Monthly Archives: May 2015

Still Swimming

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Today marks the end of cycle #2.As fellow cancer crusher Andrew McMahon describes in one of my favorite songs, ‘Swim’, I’m happy to say that I’m still keeping my head above water.

As an aside, I’ve been thinking a lot about the music I gravitate toward depending on my mood- down or elated. Normally there is a vast difference between the two. Sometimes you just need emotionally dense music to extract the pain or fear that you’re experiencing. Other times if you’re feeling good you want to tap into the uplifting messages of the piece. The song ‘Swim’ by Jack’s Mannequin oddly satisfies both needs. The imagery of feeling lost in an ocean against a current is a perfect representation of helplessness and fear of not surviving the struggle. It also paints a portrait of pushing through adversity and clinging to hope that the challenge will be overcome.

I wrote a post a few months ago referencing this song. The post was pretty dark in comparison to this one as emotionally I was in a raw and vulnerable place. The trial was wearing on me and I was feeling consumed by this disease and the implications of treating it. I find it funny that I can turn around and reference the same piece of music to represent current feelings of control and optimism.

Hats & wigs off to you Andrew McMahon! I’m proud to say that I’m still swimming.

Now that my mushy music spiel is out of the way…

Thanks to Jacque for waking up at the crack of dawn (on her day off) to accompany me to my oncology check-up AND chemo. We’re clearly just pumped to be here:

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Surprisingly I still have my hair! I’m shedding like a golden retriever but the thinning isn’t noticeable to anyone else just yet. In fact, when Dr. Robison walked into the room today and the first thing she said was: “YOU HAVE HAIR!”

After much consideration I have decided to hit up my friends at the Ky Michaels Salon next week for a cut and color. I’ve gone back and forth with if it is worth it to invest in hair that is just going to fall out. Although the smart thing to do would be investing that money in my 401K or something sensible, I figure if it’s going to fall out let’s have it go out with a bang. I want to look good for my cousin’s wedding on June 5th. If my hair could just make it until then, this will basically be me every day:

My doc’s visit brought all good news:

  • Platelet count is good
  • Kidney function good
  • Blood pressure normal (Avastin tends elevate it, so this is something we keep an eye on)
  • Weight is up by another pound
  • No neuropathy in hands or feet
  • CA-125 as we recapped in the last entry is down by about 50%. We love this one!

Next week starts cycle #3 so on Wednesday I will have a blood test for an update CA-125. I’m exciting to see more progress.

Side effects are still minimal:

  • Fatigue
  • Little bumps on hands and arms that are occasionally itchy. Rosa said that this is common with Taxol and didn’t seem to be worried about it. She recommended putting sunscreen on them more frequently as heat/sun can irritate it even if you’re just driving.
  • Nose bleeds. They aren’t gushers or anything but I regularly get nosebleeds, mostly at night and in the morning (probably because the air in my apartment is dry). Oddly enough, the resident explained that the nosebleeds could be because my nose hair is also falling out. Weird right?

Overall I’m still pleased with this treatment choice. Always listen to your instincts.

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Have a great weekend friends 🙂

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Everyone Loves a Good Comeback Story

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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!

So far, so good

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Hello there friends, so we are 2/3 of the way through my first cycle of chemo. This week was even easier than last week’s infusion since it was roughly 2 hours shorter. Gone are the days of 9 hour infusions, THANK YOU LAWD.

This week I was infused with Taxol only. Taxol is the drug that I am receiving weekly. Taxol is the weekly chemo part of this dynamic duo while the other is an antibody received on the first day of every three week cycle. Last week I only felt crummy on Sunday and had some mild stomach “yuck” but aside from that I was generally okay. I do anticipate a cumulative effect where I may grow a bit more fatigued or worn out over time but so far, so good.

Yesterday’s infusion consisted of about 45 minutes of IV a pre-drugs: Zantac, Steroids, and my personal favorite- Benadryl. The steroids would explain why I feel like a million bucks the day after treatment. I wished the lasted a little longer, I could probably climb Kilimanjaro with the energy it gives me. Mom and Dad stayed with me until the Benadryl started to take me into nappy dreamland. They kindly used the next hour to go to my apartment and clean for me! What gems. I mean, how did I get so lucky? There is nothing like coming home to sparking floors and countertops especially when performed with such love. Thanks Mom and Dad! After an hour of Taxol we were all done. In and out in no time.

Today I woke up feeling pretty good. So far I’ve treated myself to breakfast at the Wayland Diner and stuffed my face with eggs, fruit, toast and turkey bacon. On that note I have been absolutely RAVENOUS in the past week or so. My appetite found its way home! The thought of food for the better part of the last year made me physically ill and eating it also made me physically ill…hence my current double digit weight. I’m still within my BMI but really cutting it close on the lower end. That being said I’m bulking for bikini season. No one needs to see skeletor at the beach. I’m sure that my nutritionist will be quite pleased to hear that I’m happily shoving all sorts of foods down my pie hole.

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When my doctor was researching treatment options for me she was very fixated on creating a much better quality of life than what I’ve had in the past. I honestly get a little choked up as I reflect on this because even though it’s only been a week I already see a vast difference in how I feel both physically and emotionally. This past year was plagued by constant illness and depression and this spring has opened a much more optimistic chapter. I finally feel like I have the ability to be well. For a while I became pretty jaded and lost the hope that I was capable of going into remission. I can’t fully explain why but I’ve restored my faith in this process. Even though it’s still a shitty thing to have to experience, it’s somehow better. I have high hopes that in a few months when we look at my next scan that we will see some progress.

I’m going to wrap this up with a couple shout outs:

Happy 30th birthday to the beautiful, talented, sassy, amazing, best nurse-navigator that ever lived- Sheila Enderby! I hope you enjoyed your party and amazing Prince cake.

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Happy birthday also goes out to a beautiful nugget that I have yet to meet- Karly Jae born yesterday to proud parents Joanna and Kyle. You are going to be amazing parents to this little girl! (If you need a break Uncle Cory, Uncle Sam, Auntie Alicia, Uncle Hudson and I will totally babysit and spoil the crap out of her)

Enjoy your weekends everyone!