On the surface birthdays are kind of weird, right? You rally your friends and family to celebrate you simply just being born (with little to no props to mama for housing you rent free for the better part of a year). You … Continue reading
Happy New Year!
This time of year has been challenging for me in the past two years as it has been met with troubling news followed by invasive surgery. Not this year! Aside from the general unpleasantness that comes along with the treatments I receive, my December and holiday season has been pretty normal.
Last night I rang in the New Year in some dive in Johnston (for anyone familiar with RI, I know right!?). I threw on my sequined skirt and glittered, tiny, top hat and had the best time. It was arguably one of the best New Years Eve’s that I have had in a long time. No cover charge, no crowds, no hype. Just a dive bar, a couple of friends, my handsome gentleman, decent music, and dancing. (I also apologize to anyone that tried to contact me last night, I left my phone home accidentally before I hopped in the cab.)
I can’t put my finger on exactly why it was so perfect. I think mostly chance. Going to this place was a super last minute decision (as in decided 30 minutes before we went out) so we really didn’t have time to set expectations. No, wait, I lied. I’m a liar. We actually were very skeptical of this being fun and went with it on a hope and a prayer that it wasn’t a suckfest. Luckily we were in good company and thoroughly enjoyed ourselves. It was simple and simple is all that I needed.
An enjoyable New Years Eve is perhaps a good omen for 2015.
Since I was without a phone and subsequently a camera, here are the only pics I snagged:
Whether you curled up in your sweat pants, froze to death in Times Square, or raged in a VIP lounge over $1000 bottles of champagne, I hope you had a memorable night with loved ones (or if you don’t remember, have friends that are kind enough to TELL you about the night before instead of post evidence on Instagram).
To come:
Lastly, in the spirit of a new year I gave the blog a little makeover. Nothing crazy, some different colors and links at the bottom. Aesthetically pleasing? Yes? Do we like this?
Now go nurse your lingering hangovers. I told you not to drink Andre.
So how is everyone holding up post-Christmas/Hanukkah/Holiday madness? We good?
I hope everyone enjoyed some time off, spent quality time with their families, and had a chance to recharge their batteries (or in the case of the Blythe family, got new batteries from Tom Tom).
After my epic, amazing, Hanukkah with family in Connecticut I had to head back to the littlest of Rhodey’s for work on Christmas Eve. Believe it or not I had not one but two student appointments. I was shocked but it certainly helped to move the morning along. Around 11:30am, President Machtley got on the horn and announced that Bryant would be closing at noon (surprise!) and if our supervisors said it was okay, we could leave right then. I’m pretty sure we had the lights off and door locked by 11:32.
Later that evening I was taken in by my second family and spent Christmas Eve with Katie Carlson’s family. Now that I’ve spent Christmas with them, and am basically a cousin, I think it is overdue that I legally change my name to Jessica Gail Sultaire-Blythe-Carlson-Cunha-Hart-O’Hara-Shmase. It has a distinctive ring to it and will secure my place in future secret santa’s. But on a more serious note I am so thrilled to have been included in both the Cunha and Blythe Christmas parties. As always I was made to feel at home like part of the family. I appreciate the warmth and unnecessary gifts (that I love so much!).
Thank you Bear Family!
The best gift of all was snugs with my love, Major. How hard do you think it is to steal a big, dumb, dog roughly the size of a lion? Hypothetically of course…
I would like to thank everyone else that kindly extended invitations to spend Christmas with them! It was incredibly thoughtful to think of this lil’ jewbie on Christmas.
On Christmas day I turned down the gracious invitations because I had something else in mind. The past two Christmas’ were soured by illness and surgery. I know what it feels like to be in the hospital on Christmas (see last year’s Christmas Entry: Bah Hum Bug). Jewish or not, it sucks. It’s depressing and isolating. So this Christmas I was determined to go back to the hospital so I decided to sled off of my roof…KIDDING!!!!!!! I asked to be a volunteer.
I was hoping to volunteer in women’s oncology but there really was nothing established that I could do. In the future I might try to develop something. This is something I need to remember to tell the oncology advisory council (oh yeah I do that too now. It’s pretty awesome. More on that later). So instead I turned to Dr. Robison and The Izzy Foundation.
