card, this is it!

It’s okay detective Tutuola, I’ll forgive.

Anyway, the infusion went fine and I just slept and slept. I actually slept so much I forgot to ask Rosa what my new CA-125 results were!

When I got home I crawled into bed and texted the ever reliable Sheila: “I was such a sleepy head today I didn’t even ask Rosa about my blood work. What’s the verdict dude?” I dropped my phone onto the bed next to me, buried my head in pillows and blankets and proceeded to pass out for another hour.

I awoke to about 14 missed texts, mainly from an excitable Sheila Enderby.

It turns out that my CA-125 has DECREASED from 742 to 455!!!

I haven’t had a CA-125 this low in well over a year and half or more. In fact I never had a CA-125 below 995 through the duration of the MEK inhibitor clinical trial at Mass General.

Here is a nice little recap, thank you Roger Williams for the 8 am required “Intro to Excel” course that made this half-assed graph possible:

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I have had so many days where I have had doubts and concerns. Perhaps in the future I will pursue a revolutionary new treatment that could obliterate the existing cancer but for now I am so pleased to see some REAL progress. Numbers that may reflect moving in a more positive direction.

I am so grateful to start off this next cycle with a bang. If you work at Women and Infants hospital and reading this- be forewarned that you’re going to be getting mega hugs (Heather- I already told Sheila that you get TWO, just ’cause).

Also- this is kind of an after thought but for my friends undergoing Taxol treatment PLEASE listen to your nutritionist and take L-Glutamine 3x per day. I started to feel some neuropathy come on (loss of feeling in hands/feet/fingers/toes) and since starting Glutamine I can already feel the impact! If this is a healthy choice for your body and approved by your doctor/nutritionist please go for it.

Anyway, that is all I have got for today.

Have a great weekend everyone!

A Glimmer of Progress

I walked into my blood draw this morning, told Leah (the phlebotomist) to cross her fingers for improvement, went to work, and carried on with my day. On the heels of a steadily rising CA-125, I wasn’t expecting miracles. I had mentally prepared myself for the possibility that the CA-125 could increase again, warrant a CT scan, and we would just have to go from there.

As I mentioned in my last post, I was feeling at peace knowing that we have multiple contingency plans in place should the number continue to climb. I can say that since then, I’ve had a truly great week. Although nothing was certain, I had a stronger feeling of security moving forward. I cannot quite articulate why this week was different but I just felt like I was in a better place. I was able to have a fun filled weekend with friends and Cory. I generally felt focused and on point at work. Despite the never ending fatigue I felt a renewed energy that was certainly more mental than physical. I grocery shopped and prepared healthy meals full of fruits and veggies for the week. I did laundry and really cleaned the apartment (dish mountain was conquered…finally). I was even able to get a couple small work outs in.

It’s not perfect, I was at peace with what is.

Going into the blood test I had high hopes but was not totally fixated on the outcome.

Well guess what?

MY CA-125 DECREASED BY 35!!!!!!! It’s a small improvement but it’s something. I would have been amped for a 5 point decrease at this rate. I haven’t seen a decrease in weeks. Maybe it’s a fluke but for today and the next three weeks, it feels like progress.

So with that I leave you with all the feels…

Contingency Plans

Little by little I am starting to get a sense of where this treatment plan is going. Baby steps.

I saw my oncologist, Dr. Robison, early this morning before chemo. I had approached this check-up with no expectations. Quite frankly I just assumed it would be a quickie visit: Listen to lungs, feel my belly, take notes on the extent of the side effects, girl talk for a bit, then send me on my way. I was partly right but we did have a productive conversation about future treatment.

In more recent previous posts I had talked a little bit about the frustration I was feeling over not feeling like I was progressing. There is no finish line, no end date, no goal to strive for other than keeping my chin up and staying the course. After my visit with Dr. Robison I left feeling relieved and at ease with what may come even though it is still very uncertain.

I am generally a planner. I like to have an idea of what is to come. With that in mind, I am also fairly adaptable and as long as some sort of plan is in place I can roll with that plan being altered. Bottom line, I do not want to feel stuck or stagnant.

