On the heels of a difficult summer, fall has started with a bang. I am always happy to share the more uplifting events (we’ll get there, promise) though there is a lot to be said for the more difficult moments. I find that I hesitate to openly write about the daily struggles in this blog. I prefer not to shout complaints from the rooftops especially when I am physically so much more capable than I was almost two years ago. The struggles are not pleasant and manifest physically and emotionally though they are not always noticeable to others. The struggle is often compartmentalized and dealt with quietly and internally in order to continue operating. Appearing well is sometimes harder than looking sick for this reason (I do not mean in regard to how others view you). It is easier to forgive yourself for being bedridden than sluggish no matter how many times you vomit that day. Frustration arises when I say to myself “I SHOULD be capable of more right now”. One of my mother’s greatest pieces of advice is to “stop saying ‘should’ or you’ll be ‘shoulding’ all over yourself.”

I am run ragged most days due to my body generally revolting between the hours of 3am and 5am (much to my dismay cancer’s wrath does not abide by standard business hours).I spent the better part of Thursday between the couch and the porcelain throne. In an effort to not “should all over myself”, I stayed home from work. No one needs a pukey/nauseated/grumpy advisor. By 5pm I regressed into a child needing their mommy and called my parents just to hear their voices. I don’t do this as often as my Mom and Dad would probably prefer but on this day I am glad I did. Dad did some excellent damage control and Mom swooped in for the assist. They truly are emotional magicians!

(speaking of magicians, my buddy’s friend Mat Franco won America’s Got Talent and is the first magician to do so! Look him up.)

In short, Thursday sucked. That being said, I am satisfied with my decision to practice a bit of self care. It does well for the mind, body and spirit.

Now onto the good stuff. Today’s “good stuff” agenda:
1.) Friday’s doctor’s appointment in Boston
2.) Jeff Goldman’s Wedding
3.) 501c non-profit funsies

Friday’s Doctor’s Visis
Overall this was a very productive and positive visit. Granted, I had a million and one tests performed so I was at MGH for 10 hours (not including travel time). One benefit of the 5am commuter rail is that it generally weeds out most of the weirdos encountered during rush hour.

I first had an eye exam and confirmed that there are still no retinal issues. This is the only side effect that I have not gotten, thank goodness. I then had an echocardiogram which I must say is almost as relaxing as going to the spa. The lights are dimmed, I’m wrapped in a warm blanket, and it is quiet aside from the sound of my own heart beat. Naturally I am lulled to sleep (thank you echo technician for kindly not waking me until it was time to roll over). Can I schedule this weekly? Please? If anyone here needs a break from life for 30 minutes, fake some heart problems to get in for an echo. You’ll thank me later.

That was followed by the standard pre-dose/post-dose bloodwork and EKG’s that consist of more waiting around for lab results than anything. This is the point in the day that took a bit of a turn. The medical team called down to MGH pharmacy to dispense my chemo and I was to be off on my merry way. I was under the impression that I was finally getting dose reduced since we had discussed it last month but I was not correct. This forced me to be very direct and clear about my needs. Practicing self-advocacy is extremely difficult, especially when you are talking to medical professionals. As a group we were able to make a legitimate argument that supported my need to dose reduce within the structure of the drug company’s very strict protocol. This has resulted in a surprise second chemocation! I am off the MEK inhibitor until next Friday, WOOOOOOOO!!! This coming Friday I am required to come back to Boston. The protocol does not allow patients to be dispensed drugs that they are not allowed to take yet (UGH dumb). I will have another set of labs drawn then resume chemo on a slightly lower dose.

I am setting realistic expectations here. I do not expect the side effects to go away completely; however, I am optimistic that they will be less frequent/intense/obnoxious.

