Tag Archives: cancer

Summertime Treatment & Sad Farewells

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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?)

Chemo & a Canine

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My life has taken an interesting turn in the past week. Last week, I wrote about adopting little (big) four-legged furball named Josie. The past week together has been exciting, heart warming, and challenging all at the same time. Josie is a very special pup and I can see why the foster coordinator at Big Fluffy Dog Rescue and her foster mom were so enamoured with her. josiegirl

She looks deeply into your eyes (and possibly into your soul) with such love and purity it is hard not to melt looking at that face. She had such a tough life leading up to being brought into Big Fluffy, I am shocked that this sweet girl can still love and trust so deeply.

Truth be told there have been a few times over the past week where I felt a little overwhelmed/stressed but generally her transition has been good.

Funny story about a particularly challenging evening:

Cory was concerned that she would drag me down the street on walks due to her size in comparison to my size (she weighs about 45 lbs. and I am clocking in at about 100 these days. THAT’S right! I finally tipped the scale!) I can handle a 45 lb. dog but when she is pulling and lunging at small dogs, cats, bikes, and squirrels, it takes some manpower to keep her in check. So on a night where she was particularly overstimulated, I figured I would try and burn off some energy by jogging with her on our last outing of the night. Imagine us in the streets of Providence off of Broadway. We’re running at a pretty decent pace, and I think to myself, “I’m totally going to tucker this girl out, I’m a geni-HOLY SHIT!” Suddenly, I hear a large German Shepherd bark behind a chain link fence to our left and Josie comes to an immediate dead stop. In that moment I run full force into my goddamn dog, trip over her, and land flat on the pavement, hard. It turns out that my demise ended up being my stationary dog acting like a speed bump.

On the bright side, Cory was wrong about this particular concern…

Yes, yes I am. Sorry your honor.

Anyway, this mishap aside, Josie has been pretty great even when I’m at work for the day. I mean, if you left me with a cozy bed and AC all day I’d be pretty psyched too.

There are dog mama perks aside from all of the awesome puppy snuggles and kisses I get everyday. In taking care of Josie it has forced me to be more purposeful with my time and provide better care for both of us. Now I’m not saying every cancer patient should run out and get a dog. Trust me, just a few months ago I was NOT in a place where I was up to this. I will say though, she has nudged me to make some positive changes in my daily routine. Not only do I take lots of walks, but I soak in my neighborhood and the people in it. I wake up earlier, plan mealtime better, and thoroughly clean everyday (she sheds like a fur monster. Thank goodness she doesn’t go on the bed and couch).

This routine has oddly given me energy even though I’m putting in more “work”. I think that these factors can only aid my recovery. Plus that unconditional love and care is just plain good for morale.

Now onto the chemo nitty-gritty.

I am going into my fourth cycle of Taxol/Avastin. Friday of this week will be the longer day where I get both drugs. It has been generally tolerable but I am seeing some annoying side effects start to creep in more and more:

  • Hair loss- No surprise here. I would have thought that I would have shaved by now but the back of my head is still full, it’s just the front that is mega thin. With some strategic combing and headband placement I have been able to dodge the razor for the time being.
  • Dulled taste buds- I am not experiencing the metallic taste that some other patients describe but food last lost it’s luster. I can taste food but everything is much more bland. I find myself gravitating toward stronger flavors and spices than before so I can really enjoy what I’m eating. My appetite is great though!
  • Hand rash- I have a rash on my hands that itches like crazy constantly. Any other cancer crushers out there experiencing this from Taxol? Use, Hydrocortisone cream and cool compresses. It helps although nothing but tapering off the Taxol will make it go away.
  • Sore fingernails- I’m not even kidding. This is actually a thing. My nail beds feel constantly inflamed. After all this time you’d think I would stop googling my medical concerns. All I found were horror stories about people’s nails falling off during/after cancer treatment. So help me I will STAPLE my nails to my fingers if I have to. (Not to worry, my nails are intact). I’ll just deal with it.

This list of complaints in comparison to my list of complaints from previous treatments is nothing. This is living the good life! I’ll take sore finger nails and bland food any day over a daily ride on the puke train.