We spoke openly about what tricks she may have up her sleeve for me in the event that the Taxol/Avastin combination is no longer best the course of treatment. In a nutshell this is a tentative plan of attack:

Scenario #1: We take a CA-125 bloodtest next week and the results show a decrease

  • Stay the course with Taxol/Avastin.

Scenario #2: We take a CA-125 blood test next week and the results are unchanged/slightly increase (ex: by 20 or so)

  • Still stable, stay the course with Taxol/Avastin.

Scenario #3: We take a CA-125 blood test next week and the results increase by about 50 or more –> Conduct a CT scan to get a visual on what is actually happening. Is the disease unchanged or progressive?

  • If we do a CT scan and the imaging shows that the tumors are unchanged and there is no new progressive disease we would be inclined to still stay the course with Taxol/Avastin as stable (no new growth = good)
  • If we do a CT scan and the imaging shows progressive disease (new tumors/growth) we may move to a different type of chemotherapy called Doxil.

So what is Doxil you ask?

Doxil is a platinum based chemotherapy called an anthracycline used commonly in recurring low grade ovarian cancer. The American Cancer Society was kind enough to explain this online in plain English for me. This just means that the drug targets enzymes involved in the replication of DNA. Its job is to destroy the cancer cells formed by the botched DNA. Like Taxol, it is not exactly a targeted therapy so it can also destroy normal tissue. One of the benefits of this drug is that it stays in your system a little longer because it is designed to go almost undetected by the immune system. This allows the drug more time to do its job. Or so I read…I am no means an expert on this drug aside from a basic google search.

Based on what I have been told by Dr. Robison and Rosa, my nurse, Doxil is also pretty tolerable. The most common side effects are skin rash (tinging/burning/flaking of the skin on palms of hands and bottoms of feet) and mouth sores. These side effects worry me because I have had variations of both in the past and it is not pleasant. BUT there are always risks with any medication.

IF we decided that a switch to Doxil would be the next step, and it may not need to be, the infusions would only last about an hour once per month. The only other downside is that I would need to be the most patient patient. I was told that they do not typically see any immediate impact on the tumor marker for the first few cycles. It would be another exercise in trust.

The other option that I inquired about is immunotherapy since it is being discussed at length in health media as of late. There is an immunotherapy trial going on at WIH currently but Dr. Robison did not feel that this particular trial is my best next step just yet. She is not ruling it out for the future if it is appropriate for my circumstances down the line.

A lot of information to take in, right? Remember, the plan may not even change! I am just relieved to know what my options are and how I can mentally/physically prepare for what is to come. I really appreciate that my doctor is always one step ahead of me, keeps me informed, doesn’t dismiss my concerns, and is honest with me. That is so important in a doctor/patient relationship.

After the appointment I headed over to the infusion center to see my girl Rosa for Taxol. One of my cancer crushing buddies was kind enough to come by with a HALF DOZEN Allie’s Donuts. If you are from the Rhode Island area- you know what I’m talking about. It’s sugar crack amazing heaven in a box.

Thank you for the visit and treats Jocelyne!

All in all I am feeling ready to move forward no matter what is to come. I find comfort in knowing I have options. Stay tuned for my create your own cancer adventure as we will know more next week.

Summertime Treatment & Sad Farewells

I hope that everyone had a safe and lively 4th of July weekend. From what I have gathered from social media, sun was soaked in, food was consumed, fireworks were constant, and everyone’s dogs lost their shit. I have spent the past few days on the Cape with my parents, other people’s parents, and in some cases other’s grandparents. Needless to say it has been pretty quiet and relaxing which is just what I need right now after a trying few weeks.

I am disappointed to share that I made the tough decision to rehome Josie. Although I anticipated the challenges of dog parenthood, there are several factors that contributed to it being an overwhelming experience (none of which had to do with her personality, she was great). This is a decision that I did not take lightly, especially because we really bonded. Perhaps under different circumstances I would have been able to manage better but I have to be authentic here and be honest that this was too much. I need to both take care of myself and do right by Josie. She was with a wonderful foster family over the weekend and they were kind enough to send me pictures of her happily romping around with their other dogs the very next day. I have also heard from her new adoptive parents and they are lovely. Josie took to them right away when she met them. Bottom line, I am happy that Josie is loved and safe even if it was not in my home.