The Izzy Foundation built a gorgeous family room on the 5th floor of Hasbro Children’s Hospital that they staff with volunteers regularly for maintenance and periodic activities. My experience there was great but certainly different than I had imagined. There were less children than I anticipated, I only came across 3 in the 4 hours I spent there. It was mostly parents and family that were tired, rundown, and in search of respite (and coffee). I made friends with a 9 year old name Kyle after making him a hot chocolate. He was in and out of the room throughout the day and I was always happy to see him return. He didn’t tell my why he was in the hospital, nor did I ask but it was refreshing to see a smiling face despite his circumstances. Kids are awesome in that way. No matter how sick they are, when push comes to shove they are just kids who laugh and smile and want to play.
Many parents reminded me of my own. Each one was eager to tell their story. They needed to be heard so I listened. Between the burst appendices, mystery diagnoses, flu’s and pneumonia’s, each person had a unique story to share. Each person was stoic and brave for their children but clearly internally exhausted and fearful. I didn’t do anything special that day. I just made sure the room was clean and that patients and families were comfortable but I felt that my time couldn’t possibly be better utilized on that day.
For privacy I did not take photos of the families but I did take some of the room when it wasn’t being used:
I definitely enjoyed my interactions with the families at Hasbro and certainly intend on volunteering in the Izzy Room for the Izzy Foundation again soon.
On that note I’m off to Connecticut to see a certain, handsome, bearded fellow. Spoiler Alert: It’s Cory. Sorry to everyone that was hoping that I’m secretly dating Gandalf.
Season’s Greetings my friends! I hope everyone in enjoying Hanukkah, about to enjoy Christmas, and having a general period of relaxation (or frantic last minute shopping…slackers).
I am pleased to say that despite the holiday season hustle and bustle, December has carried a slower pace. The semester has finished therefore my advisees have taken their finals and left school until the end of January. Grades are starting to trickle in so I cannot quite do all of my reports just yet. That being said work has momentarily slowed down…for now.
Between the trial and trying to keep up with life’s demands, responsibilities, and general fun I’m feeling pretty run down again. There is very little respite from the chemo and what goes along with it.
In an average week:
Taking that into consideration, wanting to choke down these pills twice per day is to say the least a chore. Comparison: You went to a restaurant and got food poisoning then ate the leftovers the next day knowing full well that you would still have food poisoning. Not fun. Don’t like it. Don’t want it.
On the flip side, the treatment is working as far as we know from November’s scan. I know that I have previously stated that I am coming to terms with the fact that this is a slow process and I need to roll with it on the road to healing blah blah blah… but when I’m in a chemo slump I get cranky.
I would love a break for a few days. I am not entirely convinced that my side effects are severe enough (believe it or not) to warrant another chemo-cation but it is worth inquiring. My next CT scan is in 2 weeks and the next check up in Boston is in 3 weeks. If I see some more progress perhaps that will give me a little boost even if I can’t get a chemo-cation.
Universe, give me strength (mostly not to throw that goddamn palm pilot against the wall the next time its alarm sounds for my next dose).
Despite feeling run ragged, I can always count on my family to lift my spirits. Luckily, this past week was Hanukkah and I was able to take two days off of work to spend some quality time with my family back home in CT. Even better was that my brother Adam was able to fly in from California to join us this year. There are few people on this earth that can make me laugh harder than Adam so I knew the trip would be good for the soul.
Great food was had (Thanks everyone who brought something delicious to the Hanukkah party!), dreidel was played (I won me some laundry money!), and many laughs were shared.
Cory received a “man crate” from Adam and Mom is here ^ clearly nailing this selfie.
I started making candy dreidels for Hanukkah when I was 5…nearly 22 years later there is no end in sight.
Cory, Adam, Uncle Mark, Phyllis, Tammy, and Aunt Sheila just shooting the shit. Fun fact, minutes later we started spinning dreidels and in an attempt to wow us with his amazing spin, Adam’s somehow bounced into the candle splashing wax everywhere and basically ruined Hanukkah for everyone, forever. (Kidding, love you brother)
The kids table will forever be the kids table, even when we someday have kids.