I can safely say that I’m pretty happy right now. Things will only keep getting better, I’m sure of it.

We are keeping the positive energy going as I get my weekly blood work done tomorrow. It’s a CA-125 week so I’ll be getting an update on my tumor marker Friday.

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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!

Cycle #1- Donezo

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Oh hey there friends! As of this past Friday I have completed my first full cycle of the new treatment. Each full cycle is three weeks of treatment: Week #1: Avastin & Taxol (3-4 hour infusion) Week #2: Taxol Only (2 … Continue reading →

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!

Infused with love…and antibodies…and chemo (but mostly love)

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Holy moly I am feeling the love! Usually I end my entries with the appreciation I have for those cheering me on. I still receive daily messages from family, friends and supporters from all over the globe. It is that encouragement that helps me to continue this fight. Thank you for your unconditional kindness.

The love fest continued yesterday at the Women and Infants infusion center. It was like coming home.

I was lucky to be joined by the ever handsome and supportive Cory Tysoe. He came up to Rhodey the night before and we enjoyed taco Thursday (doesn’t sound as good as Taco Tuesday) followed up by a documentary inspired by this YouTube sensation: Winnebago Man (aka “The Angriest Man on Earth”)

The documentary was essentially a result of Netflix Roulette. A little offbeat but worth a watch if you want to see the impact of becoming a viral internet sensation.

As you can see the evening before new chemo wasn’t tense or worrisome. We just went about out night, a rare midweek dinner date at home, and I adored it.

The next morning while I pulled myself together (put on sweatpants) Cory made breakfast because he’s a stud. After breakfast we packed up my infusion supplies (phone chargers, a cozy blanket, books, etc.) and made the 1.9 mile journey to W&I. ONE POINT NINE MILES. Beats the hell out of the 2 hour commute to and from Boston.

My former chemo nurse Sheila is now my nurse navigator and straight hooked me up at the infusion center. She got me a room with a BED! I only had that once in my previous IV infusion experience. It is a rare treat, especially when you’re receiving Benadryl pre-drugs (right Jen?).

My new chemo nurse was at a conference so Sheila set me up with “boss lady” Heather (Sheila’s words, not mine). “Boss lady” has been in women’s oncology for over 17 years and she was amazing! When she accessed my port I barely felt it and her bedside manner was unparalleled. She had a sunny disposition and made sure that Cory and I were comfortable. I am a major fan of her. I’m also a fan of the fact that her and Sheila are working on assigning Rosa as my regular chemo nurse. Rosa treated me previously as well as my friend Jen. I adore her and I’m happy to be seeing her again.

I’ve talked about this a lot in my blog before but I have to stress what a strong sense of community WIH has. Everyone remembers you from the front desk to the phlebotomist to the nutritionist to nurses you didn’t even have! All of the aforementioned people popped in my room to say hello. They weren’t pleased that I had to come back but I did feel the warm welcome. I think that it gave Cory some peace of mind to see me surrounded by such loving and positive people.

I’m painting a rosey picture here but the reality is that no one looks forward to chemo infusions. What I can speak honestly about is that I look forward to the warmth felt in this particular infusion center. It turns a crappy situation into an experience not quite as bad.

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Even though Sheila works in the main building now, she stopped by in the afternoon to say hello. I was deep into my Benadryl nap and I felt someone jump on top of me. In true Sheila fashion she climbed into bed to give me a big hug and say hello. This would only be weird if it wasn’t her.

Overall the infusion went well. We were only there for about 4 hours (in comparison to my previous 8-10 hour stints). I was also told that I will be there for even less time in future infusions, maybe 2 hours max? Honestly, once the Benadryl hit my veins it was all over. I fell fast asleep and only woke up periodically when the IV pump beeped to switch over to the next drug. Poor Cory sat in the dark room for hours answering work emails while I passed out.

When it was all over I was famished and had an undeniable craving for Harry’s Burger bar. So Harry’s it was! I housed two sliders and some fries then immediately went home and took another 4 hour nap. I woke up around 8pm to my darling washing dishes and tidying up the kitchen. Seriously where did I find this man?! (Thank you for being born Sam Favata, without last year’s birthday celebration I would be Cory-less). Cory made me a cup of tea and we cozied up on the couch and watched hours of Top Gear. Another perfect evening at home.