Jeff Goldman gets married!
Yesterday Cory and I attended a beautiful wedding in Mashpee, MA to celebrate the wedding of one of my best friend’s older brother Jeff. I sadly did not snap a clear shot of the bride and groom but I can assure you they both looked great! I did get a few of my dapper boyfriend and wolfpack sisters (sister of the groom in the middle of Michelle and I):

I must commend Cory for being such a good sport and amazing wedding date considering that other than me he only knew Stacey (a person he met once). Despite not loving to dance he joined me on the dance floor for a bit and encouraged me to tear it up with my friends even if it meant leaving him at the table alone. He told me that he just enjoyed seeing me this well and happy. How did I get so lucky to find this gem? (Thanks Sam Favata!)

Overall the wedding was excellent and I cannot be more thrilled for the Goldman and Pozadas families. I wish them many more years of marital bliss.

(Bonus: the MGH medical superstar team told me I could safely indulge in some wine at the wedding. For the sake of being kind to my overworked/underpaid liver drinking alcohol will not be a regular occurrence but I will say that after several months of sobriety- IT. WAS. THE. BEST.)

SO MUCH FUNDRAISING
I am gearing up for the RI National Ovarian Cancer Coalition’s Walk to Break the Silence on Ovarian Cancer. I started fundraising on September 5th and exactly 16 days later the donations have poured in! Thanks to the incredible generosity of so many, I have been able to raise $2225!

To those walking with me next week, THANK-YOU! To those that donated, THANK-YOU! To those that are unable to donate at this time but cheer my efforts on anyway, THANK-YOU! I appreciate everyone’s support and enthusiasm.

So I just word vomited all over your computer screen (better than real vomit though!) but I am happy that I could share some great news.

I hope everyone has the greatest week!

Love and gratitude.

Happy Ovarian Cancer Awareness month! Let’s give it up for the lovely ladies that have lived with/live with OC and honor the cancer crushers that are no longer with us in the physical world.

60% of women with Ovarian Cancer are diagnosed at stage 3. Listen to your bodies ladies!

Chemocation ended a week ago. It was glorious! After only two days, the sores in my mouth disappeared entirely. My skin cleared up and has returned to it’s normal, sun deprived, pale-ish glow. I had more energy than usual and, as noted in my last entry, got a respectable amount of deep cleaning done in my apartment.

The best part of chemocation was the food. After a few days I essentially ate anything that I wanted without consequence. The key word there is that there were days that I wanted to eat. Cory, being the thoughtful gentleman that has is, drove up from CT last Wednesday to take me out for a dinner. He made sure that the last night of my chemocation was special and said that we could go anywhere I wanted. We went to a new spot in Providence called Providence G and we dined on the rooftop. The weather couldn’t have been more perfect and the food was amazing. We gorged on a lobster BLT appetizer, pork belly appetizer, and a brick oven margherita pizza (yeah, yeah, I know it’s not the portrait of health but I apologize for nothing). It was the first time in a long while that I truly enjoyed the experience of dining. Sharing this meal with my partner in crime was a huge bonus.

I’ll shut up about eating in a second but I must acknowledge the myriad of ice cream flavor suggestions that I received at the beginning of chemocation. I appreciate the all of them and wish I had the time, money, energy, and stomach capacity for every suggestion. I went real classic with this one and ended up getting a small strawberry milkshake. That did the trick.

I have been back “on drug” (to quote hospital jargon) since last Thursday. I made a quick trip up to Boston and have continued the initial dose a week ago. It kind of hit me like a ton of bricks. I felt fine until the next evening after work when I came home and napped for about 4 hours, took a bath, then slept until the next day. On Saturday after my good night’s sleep (borderline coma) I felt pretty good. I had to work for a few hours in the morning then drive to CT to see Cory. In CT I had stretches of time where I felt totally fine and other moments where my stomach revolted and vomiting/unpleasantness ensued (did I mention that my boyfriend is incredibly tolerant?). To sum it up, the past week has been a mixed bag of feeling okay and less than okay.

