Category Archives: Cancer Treatment

La Vida es Buena

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I have a lot to report on so you should probably grab a snack and a cocktail and get comfy.

So far 2016 has brought some great energy and experiences. I could probably ramble on for a few thousand words but you have lives to get back to so I’ll try to condense as much as possible.

 

Quick Thanks to Choose Hope Inc. for seeing Emily Nason sport their headband at the NOCC walk and reaching out to her. As a result of that they sent me a TON of merch and a beautiful handwritten card for encouragement. They are fantastic champions for cancer research and support so please check them out.

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Health Update:

Prior to departing for La República Dominicana, I received the BEST news that my CT scan was stable and one of the pelvic tumors had even reduced in size. It was like getting an elementary school report card with comments like “Your tumors have been very well behaved and much improved! Plays well with others.”

When I returned from vacation I had a routine check up with Dr. Robison. Much to my surprise she wanted to talk to me about next steps and potential treatment modification for the near future. So here is one possibility to consider:

-May-ish would mark the one year point of being on this treatment plan. She is going to scan me again around that time. If the scan is still stable (unchanged) or tumors are shrinking she is willing to let me make the decision to opt out of Taxol (the chemo part) and just do Avastin (the antibody) once every 3 weeks. That is an AMAZING prospect!

She is leaving this in my hands. We know Taxol works so if it would make me feel more secure to stay on it, that’s fine. From a quality of life perspective I’d be interested in testing the waters with just Avastin. If I become symptomatic again we can just throw me back on Taxol, no problem. She assured me that it would not impact Taxol’s ability to still work if I go off and on again if we needed to. Sounds pretty good to me! The next few months will be critical.

After this past scan I wasn’t even going to bother to ask about my CA-125 because I figured it would still be high. Sheila texted me today to let me know it went down from 785 to 723. What a pleasant surprise 🙂3478638

Vacation:

¡Ay dios mío! We had a REAL vacation! Cory and I spent the last week in Puerto Plata, Dominican Republic and it was 1000x better than I even imagined.

We initially hit a few snags. We had a flight from Providence to Newark that was delayed by several hours due to a mechanical issue. For that reason, we missed our connection in Newark to Puerto Plata and could not leave until the next day. After a lot of fighting with United Airlines (that had the most atrocious customer service) they begrudgingly sent us to Newark that day and put us up in the airport Ramada for the night with a couple food vouchers.

Thank GOODNESS I was with Cory who totally kept his cool because I was so frustrated with United I flew into a blind rage and had to walk away. To be clear, I have the true inability to “pop off” on others, especially people in service positions so “blind rage” translates to me hysterically crying and trying to pull it together crouched behind an ATM.

It wasn’t so much the disappointment about losing a day, it was truly the rude way in which we were spoken to and lack of problem solving on the part of United that drove me over the edge. The first woman we spoke to had an attiude that translated to “Well, not our fault. Go home.” Additionally, when I’m at the airport talking to United I should not have to CALL A CUSTOMER SERVICE NUMBER to resolve a problem only to be told that we shouldn’t be calling and need to talk to the ticket counter.

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On the flip side, Expedia’s customer service was unparalleled. I called while Cool-Calm-Collected-Cory dealt with United.

Expedia was totally apologetic and didn’t put the burden back on us. They not only called the resort for us but they also refunded us for the night we missed. They were unable to re-schedule our shuttle from the Puerto Plata airport to the resort so instead they gave us a $50 credit which was more then the value of the shuttle. After this experience I would 100% use Expedia again. Here’s to you Expedia-

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In a nutshell once we got there, the vacation was great. Our resort was small and had a nice community feel. We even made friends with a few of the other couples there. So I should thank Gabby, Alan, Nicole, Paul, Brian, Jen, Rob and Rachel for enhancing an already great experience (and being the best cheer section- explanation to come).

Highlights:

  • The fact that we asked of a king sized bed but were instead given two queens pushed together to form a MEGA BED! Sprawling commence! Cory hated it, I loved it.