Cory survived the meeting of the big brother (and family) and I would say he passed the family approval test with flying colors. In fact, Adam and Cory got along a little too well. As a fun little way to bring us together I bought a few nerf guns thinking Adam, Cory and I could do some target practice in the basement. Within minutes of opening the box I quickly realized that an alliance was formed and I was the target. I suppose I had that coming. Anyone that knows Adam also knows that he wouldn’t resist the opportunity to shoot a sticky dart at my glasses. Sooo…that was fun. But on a serious note it was great to see everyone come together so naturally.
Even though this entry was full of complaints, it is clear that it is also full of a hell of a lot of joy. I am so thankful and grateful for my generous, loving, crazy family.
I hope everyone enjoys their holiday season and has a safe, happy, wonderful time with loved ones!
I met Alicia in April in Las Vegas. We were sitting in a Cancer as Chronic session at the OMG 2014 conference for young people with cancer. When the facilitators asked if there are any questions I had stood up and asked them to address their experiences with clinical trials. Unfortunately, they never got around to addressing my concerns about clinical trials but Alicia did.
As I was getting up to leave when the session ended Alicia approached me and introduced herself. Alicia was close in age to me and from Toronto, Canada. She told me that she had advanced stage Ovarian Cancer and has done a number of different clinical trials between Canada and the US. She shared the ups and downs of many of the experimental treatments that she had undergone over the past months. This was around the time I had to make the decision to pursue the Pimasertib/SAR trial (the one that I am currently on). When I told her the decision I was faced with and what I knew she assured me that she had great results but unfortunately had to go off of the trial due to unrelated complications.
By the end of our conversation I felt comfortable with the decision to pursue this trial. It was as if she was divinely placed there to give me a sign that this was the right decision. It was reassurance, and warmth that gave me the courage to ultimately say yes to this opportunity that I so feared. I was leaning toward doing the trial on my way to Vegas but when I left there I was confident that I was making the right choice for my health.
In the months following the conference Alicia and I corresponded through Facebook. I could tell that her health was declining. She was in and out of the hospital with bowel obstructions amongst other issues. At the beginning of October she had kidney failure and her doctor gave her six months to live. Last month she moved into hospice care. I remember saying to my mom bluntly “I think Alicia is ready to die”. It was such a grim thought, but more grim was her reality. Her quality of life had deteriorated. Constant pain, not eating, being unable to take care of yourself? That is not how anyone should have to exist. That is sure as hell not how Alicia wanted to live from what I had gathered over the few months I corresponded with her.
Yesterday I hopped onto Facebook to see if her family had posted any updates on her progress, as I do periodically
. My heart sank as I read that she had passed away. She passed peacefully in her sleep surrounded by family, which is all one could ask for in that situation.
There are no winners and losers in chronic illness. You do everything you can physically, mentally and spiritually and that is all. Alicia was a remarkable woman and though our friendship was brief, the impact she had on me and my recovery was significant. It was jarring to learn of her passing, but I am relieved that she has found peace beyond the physical world.
Alicia Merchant- your influence, poise, and kindness will not be forgotten.
I hope that everyone had a lovely thanksgiving! I was fortunate to be home in Torrington to spend the holiday with my family. By the time I arrived in Torrington, the city already looked like Frosty the Snowman had a big sneeze. We even had two massive tree branches fall from the weight of the snow.
The first snow is always to beautiful and picturesque. By the end of January I may need to go out of my way to witness a crime so that the Witness Protection Program could relocate me to a warmer climate. Extreme? We shall see…
I thought that this Thanksgiving would be more emotionally charged but really it felt like any other holiday. It wasn’t this grim reminder of finding out that I had cancer. It was just Thanksgiving. Good old turkey-eating, pie-gorging, Scrabble playing Thanksgiving. This time last year I was preparing myself for yet another surgery so I was still in the midst of all consuming cancer world. I remember feeling this intense need for camaraderie with other cancer crushers. I do still need that in my life but not with the same immediacy as this time last year. It was quite honestly a relief to not experience this holiday with a black cloud looming over it.