My next doctor’s appointment and CT scan will be on September 19th and 20th. We will discuss dose reducing with my medical team at that time. I am curious to see if there has been more tumor shrinkage. One can only hope considering the toll these drugs are taking on my body (fingers crossed).

I must invest all of my faith into this for now and believe that it will pay big dividends.

To end on a happy note- my CA 125 has gone down to triple digits. 956.5 (gone are the days of splitting hairs over 34 vs. 37) I’m just happy to see it come down from over 1200. My “safe” number according to MGH is below 35 and according to WIH my “safe” number is under 21.

Ultimately the only test that matters is a CT scan that says “No evidence of disease”. Let’s aim for that, okay? GO TEAM.

I am pleased to share with you that I am on vacation. It’s not a “Wooooo!! Spring break! Cancun! No parents!” kind of vacation. It is the vacation your doctor’s give you from chemo when your quality of life is in question.

I went to the doctor last Friday accompanied by the lovely Sarah. The beginning of these appointments after they take your weight and blood pressure are to assess and “grade” each one of the side effects that are having an impact on your life. As I mentioned in my previous post there are quite a few side effects that are making everyday life a bit challenging and unpleasant. You know how you feel when you have the stomach bug? That’s most days for me. My stomach is torn up, my appetite isn’t great, my hands and feet are swollen, I’m nauseated to the point of vomiting at least once per week, and I have an invasion of mouth sores. Fatigue goes without saying but aren’t we all?

Everytime you report a side effect to your medical team they need to know in full detail the frequency and severity of what you are experiencing. They use your feedback to put it in a nice little category and “grade” your side effect based on an established criteria. The trial has a protocol for EVERYTHING. Grade 1 nausea? Do this. Grade 2 mouth sores? Do this. Usually the “do this” part is some sort of pill. The tricky part is that each pill comes with a price. For example, I took myself off of the pill prescribed for skin rash because it was intensifying my stomach issues. It’s like this never ending cycle of pill popping to keep up. I don’t want to be taking 20 pills a day to feel partially normal. My liver is already overworked and underpaid.

I expressed this to a few members of the medical team and I was pleased to see just how responsive they were to my concerns. I asked the NP how long they projected me to realistically be on these drugs and the answer was “ideally, indefinitely”. It was a punch in the gut to hear the word “indefinitely” as I am only 12 weeks in and feeling so out of sorts and worn down. It was at that point that I could no longer hold back my tears (the NP even started to tear up as well). They really empathized with me and the toll the trial is taking on me both physically and emotionally. We had a very open and honest dialogue about the importance of quality of life. I told them that if they foresee me on this drug indefinitely, this is not sustainable as it is now. It’s just no way to live.

They really listened. They didn’t dismiss my concerns and it was evident that they wanted me to feel well and in control. This conversation reinforced that they view me as a person first and a research participant second.
With everything on the table, we made a deal. They are giving me about a week off from the MEK inhibitor. I’m on a really high dose of that drug and it’s the culprit when it comes to the majority of the side effects I am experiencing. I am still required to take the other pill which is either a 2nd drug or a placebo. Once the mouth sores clear up (good riddance) I will return to MGH in a week or so and they will do some blood work and dispense the MEK inhibitor to me at the same dosage. We will check in toward the end of September following my next CT Scan. After that, at my request, we can discuss reducing my dosage.

My hope is that the cancer will still stabilize (or die a painful death) being on the drug longterm but the side effects will minimize once I am on a less intense dosage. I told them that I want to dose reduce (badly) but I do not want to compromise my progress. They assured me that in trials it is very normal to start at the highest dosage and eventually dose reduce.

A few people asked me what I’m going to do this week since I’m off drug. The answer is eat ice cream. I am going to eat ice cream without living in fear of a stomach revolt. Flavor TBD.