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I’ll be a puppy mama again someday but not just yet…

After leaving Josie it was good timing for a small vacation to stay with my parents on the Cape. We had a great time relaxing, reading, coloring (yup, adult coloring books), live jazz/blues and catching up with family friends. We enjoyed panoramic views of fireworks on the beach in Sandwich on the 4th. We also gorged ourselves with delicious BBQ and seafood. We celebrated part one of mama’s birthday last night with great dinner and our favorite, Pirate’s Cove (never too old). All in all I feel much more refreshed and ready to return to work tomorrow.

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How cute are they?! ^

Treatment:

Due to the holiday, the infusion center was closed on Friday so chemo was pushed up one day. I was expecting it to be insanely busy to compensate for the closure but luckily I was still able to get in on time AND somehow get a room with a bed. I was honestly expecting a folding chair in the lobby. I think someone must be bribing the infusion center staff to ensure these accommodations for me because I cannot fathom how lucky I have gotten to have a private room with a bed for every infusion except for one. Nothing is better than being able to shut off the light, snuggle up, and pass out while you pump your veins fulla’ poison.

Side effects:

Fatigue is at an all time high for this treatment. It is really catching up with me as my energy levels aren’t quite bouncing back as quickly as weeks prior. The treatment of Avastin and Taxol really packs more of a punch when it comes to draining energy and I found it tough to get out of bed post infusion last week. I think I came home and slept for at least 3 more hours. I can still function but I’m increasingly sluggish at the moment.

Hand rash has pretty much turned the back of my hands into dinosaur skin. I hope it doesn’t look and feel like this permanently because it’s not pretty. I’ve been using a lot of Aveno, Lubriderm, and prescription hydrocortisone cream to soothe the itch and inflammation and to keep the skin moisturized. This rash is highly sensitive to the sun so no daytime beach trips on the Cape for this girl (don’t worry I’ve subbed that for sunset visits on the beach instead).

Sore fingertips are still a thing, a real complaint. I trimmed my nails down yesterday which has taken some of the pressure off but it is becoming increasingly challenging to perform certain functions such as fastening buttons and clasps or opening containers. My nails are becoming more brittle and I have noticed that the nailbeds are changing in color to a dark red/purple. Some are worse than others. I relieve the inflammation by running my finger tips under cold water. I’m not sure what else I can do besides that and keeping them clean (to avoid bacteria and infection). My mom encouraged me to look into homeopathic remedies but I haven’t hammered down anything yet. Luckily my nails haven’t lifted yet so fingers crossed they don’t and at worst stay sore.

Hair loss– Yep, still balding. Holding on tight. Headbands and wraps are helping to hide the top a bit for now. I honestly don’t know what I want to do yet. Shave and be done with it or ride it out and see what happens? A significant amount of hair has fallen out of the top but at a much slower rate than before making this decision interesting. The jury is still out.

The news you have been waiting for:

My CA-125 results are in, actually I’ve had them for quite a few days, I’ve just been on radio silence on the blog front.

The CA-125 blood test showed a drop from 1184 to 812! We’re in triple digits! As I always say there is still a long way to go but at least we are seeing progress. This is very encouraging for me indeed.

On that note, I hope that everyone is enjoying their summer thus far. Stay tuned for more test results and summer adventures (does binge watching Seinfeld on Hulu count?)

Everyone Loves a Good Comeback Story

Week 4-5 of treatment has brought about some excitement. I’m riding the wave of what I would call an upswing.

If you just want a quick “how is chemo going?” you can scroll down to item #4 the bottom. I have a feeling that this one might be a novel but too many great moments went down:

1.) Bryant University’s Class of 2015 Commencement:

The week leading up to commencement is interesting, calm and mildly nerve wracking all at the same time. We clear our calendars and take no appointments (except emergencies). Our front desk staff diligently works with Academic Records as grades pour in to print degree audits for every single senior. Us, the advisors, pick our favorite Pandora stations and hunker down in our offices reviewing every degree audit line by line to ensure all degree components are met. Every ‘T’ crossed and every ‘I’ dotted. Normally I keep my Pandora pretty vanilla for office purposes, Indie-Singer Songwriter perhaps, but not this time. Oh no- to get through this week I needed coffee and some serious hip hop jams. Childish Gambino and Atmosphere amongst others put me in the zone, seniors got certified, no mistakes (that I know of) were found, and I could go home relieved.

