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.
Jess, so glad to hear about your great week! You are amazing!
Jessie, I pray for more good days, for continued success stories, for the pain to end. Just keep on your lovely toes, you look amazing in that dress for the wedding! Love you!!
Jess, thank you for sharing the,”surprise chemo,”pictures of Cory and your girlfriends. I wish you a much better New Year!
Happy days! Have a great walk for NOCC.
Chemocation…Love it! I swear you should copyright that word!!! HONESTLY 🙂 x0x0