Oh and fun fact- I kicked off my chemocation by going to the Providence Roller Derby (if you haven’t seen this before or don’t know what it is, google it. I can assure you that it’s intense and these women are not to be messed with). To my surprise Michelle Kwan was there as a celebrity guest (um, what?). At the beginning of half time she walked by my friends and said “hi” to us. I was oddly starstruck and just smiled back at her like a goon without saying a word. I turned around at my friend Erin and she was also sporting a goon smile. So basically we looked like idiots. I would chalk it up to a win.

My second and final win of the weekend is that I had enough energy today to clean my entire apartment top to bottom, do 2 loads of laundry, and run to Savers to donate some clothes and household items. It’s amazing what you can accomplish when you aren’t slowly and systematically poisoning yourself. Am I right?

Whenever there are sizeable lapses in time between blog posts I can always count on Stacey Goldman to give me a gentle kick in the pants. As of late I have been doing more of my writing offline in a beautiful notebook that I purchased on downtown Providence at Craftland .

As an aside I’m totally in love with this little gift shop. It highlights the work of local artists, captures the unique spirit of Providence, and generally has some fun items that remind me why I love living in this strange little city. I took a week off from work recently to enjoy a bit of the summer away from my office. One day I walked downtown, scooped up the journal as seen above, picked a spot with a view on the new Providence G Roofdeck and put my pen to paper. It was beautifully peaceful. There is something liberating about writing, without censoring yourself, while sipping a cold (non-boozy) drink on a roofdeck, in the middle of what should be a work day. If I could have added a fuzzy bathrobe and blankie to that equation I would have been set for hours.

My new writing spot is establishing in my spare room. Little by little I am turning this room into a happy little zen den where I can snuggle up with a book or my journal and stare out the window at the scenery (in my neighborhood the scenery typically includes a shirtless man yelling nonsense, a handful of hipsters, a tree and a chinese restaurant. If you catch the breeze just right, you get the tantalizing aroma of egg rolls). My parents have graciously given me a big, brown, squishy recliner that was in our house in Torrington. In fact, it’s the same recliner that Dad moved into my bedroom while I was recovering from my initial surgery. For a few months it felt like my life only existed between my bed and this chair.

Okay readers, I know you didn’t log on to read about a brown chair, you want to know the extent to which I am crushing cancer. I haven’t had a doctor’s appointment since I last posted so I have no test results to share. I can; however, tell you about the wonderful world of side effects.

1.) Tummy Troubles: As I have complained about time and time again, this chemo is super harsh on your stomach. I will spare you the details but I have a “sad tummy” almost daily. I was finally prescribed something a bit stronger and it certainly helps. What I did NOT realize until this morning at my work retreat is that it makes you kind of drowsy. I wouldn’t say that I would be considered “fall asleep at the wheel sleepy” but I can say that I wasn’t busting at the seems with energy. I felt foggy at best. It wasn’t until I consulted the bottle’s label and saw “May cause drowsiness. Use caution when operating a vehicle or heavy machinery”. Whoops.

In a nutshell it really sucks. It has limited some of my activities and social engagements. It is much better than feeling bound up but again, it is limiting and embarrassing aaaaaaand I hate it.

The nausea and vomiting occurs less frequently than the stomach trouble but I’m still averaging one solid puke a week. Truth be told, I’d prefer the vomiting. Is that weird?

2.) Mouth Sores: It is typical for mouth sores to occur on this treatment. Actually, it is fairly common with traditional chemo as well. I was very fortunate to dodge them the first time but this time I was not so lucky. I have tried many remedies to help relieve the pain and irritation of the sores that have sprung up about my gums and on/under my tongue. My mom came taught me about one remedy that has provided some temporary relief. Ice cubes made of throat coat tea. It is made of slippery elm and licorice/marshmallow root. It tastes delicious and calms the irritation while you suck on the ice cube for a bit. Sometimes I will wake up in the middle of the night from the discomfort from the sores so I will chomp down an ice cube and go back to bed. That will typically suffice until morning.