Aside from feeling tired I generally felt well after the infusion. It wasn’t until almost midnight when I went to lay down and was overcome with nausea. Unfortunately I threw up. I don’t believe it was a result of the chemo though, it was probably gorging myself with burgers and fries then topping that off with some Ensure plus. Too much for my little tum tum.

Today I feel perfectly normal so I’ll say that new chemo thus far is a success! Let’s hope that it’s killing tumors so I can really call it a success in a few months.

Next week I will be joined by my lovely parents so they can see first hand how well I’m being cared for 🙂 In the meantime I return to normal life. Today I’m popping by the Izzy Room at Hasbro Children’s Hospital to see my dear friend Sarah pull off the greatest disney party of all time for the little patients and their families. Tomorrow I have the honor and pleasure of attending my cousin’s bridal shower and visiting with family in Connecticut. Monday- back to work.

I want to thank everyone again from the bottom of my heart for the love and support. Every drop of it is internalized and greatly needed.

Fight on.

All systems go: A new treatment plan in motion

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What a day, nay- what a week.

At work we are in the midst of the course registration frenzy. During this time there are a lot of time sensitive concerns, a high volume of varying needs, and general stress. On top of that all I can think about all week is:

1.) I need to stop hacking a lung or I might turn myself inside out.

2.) What treatment plan will provide for me the best quality of life

3.) Pizza (because pizza is usually at the forefront of my mind).

My supervisors and colleagues have been very sensitive to my recent and ongoing challenges and stepped up in a huge way to ensure that I could rest my body and ease my mind. I didn’t realize just how necessary it was to just decompress until I got home, got into bed, and felt all my insides just ache.

STILL Fixing a Broken Squeaker:

Today was a big day. First of all, the coughing has gotten out of hand and although I had some relief after the thoracentesis, I underwent a second this morning. After performing an ultrasound on both lungs they determined that the left side was STILL worse than the right side and they again drained from the left side.

No Farva, that’s not Liter-Cola, it’s another full liter of my tumor juice.

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Sheila, my now fancy nurse-navigator, was a doll and went with me to observe the procedure and wiped the tears from my eyes and goopy nose while I periodically whimpered. The PA that performed the procedure was VERY good and although it was still a difficult procedure to endure, it wasn’t as traumatizing as the first time.

There is still some fluid boppin’ around in there but I can certainly breathe even better now. Slowly, we’re making progress. I just pray to the good heavens above that I don’t have to have this procedure done again anytime soon. Two in one week is enough torture.

The Treatment Plan:

Prior to draining the pleural effusion from my chest, I met with Dr. Robison to carefully weigh out all of the treatment options we have in front us. After great consideration, we agreed that we would try pairing Avastin (an antibody) and Taxol (a commonly used chemotherapy that I’ve had previously). There is research to suggest that Avastin in combination with Taxol yields more promising results than Avastin alone. The decision to start with a chemo-combination as opposed to Avastin on its own was also heavily influenced by the amount of fluid that has been collecting in my chest. The Taxol should do a good job of drying that up. Eventually we will be able to taper off the chemo and only use Avastin. I do not have a timeline for this.

The up-sides:

  • Will provide good quality of life
  • Minimal side effects
  • I DON’T have to take it at home (it will be an outpatient infusion)
  • Treatment will occur at Women and Infant’s in Providence (less than a mile from my apartment)
  • I already know that I tolerate Taxol well

Moderate-Bummers:

  • At least for the first few months I will need infusions once per week (still not as bad as the first time)
  • I may lose my hair again. But even so- I know I have a nice round head and in the grand scheme of things feeling well trumps having hair.

With all of that being said we are wasting no time! My first treatment begins next Friday and I plan to be there with the ever handsome and delightful Cory Tysoe. Little does he know that he will just have to just watch me pass the eff out once they toss some Benedryl in the IV (Benedryl naps for life!). Cory- you should probably bring a book…

So in short, it’s been a BIG week of mixed experiences and emotions but I’m still full of fire and will do everything I can to claim my life as my own and NOT cancer’s chew toy.