The real excitement took place on commencement day. I knew it would be a proud day to see these students that have evolved personally and academically. What I didn’t anticipate was crying about seven goddamn times! One of my advisees, Emily, was the first to open the floodgates by handing me a gift before she lined up for the procession:

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There is a backstory to this but in a nutshell Emily has been telling me for two straight years that on her graduation day she would give me me a bouquet of flowers made of her statistics homework because the course gave her (and subsequently me) so much grief. She delivered on that promise and I LOST IT. Emily is just one of many students that day for whom I was sad to see go.

To put it in perspective for the purposes of this blog, I’ve known this particular class of students for as long as I have been sick. Through surgeries, hospitalizations, and physically/mentally taxing treatment plans I have balanced holding it together to serve this student population to the best of my ability. One must question occasionally, am I still able to do this job well in the midst of ongoing life challenges? (My director is probably banging his head against his desk reading this because he assures me, almost daily, that I am doing good work.) But for the students who may or may not know what is going on in regard to my health, it is beyond reassuring to have moments like this where you know that against all odds you made a meaningful impact in the job that you do, sick or otherwise. This gesture held many dimensions of meaning for me personally and professionally.

2.) Sara’s Bachelorette Party:

After a box of Kleenex and a beautiful commencement ceremony I headed over to Foxwoods Casino for my cousin’s bachelorette party! One of the highlights of my weekend. We had a super hilarious group of girls and despite not feeling my best around 11pm I was still able to hang for a good portion of the night before heading back to the hotel early.

Here she is, the beautiful bride to be:

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As you may know I have a VERY small family so Sara is one of my few cousins and she means the world to me. It seems like yesterday that we were chasing eachother around my grandparent’s basement at Hanukkah parties as my brother taunted her for her admirable aspirations of someday operating a school bus (spoiler alert: she became a teacher sooo…close enough). Now as an adult, Sara is still the same amazing person with a gigantic heart of gold. It is truly an honor to share these moments and to celebrate one of the most supportive and loving people in my life.

Any and all other details of the bachelorette party remain at Foxwoods, sorry folks.

3.) Prevention Magazine:

Recently, a childhood friend approached me about writing a story about what it is like to be on a clinical trial that she would pitch to Prevention. The talented Kristen Domonell did a wonderful job! She certainly maintained the integrity of my personal story and provided a balanced viewpoint. It is an “as told to” style so it was written by Kristen but told from my perspective. You can check it out here: http://www.prevention.com/health/cancer-clinical-trial

Having this published made me pretty giddy. Storytelling creates community and understanding! I hope by putting this story out there at least one other reader could relate.

4.) Chemo Update:

I just finished my first full cycle and started a 2nd last Friday. Just as I have been reporting, I am tolerating this treatment well. I’m still gorging myself with food and sleeping well. The only minor side effects that I’m noticing are occasional nosebleeds (result of Avastin) and I’m finding more hair in my brush and sink than before. The hair loss isn’t remotely noticeable to anyone else just yet but it’s definitely starting.

This past infusion I was accompanied by the lovely, witty, Stacey Goldman! We were fortunate (again) to get a private room with a bed AND a recliner. As a result, Stack and I spent our time there watching bad daytime tv and taking nappies.

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We did tack on an extra hour to treatment because my port was for lack of a scientific term, “gunked up”. The heparin flush went through but my nurse couldn’t get a blood return so they had to give me tPA (Tissue Plasminogen Activator). Think of my port as a clogged sink and tPA as the ‘Drano’ equivalent and there you have it. Once the tPA did its job we were able to get a blood return and get back to business.

While we were there we received a positive update from the infamous Sheila, nurse navigator. I have weekly blood tests and she was excited to share with me the results of the CA-125 tumor marker. So excited in fact, she texted my results followed by: “I told Rosa to tell you what your tumor marker was but I’m just so excited about it I’m texting you now…She’s going to tell you so act surprised!”