My mom, my dentist, and Sheila had also recommended “Magic Mouthwash” a prescription mouthwash. The lovely people at MGH wrote me the script at my request. It is a compound that consists of an antihistamine, antacid, and anesthetic. Basically it numbs the crap out of your entire mouth. I honestly am unclear on how or if it is helping to heal the sores but at the very least it gives me a few pain free minutes each morning and evening.

3.) Fatigue: I really struggle to keep up with my preferred pace. I’m completely wiped out after work and find myself only making it to the gym about once per week. In an effort to maintain “normalcy” I foolishly push my physical limits when my stomach is feeling well. For example, on the Cape last weekend it was a beautiful day and I wanted to go for a bike ride. Cory and I rode 13.8 miles which felt great at the a time. Needless to say I was posted up on the couch after work and in bed early every day for the next three days. I should stick to yoga.

I need to do a better job of not only listening to my body, but respecting that it has its limits and not feel down for needing more rest. I mean, I slowly poison myself a little bit every day in an effort to keep on truckin’. I guess I can cut myself some slack.

4.) Diet: Eating has become daunting for a few reasons. First, my mouth sores are irritated by almost anything that touches them. Therefore, anything remotely acidic or spicy is a big huge no-no. Additionally as I discussed in the “tummy troubles” section, my stomach is very sensitive at the moment so the cancer fighting foods that I would typically try to incorporate into my diet (ex: leafy greens, cruciferous veggies, berries, etc.) digest about as well as Shaq’s acting career.

After a lot of frustration I finally went to see Lauren at WIH. Lauren is a registered dietitian specializing in oncology nutrition. We discussed what I was eating (and not eating) and discussed realistic meal options that took into account: balanced nutrition (food as medicine), a sensitive stomach, my favorites and convenience. Lauren totally understood that I don’t have the endurance or energy to work 8 hours and then come home to prepare a feast. I was really pleased with her recommendations and so far my meals prepared at home have been a lot easier on my stomach but satisfying.

What becomes stressful is eating out. When I am preparing food for myself I can be more intentional about what I am putting into my body to ensure that it doesn’t irritate my mouth and stomach. At a restaurant, you’re at the mercy of what they have. If it’s a good restaurant, they sure as hell don’t specialize in light and bland fare. What is even more distressing is that I LOVE food. I thoroughly enjoy the experience of a meal out. With dietary restrictions, the fun is sucked out of it. This experience becomes especially stressful when you are dining with acquaintances that don’t know you well. You don’t want to be the person that eats a piece of bread and orders a side of rice as an entree.

So that’s where I’m at.

I have my next doctor’s appointment in Boston this coming Friday. Aside from blood work and an EKG I’m not sure what they have planned for me. I’m mentally preparing for a long day just in case.

That is all for now. I hope everyone is enjoying the final weeks of summer!

(Stacey- this post is especially for you. Cheers to the decline of your work productivity. I’m home sick today so I’m this is probably going to turn into a novel.)

Hello my dear supporters, we are officially eight weeks into my trial treatment. I have faithfully taken my chemo pills everyday, twice per day, for the past two months.

I am pleased to finally report that Team Sultaire is kicking some ass.

Yesterday I went to Mass General for my check up. I knew it would be a long and grueling day of testing/waiting/testing/waiting/lather/rinse/repeat. That being said Cory, my incredibly thoughtful boyfriend, took a vacation day to accompany me for the longest day ever (Yep, you read that correctly. Jess Sultaire bagged herself a handsome gentleman despite having cancer. Single cancer crushers- it can be done!). This day included the same exact tests as the very first baseline day prior to starting treatment.