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  • They also stocked the rooms with a gallon of water every day so people wouldn’t get sick from the tap water. Restaurants and bars also always had water from a jug, never from the tap.
  • Parasailing for the first time. How unreal! Incredible views of crystal clear ocean, mountains, and reefs. We were the only ones that went at that time so we had an extra long ride. I’d say we were in the air for at least 30 mins. I must do this again stat. I highly recommend the Seapro company for anyone visiting Playa Dorada in the near future.
  • Getting a $10 massage on the beach while I sipped on a piña colada and stared at the ocean.
  • Full day catamaran trip to two reefs in Sosúa for snorkling
    • Side note: It is the beginning of the whale migration! We not only spotted the first whale of the season but it came right up to our boat. It was like standing next to a school bus. Simply breathtaking.
    • Below are Cory and I soaking in the sun on the front netting of the catamaran on our return trip back to Playa Dorada:

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  • Sea kayaking (total redemption from my last attempt in Australia when Matty K and I capsized and nearly drowned)
  • Winning 2nd place and a bottle of rum in the Blue Bay Villas Doradas Ideal Couple Contest with Cory. Basically we were dragged on stage and had to do four “double dare” like challenges. It was a close race but we lost ever so slightly to a Slovenian couple. I thought we crushed it. I was also so happy to look into the audience and realize our new friends were all there cheering us on. Totally unlike Cory and I to do something like this but it was ridiculous and memorable for sure.

Yes, photos exist. Will I be posting them? Jury is still out on that one.

  • Our general routine of wake up, read a little and sip on a coffee by the spa pool, breakfast buffet (with our favorite waiter Rafael), beach time until 2 or 3ish, open air lunch, pool time/swim up bar/contests/activities around the pool until about 5:30, nap, dinner, show, bed. (So remind me again why we came home? Do advising positions exist in Puerto Plata? Surely they need a lighting salesman with all of those resorts. Hmm- Cory- let’s bone up on our Español and rethink our living arrangements…)

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  • The service as a whole- The Animación Crew (entertainment crew) was amazing. They constantly were hosting games, contests, dancing, and engaging all of the guests. Huge shout out to our boy Alfredo (the most enthusiastic dancer I’ve ever seen), Coca Cola, James Bond, Veronica, and Barbie. It felt nice that everyone from the entertainment crew to the servers to the bartenders got to know you personally.
Our boy Rafael
…and our not so secret handshake

Cory has at least 700 pictures/videos to sort through so unfortunately I don’t have many more to post right now but hopefully this will give you a little taste of the paradise we were so fortunate to experience over the past week.

I’m oozing with gratitude to be in a position to have this experience. I feel that my batteries are totally recharged, I am relaxed, and I am ready to take on the next few months.

¡Adios amigos y amigas!

 

Centering mind & body with family & pie

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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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Three Years

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About 20 days ago I posted a letter to myself in the form of ‘Dear Former Self’. It was an emotionally charged tribute to success in light of illness caught at a moment when I actually felt like I had my shit together. I meant every word of it and I am glad that ’20 days ago’ Jessica wrote it because ‘today Jessica’ really needed a reminder.

Today marks exactly three years since the diagnosis that re-charted my future. I can and do frame this anniversary as a celebration of life and thriving in spite of adversity. Honestly though, ‘today Jessica’ and ‘yesterday Jessica’, and ‘day before that Jessica’ are feeling pretty run down. Exacerbated by another week of chemo and an antibiotic in my system, I feel weak and worn out. My body aches, I’m exhausted, and my stomach is torn to shreds. Moreover, strong emotions float to the surface of my mind.

I left work a little early, curled up with my favorite blankets and watched a mind-numbing amount of Netflix. It turns out this was the best decision I could have made to honor myself today.

 

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(My friend Kerri emailed this to me at work today and it couldn’t have been more well timed)

If I try to pull myself up by my bootstraps any harder I’m going to put my entire foot through the sole. So today, I take the advice of my parents, Cory, my friends, co-workers (and all of the other highly perceptive people that have nudged me to be kinder to myself).

On this third anniversary I do three things:

1.) Re-read ‘Dear former self’ and pat myself on the back for making it this far in spite of crummy circumstances.

2.) Allow myself to be sad (for now). This disease has a thousand silver linings but actually replaying delivery of diagnosis in my mind is incredibly painful and can be difficult to ignore. If only I could use ‘chemo brain’ to selectively forget that moment.

3.) I rest. I shut off my work email, silence my phone, and just allow my body to be still and comfortable. It is working on overdrive to fight the disease and super-overdrive to keep up with the unfair demands I put on it constantly.

 

On a final note, I cannot thank everyone enough that has stood by me over a long three year period of highs and lows. Through the fear, successes, disappointment, and hopeful moments I have never once felt truly alone. I thank you for every pep talk, prayer, or kind “how are you holding up?” check in.

From the bottom of my heart,

Thank-you 

 

Chin Up, Spirits High

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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!

Contingency Plans

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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.