The time I had off was perfect. My parents and I had mini-Thankgiving the night before actual Thanksgiving. Hence my mom’s delighted face as she rubbed seasoned butter underneath the bird’s skin. 
We spent my first day home relaxing, cooking, baking, and playing games. It was nice to have leisure time with my parents and no where to go. Truth be told I spent about 85% of my 5 days at home unapologetically in my jammies.
On actual Thanksgiving we headed to my cousin Sara’s house for an incredible spread. She is just amazing from the food down to the decor of her home and table. I’m pretty sure that if you cut Sara open you’d find Pinterest boards instead of vital organs. It was perfect and I was so thrilled to share her and her fiance’s first Thanksgiving in their home.
The only snag that day was on our up to Sara’s I was pretty nauseated. It only took a few bumps in the road before I was vomitting into the shopping bags that my dad luckily packed. When the snow melts in Litchfield someone is going to find a big ol’ bag of puke in the street. Sorry…
After the vomitting had subsided I had a nice empty stomach to fill up again on Thanksgiving food. In fear of another episode I didn’t over do it. (Unfortunately I DID overdo it the next day at lunch so again, puking commenced). How can a person have so much puke?! HOW?!
Well I would rather puke and feel relief than not and be nauseated. Damn you chemo.
On a less gross note, I got to reunite with my girl Jamie Anulewicz at where other than Twinco for breakfast. It felt wrong being there in the daylight, sober, amongst respectable people. The Thanksgiving football game we intended to go to was cancelled. We were hoping to see our old band director, mentor, friend, and resident bald guy- Mr. S. Wayne, if you’re reading this we missed you!!
I also hit the mean streets of Torrington with my wolfie pup Michelle. We felt that Dos Amigos was probably the most age appropriate place we could find short of crashing the Class of 2004 reunion. We had a margarita (sorry liver) and caught up. We have come a long way from binge drinking the night before Thanksgiving and eating the pancakes her mom would make us at 2am (shout out to Elaine for those pancakes!).
My lunch break is nearing its end so I must head back to my office. I hope that everyone had an amazing Thanksgiving!
Gobble.
It is difficult for me to wrap my head around the fact that exactly two years ago today I was sitting in a hospital bed and a doctor was telling me that I had cancer. In some respects it feels like it just happened, in others it seems lightyears away from where I am now. Two years later I still have cancer and two years later I am still thriving.
This year was so much different than my first year with cancer.
1.) I think the most obvious difference is the course of treatment and the physical impact it had on me. In year one I had dropped down to 85 pounds, I lost my hair, and walked with a cane. This year, despite having ANOTHER major invasive surgery and undergoing a different kind of chemo, my illness was not as obvious to others that did not know me. My hair is back, my weight is normal, and despite being constantly pale (I think I would have been anyway) I look like any other person.
2.) This experience was more solitary in nature. I wouldn’t say that it was private as I clearly spill my guts to the world in the blog, but it was different. I take my drugs at home, I am at the hospital less frequently, and my reactions to the drugs typically happen pretty privately (except for that time I threw up on the side of the road on Gano St. after the NOCC walk. That was super public.).
At the beginning of my trial I felt really alone. I didn’t know anyone that was doing this trial so I couldn’t really find anyone to relate to. I was transitioning away from Women and Infant’s, an institution so dear to me, and it was hard not constantly seeing Dr. Robison, Sheila, or my social workers. Between getting used to this trial drug and navigating my new-new-normal, I felt pretty lost for a few months.
3.) I experienced survivor’s guilt for the first time. There is a young woman with OC that touched my life in a significant way this past spring. Her influence is a major reason that I chose this trial. Currently, I am living quite happily and semi-normally while she has just been moved into hospice. It’s not fair and that has really bothered me.
4.) I have the ability to give back to a community that has served me with such love and compassion. This year has consisted of fundraisers, a service trip in DC, and joining the Women and Infants Oncology Patient & Family Advisory Council. I couldn’t ask for better opportunities to serve the cancer community and beyond.
5.) I have bought into the notion that cancer is not black and white. It is possible that illness could be part of my life for a long time. Regardless, I know and believe that I will continue to have a very fulfilling life.