We hopped in the car just before 6am and made it to my first appointment in Boston around 7:30am. The dreaded eye exam. It was a much better experience this time around for a few reasons. First, It was 7:30 in the morning, meaning fewer patients, meaning less waiting. I was dilated, numbed, and they performed that godawful eye pressure test. I knew what to expect this time so it didn’t take 40 tries to get poked in the pupil. The trick is to take a deep breath, look directly at it, and not clench your teeth (so basically go against all of your natural protective instincts). In the end I looked like a cartoon character with pupils the size of quarters but the good news is that my peepers looked normal and the drug has had no adverse effects on my vision.

Cory was basically my seeing eye dog as we walked a few blocks from the Ophthalmologist’s office to Mass General Hospital. We then had a full day that mostly consisted of waiting in exam or waiting rooms. For testing- I had blood tests, pre-dose and post-dose EKG’s, and an Echocardiogram. The tests themselves only take a few minutes BUT the day lasts forever because you can’t “dose” (take your chemo pills) until your blood tests come back. Labs can take 2-3 hours to come back. Once you get the okay to dose, you need to wait another hour after dosing to have your post-dose EKG.

Oh did I mention I have to fast through all of this?

Finally we were able to leave once Pharmacy refilled my study drug. Our visit clocked in at roughly 10 hours not including travel time. Considering there were no snafu’s this time the appointment itself could have been worse.

We met with my girl Stacey for a delicious dinner in Boston. Getting to catch up with her was a great motivator to make it through my marathon hospital day (although it wasn’t so hard having Cory as live entertainment). Unfortunately, after dinner I got very ill and remained sick throughout the night into today. I’ll spare you the details.

Ok, ok, enough of the play by-play. You guys want the details. What’s going on. Here it is:

My tumors have decreased in size by 5% according to my CT scan!

This is the kind of news that I needed to push me forward. It is a reminder that it is not all for nothing. This also means that I only require check ups in Boston ONCE per month!

My doctors, family, and I are very pleased with these results and hope to keep truckin’ along for as long as we have to. I will be sure to share any new details that unfold.

On a final fun note, I have a little pony now!:

Check out this time last year vs. this week

I would like to thank everyone that offered to accompany me to my doctor’s appointment on Wednesday. There were a lot of you! One offer was even out of state (but anyone that knows Lisa Bednarz knows she’s a thoughtfulness overachiever). The love and selflessness still astounds me. I am all set for Wednesday and know that physically and spiritually I will not be alone. GO TEAM.

I had a CT scan today at Women and Infants. I overnighted the disc to Mass General so their radiology department can take a look before Wednesday. If all goes according to plan I’ll have a clearer idea about what is going on inside my body. I’m hoping for some visible tumor shrinkage.

Will update next week. Have a beautiful weekend everyone!

It is hard to believe that I am 44 days into this trial. That is 264 chemo pills to be exact. In dealing with the side effects over the past few weeks I have said on multiple occasions that I just need a shred of evidence that this treatment is working so that I can “buy in”. 

Well, I am pleased to share that a small bit of information has surfaced. Yesterday I went to MGH in Boston for a check up and my doctor agreed that it would be suitable now to test my CA-125. FINALLY.  I received a call from MGH this morning:

CA125 on June 4th (Day 1 of the trial): 1228

CA125 on July 16th (Day 43 of the trial): 1096

My CA125 has come down 132 points in 43 days with an oral chemotherapy. Not too shabby.

The goal ultimately is to bring this number below 21 or as close to it as possible. We know this is possible because I did it once before. I recognize that I still have a long way to go but this is a better start than I had expected. I am scheduled to have a CT scan in Providence on Saturday morning. The CT scan will tell us more and hopefully I can share more good news next week.

I have been going to the majority of my doctor’s appointments alone by choice; however, I have one coming up on Wednesday (July 23rd) where I will need a side kick. It will be in Boston, very early in the morning, and last the better part of the day. If anyone is masochistic enough to volunteer for such a day please inquire within. I can repay you in the form of lunch and if you’re really lucky I’ll take you to the hospital gift shop. That place is like the effing Mall of America. 

To conclude, cheers to the first bit of good news.