Mom, Dad, Adam, Cory, family, and friends (I’d be typing names for decades, sorry). Thank you for always having my back, always believing in my ability to be well, and helping me to navigate and endure the ups and downs of this disease.

So much gratitude…

Jess

TREAT YO’ SELF: Being your own advocate

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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…

Guts (but not the Aggro Crag kind)

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To start off, if you grew up in the early 90’s you may enjoy the beautiful ‘Guts’ reference in the above title. If you do not fall into that category, the ‘Aggro Crag’ was the coveted trophy awarded to the 1st place winner of the Nickelodeon show ‘Guts’. BEHOLD:

If you think this post is about that beautiful, green, glowing piece of greatness, it’s not. It’s about actual guts, my guts. Sorry…

I’ll understand if you decide to stop reading here.

For those of you that don’t care about 90’s pop culture references, let’s carry on shall we?

Today I visited my gastroenterologist, Dr. Fayek. Since before the bowel obstruction there has been talk of me having a colonoscopy due to thickening of the colon seen on January’s CT scan. My doctors are unsure as to what this means but the Boston doctors would like me to have the colonoscopy as a precaution as it has been seen that the study drug can cause colitis (inflammation of the colon).

It has been a few weeks since I was discharged from the hospital for the bowel obstruction so the consult was for Dr. Fayek to examine me and see if I was in good shape to follow through with the colonoscopy. After feeling my abdomen she said that she still felt some distention and was very concerned about performing a colonoscopy.

In the event that my guts are still jacked up and she were to perform a colonoscopy it could be dangerous. The result could be possibly triggering another bowel obstruction or perforation (which is super scary and could lead to surgery/infection/extreme unpleasantness). In order to perform a colonoscopy your doctor pumps air into your colon in order for the camera to get a comprehensive view (fun right? you suckers should have stopped reading when I told you to).

The colonoscopy is scheduled for Friday, March 13th at Women and Infants but we will have another consult before that to determine if it is safe or not. Dr. Fayek consulted with Dr. Robison and they both tend to agree that it may not be the best time for this kind of procedure.

I am appreciative that Dr. Fayek is erring on the side of caution and being very conservative when weighing the cost/benefit of this procedure. Ever since the FIRST surgery in December 2012, my intestines have never been quite right. Who would have thought that cutting them in half and sewing them back together would make them angry? Is there such a thing as colon-karma? Hmm…

As details unfold about the fate of this procedure, I shall let you know.

In other news…

1.) I’ve been back on the trial for a couple weeks now. It still makes me feel crummy and I still hate it. I am due for a CT scan in April and will weigh out my options at that time. For now I’m working on incorporating some more holistic/healthy practices into my life, abstaining from alcohol (wahhh wine, I still love you), eating VERY well thanks to the generosity of many, and sweating it out in hot yoga/beasting it weight training with Matt. All of this helps, I just need to keep the momentum going to maintain healthy behaviors.

2.) I’ve been receiving a boat-load of extra help lately. Thank you for everyone that has signed up/cooked a meal for me through the CaringBridge page or sent a donation through Young & Brave or otherwise 🙂 Between my cousins alone, I think I have enough individually portioned, healthy, tasty freezer meals to last me another month! (Sara and Teri, you seriously need to quit your jobs and go into business!).

Additionally, I have received many thoughtful gifts, cards, and treats that melt my heart. These acts of kindness resonate with me deeply.

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THANK-YOU!

Love & gratitude 🙂

Snow & Chemo

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To all of my friends in the New England- I hope that you are surviving the insane amount of snow that has come our way. On behalf of us all, I have taken it upon myself to send Punxsutawney Phil a strongly worded letter in regard to this “6 more weeks of winter” bullshit.

I am sitting at home on our 4th snow day in two weeks. I’m a bit torn as I really could use the extra rest and down time but at the same time it is hard to get back into a routine when I haven’t yet had a full week of work since before my last hospitalization. I guess I’ll just stick with not complaining since my landlord takes care of snow removal and I am left to binge watch Crimes of the Century and drink tea all day under my heated blanket. (To anyone working in Academic Affairs just accept that the add/drop period will never end. Ever, ever.)