What hasn’t changed? I still have the greatest friends and family of all time!
There were plenty of hardships and I even considered posting some of the pictures that I have taken to document the more difficult times but I when I look back on the past year, it was still so rich with fun, love, and great memories that I think that deserves to be highlighted most.
I have said time and time again, I am not afraid to die but my greatest fear is a life unfulfilled. After looking back on these joyous moments, I can say that my family and friends certainly ensure a fulfilling life.
Cheers to many more years.
The long anticipated CT scan results are in (as of Tuesday, sorry). As I discussed in my previous post I was feeling a bit of anxiety surrounding this scan. Considering that each winter since 2012 I have been told that I have cancer (or cancer, again) I could not stop myself from thinking that perhaps I had fallen into the depths of a bad health curse. This curse surfaces every November and plagues every winter. This is a piss poor attitude to go into a doctor’s appointment with because it is based on something as imaginary as unicorns. My circumstances are different, I’m under different treatment, and everything leading up to the CT has showed positive trends.
My CT scan results showed that even with the dose reduction, the tumors have reduced in size by a total of 27% since we have started the trial.
Cue celebration:
Recap:
CT scan #1- August: 5%
CT scan #2- September: 18%
CT scan #3- November: 27%
I am 3% away from what is considered a partial response. Dr. Birrer said that he was pretty confident that by my next visit in January, we would hit a major milestone. He also said that at some point it will taper off likely around 50%. The impression that I got is that (although we can hope!) I should not set my expectation for 100% shrinkage. BUT for now let’s keep celebrating every victory.
SO, that’s good.
This past week was all over the place. Last weekend Cory and I took a trip to Portland, Maine. It was absolutely beautiful.
On Saturday we spent the day taking a walk along the bike path, going to a mead tasting, annnnnnnd watching tv in the hotel as I violently vomited for 8 hours. Yep not all roses. Little did I know that this was the beginning of a virus. We had just waited an hour to get into a restaurant called Duck Fat (holy-overindulgence Batman).
We ordered our food and sadly I only had 3 fries and 2 bites of soup before I agreed we had to pack up our food to go and head back to the hotel. I was in so much pain that I thought I was having another bowel obstruction but it was just my guts twisting and turning as I vomited every ounce of anything that was in my system at the time. Per usual Cory was a champ and took care of me. I had forgotten to pack pj’s so he even surprised me with fun jammies when he went out to get himself some dinner.
The next day I woke up and felt much better so our Portland adventure lived on! We walked all around old Portland and went into some very interesting and adorable shops. We stumbled upon a fence where people have attached locks with their initials or names. Very similar to what can be found in other cities and parts of the world. It just so happened that I carry around a lock in my purse for the gym so I had one on hand! We awkwardly hijacked a sharpie from a Starbucks barista across the street and initialed the lock to add to the fence. Next time I should get an engraved one that says: “I came, I puked, I conquered”.
After a full day of wandering around historic Portland we couldn’t leave without doing two things:
1.) Eating a lobster roll
2.) Checking out the lighthouse:
Despite getting really, alarmingly, sick…it was a solid weekend get-away. We didn’t make it to any of the breweries but perhaps next time.
So after feeling generally well on Sunday (minus some stomach discomfort later that night) one can imagine my surprise when I woke up on Monday with a 102.6 temperature. I was so delirious that I couldn’t even drive myself to the walk-in clinic (let alone walk in a straight line). Thank you to Tom Tom Blythe for picking me up and Katie for arranging it! After 3 hours of testing and waiting they were able to rule out the flu, mono, and strep. They chalked it up to “some sort of virus” and sent me home with the recommendation of Motrin or Tylenol. My poor parents canceled their plans, drove up 2 1/2 hours to pick me up from the walk-in and take care of me. When we got home to my apartment, they cooked for me, did my dishes, and made sure I was okay. What good sports! They even came back the next day and took me to Boston for my doctor’s appointment. THANK-YOU Mom and Dad! I really needed them there so it was nice to have the support as well as share the good news from MGH in person.
I am bouncing back quickly from the virus and feel just fine now! Thank goodness.
On a final note, I would like to congratulate my homegirl Jaclyn Munson on her acceptance to law school!