My CA-125 is currently 2190. Which if you recall from other entries about the CA-125 is not actually good at all. A safe or preferred CA-125 is generally under 21 (or 35 depending on the hospital). Obviously, mine is a skosh higher than 21. What makes this news exciting is that when I started this treatment 3 weeks prior to the blood test, it was over 4000. This means in a single cycle my tumor marker has reduced by about 50%. HOLY SHIT. Something is working. I hope I don’t eat my words later but honestly, I just have strong positive feelings about this.

Naturally, to celebrate Stack and I indulged in the first Eskimo King visit of the year. Lavender soft serve in a waffle cone with rainbow sprinkles. I’m pretty sure in the midst of getting it all over my face and clothes like a child, it also seeped into my soul and made it smile.

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Cheers to continued improved health, happiness, and well-being!

Slice me open! Let’s do this.

I’m a bit behind on sharing with you all but my parents and I met with Dr. Robison last Friday to discuss moving forward. Decisions have finally been made!

1.) Despite my CA125 being in the 40’s she decided on no more chemo! The chemo served its purpose but the cells do not turn over quick enough to still be effective. At this point the chemo would do more harm than good. As much as I really liked hanging out with Sheila every other week, I will not miss the giant needles plunging into my chest and abdomen. I definitely won’t miss getting pumped full of liters of chemo drugs and saline and sloshing around with a swollen belly until I urinate 600 times in 24 hours to get it out.

This  also means that my abdominal port is coming out tomorrow! Another thing that I will not miss is feeling the end of the catheter moving around and poking me when I’m doing core work at the gym. I detest my chest port but at least the catheter doesn’t move around. That port will stay in for another year. They don’t want to be too quick to take that one out just in case anything happens. As I’ve mentioned before, it’s more functional because it has a blood return. They can take blood, inject contrast for a cat scan, give me fluids and IV drugs, etc. etc.

2.) My aftercare plan will be a drug called Letrozole. Letrozole is an aromatase inhibitor. This basically means that it blocks the production of estrogen in post-menopausal women. My doctor and her team strongly feel that my cancer was stimulated by hormones. Dr. Robison consulted with some of the best GYN/Onc’s in the country and they all agreed that this is the best course of action. So I was promptly taken off my bio-identical hormone replacements (because I don’t want to be giving myself estrogen/progesterone/testosterone if hormones are the root of the problem). I started my once daily 2.5 mg of Letrozole last weekend and so far so good. The only side effects that I have noticed are intensified menopausal symptoms like hot flashes. July and August aren’t going to bode well for me because I roast daily. I even keep an emergency stick of deodorant in my purse now just in case I start sweating profusely for no reason (real cute).

Other than the crazy hot flashes, I’ve felt great. The only other concern about this drug is that it impacts bone density. I just need to stay on a serious and consistent calcium/magnesium/vitamin D/weight bearing exercise regime.

3.) Until further notice I will have a check-up with my oncologist once a month. She will do a blood test monthly to monitor my CA 125 and HE 4 levels but she said that she will only tell me my blood test results every other month. She doesn’t want me to get too fixated on the numbers which I appreciate. If there is a huge jump and my numbers double or triple, she most certainly wouldn’t hide that information. If it fluctuates a little here and there but remains “stable” it should be of little concern as long as my CT scan is clear. I’m pretty sure that I’ll be having another CT scan in 6 months or  possibly sooner.

My parents and I left her office feeling really encouraged. We told Dr. Robison that she’s not allowed to retire…ever. She is honestly the best. Now that we could all take a big collective sigh of relief, we headed back to Connecticut for mother’s day weekend. We had a great weekend together!:

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I even got to spend a night with my she-wolf Michelle:

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And have a nice, wholesome, impromptu whiskey tasting over dinner with my parents and cousins (sorry liver):

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So right now things are pretty good. Work is great, I’m not totally terrified of my own body at the moment, I’m spending lots of quality time with friends and family, and I’m totally killing it at the gym (I did  a set of 15 perfect “boy” pushups yesterday. I’ve pretty much shouted it from the rooftops because I couldn’t even do that BEFORE I had cancer).

As always, so grateful. Thank-you.