Despite last week’s snowfall, I miraculously made it to Boston. I had every intention of writing my update last Tuesday after my appointment but in light of the MBTA basically imploding upon itself, my blog post would have been less about my health and more of a giant rant about public transit riddled with a generous amount of profanity and “f-bombs”. Seriously, anyone that tried to take a commuter rail, T, bus, or cab in the city of Boston last Tuesday must share my pain. How they managed to pull off a PARADE the next day when they couldn’t even get commuters to their jobs/lives the day before is beyond my comprehension. By the time I got to my appointments I’m almost certain my blood pressure was roughly one million over a thousand. (END MINI-RANT)

Per usual I was in Boston from morning until late afternoon playing the waiting game. In that time period I had two appointments: 1.) Ophthalmologist 2.) Medical Oncology. Stacey Applesauce Goldman was kind enough to join me in the waiting game and even sit in a dark exam room while I napped on the exam table.

Eye Doc: Good news! The last time I was there, three weeks ago, I was told that there was a trace amount of fluid starting to collect behind my retinas. This is of concern if ignored but can easily correct itself if one goes off drug. Apparently the three weeks spent on a chemocation did the trick and no fluid was detected. (I still want that seeing eye dog. Maybe I can make an argument for a therapy dog instead?)

Yes this one will do quite nicely, right Blythe family?

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  •  Oncology: This appointment was mostly just to get me back on chemo and to bring the doctors up to speed with the partial bowel obstruction experience.
    • Obstruction Recap– They determined that the bowel obstruction was unrelated to the study drug and left it at that. I tend to agree as I do have a history of sad guts prior to this trial. I mean, my intestines were cut in half and sewn back together only two years ago, that doesn’t just go back to normal overnight. My guts are cranky. So moving forward the plan for these cranky guts is to meet with the gastroenterologist again and plan for a full colonoscopy in a few weeks when she feels it is safe to push air through the intestines. We should have a little more information about what the thickening of the colon means after the colonoscopy.
    • Chemo- After much deliberation amongst the group, it was determined that I would be put back on the chemo regimen at a reduced dose of the SAR drug. I’m not sure how effective this will be in curbing my side effects as this drug could possibly be a placebo BUT it’s one less pill I need to take per day. Psychologically, it’s oddly helpful. So far this week I’ve experienced one day of visual blurring (common for first day back), fatigue (par for the course), nausea, leg swelling and stomach discomfort (details spared). So I suppose everything is back to normal then. It’s not great but it has been much worse.

I must be honest, I have thought a lot about quitting the trial over the last few months. It has been incredibly difficult and when my last CT scan came back at a plateau, it was tough to swallow. Through the last few weeks of being off of the drug I have had to physically, mentally, and emotionally rally. I think I am in a place now where I can at the very least commit to a few more months of this and see what comes of it.

As I have said before, part of the challenge is having no defined end date. It’s just this endless cyclical shitstorm. I’m going to try and reframe this in a more incremental way. My next CT scan should be in April. If I can just make it to April I’ll be okay. It doesn’t mean it’s over then, but it’s a small leg of the journey that I can compartmentalize.

So that’s all I have to say about the visit. A long day and not a lot of news.

Lastly, but most importantly I must express my gratitude…

Holy moly the response to my request for help has been unreal!!!! This past weekend alone, Cory insisted that I relax in the bathtub while he clean my apartment himself (boyfriend of the year, right?). From coast to coast and beyond the US people have been graciously helping in any way that they can. I have received delicious, healthy, home cooked meals made with love. I have received thoughtful gifts, offers to accompany me to the doctor, offers to help with laundry/cleaning/errands, generous monetary contributions to help with medical bills, and beautiful encouraging cards/texts/messages.

All of these acts of kindness add up and make my life a little bit easier, but more than anything they lift my spirits. It’s a major reminder that as fiercely independent as I would like to be, I cannot do it all myself. Your kindness is fuel to keep going and keep trying even in the midst of a difficult day.

THANK YOU for every little act of kindness!

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