May you give hundreds of side-eye looks of death to your peers on the road to a JD!
Cheers.
Considering that I have a 7am CT scan tomorrow, I should really be asleep right now. It just hit me that I’m a tiny bit nervous. I’m not concerned about the CT scan itself, I’ve had more than I can count. Generally it’s a pretty straight forward event: 1.) Change into gown 2.) Drink two cups of water 3.) Have nurse access chest port 4.) Pump blue contrast dye through port (EDIT: not blue and not sure why I assumed that) 5.) Lay down (and always accept the warm blanket when offered) 6.) Listen to the robot voice cues: “BREATHE. IN. HOLD. YOUR. BREATH. (pause) BREATHE.” 7.) Glamour shots.
Truth be told it’s the third most relaxing test behind echocardiogram and ultrasound (if you don’t count the needle part). Or perhaps I’m ranking it third because the technicians in the Women and Infant’s Radiology department are some of the nicest people ever so all in all it has become tolerable.
Anyway, the reason I am feeling a little nervous is because I’ve seen great progress since I have started the trial when I was on the max dose. I would hate for that progress to lose its momentum. This will be the first CT scan since the dose reduction so I am not sure what to expect. The obvious best case scenario would be that there is continued tumor reduction and a less favorable but still acceptable outcome would be no change. I doubt that there will be growth considering that my chemo dosage is still considerably high. Despite the outcome, I know in my heart that dose reducing was the best option and I regret nothing.
The most control I have over this situation is to just keep choking down the pills. The outcome is out of my hands so these butterflies in my stomach need to calm the hell down so I can get some sleep.
On a positive note:
MGH ordered an ultrasound on my right leg due to the excessive swelling. As I suspected the ultrasound showed no signs of a blood clot so I was pleased with this news. The last thing I need is a surprise case of deep vein thrombosis. Even the name of the condition sounds painful. Anyway, the jury is still out on my right cankle but it’s nothing serious.
But really this time- SLEEP.
Goodnight moon.
Homegirl needs some Vitameatavegamin. 
I’m running on fumes here. I had an oddly energetic day on Monday but other than that I am pretty beat.
Seriously, I don’t know if the fatigue is caused by the trial or because your late 20’s equates to traveling at warp speed into full-on chronic exhaustion. If I feel this crappy now, I am doomed when I start pushing 90.
Work as of late has been demanding (as I anticipated). This time of year brings in a high volume of students which means little down time, some late nights, and the constant feeling that you are forgetting something… DAMNIT what am I forgetting?! Luckily we have a really great staff that collectively does an excellent job during this high-stress time of year. This busy period lasts from about early October to late November. Come December 5th-ish I think I’ll finally be able to breathe.
In the interest of self-care I have been making it a point to take a full lunch hour as often as possible or at the very least close the door to my office during lunch and quietly answer some emails. At minimum I make myself take 30 minutes to clear my head. On my worst days I have even sprawled out under my desk with the lights off. You do what you have to do, right?
I sent myself home from work last Thursday on a morning that followed the pattern of : student, vomit, student, vomit, etc. I can be a little stubborn when it comes to going home sick. Perhaps it’s the “Santoro girl” in me or the self-imposed guilt but I rarely send myself home. This time I knew that a fully booked afternoon of student appointments would not be productive, fair to my students, and certainly not fair to me ailing body. The afternoon in bed did me well and I was back to work the next day.
As I have reported previously the side effects of the chemo trial have curtailed a bit:
Since I only go to the doctor every other month now this is what you can look forward to in November:
–November 12th, 7am CT Scan (Please join me in thinking positively that my tumors are continuing to shrink. Stable is fine but a decrease in tumor mass would be just lovely)
-November 18th, full day in Boston. Battery of eye exams, echocardiogram, pre-dose and post-dose EKG, bloodwork, and review of my CT scan.
–November 23rd, my TWO year anniversary of being diagnosed with cancer. Well, time flies when you’re crushing a chronic disease huh? I have a lot of mixed emotions this time around so you can certainly expect a “year in review”
I hope everyone is having a great week! Stay tuned…
The Cancer Chronicles 