So this wasn’t my best week. In light of the events in Boston, I don’t think this was anyone’s best week. I should first start by stating how impressed I am by the police, SWAT teams, and basically any one else that put their lives on the lines to ensure that the city of Boston was safe. Thank you to those that sacrificed their safety for the safety of others. I am taking a big sigh of relief knowing that my friends and loved ones in Boston and surrounding towns are unharmed. My heart truly goes out to those that were not so lucky. They will never be forgotten.
So as I started to say, this was not my best week. I pictured my last round of chemo going a lot differently. I was just so damn certain that my CA 125 levels would have dropped below 21 by now and I would be more at peace where where I stand prior to moving on to this next chapter of my journey.
Again, my nurses stressed to me that the CA 125 is just a small piece of the picture and that the jump was not high enough to be alarmed at this time. If it doubles or triples or continues on an upward trend, that’s when we should start to worry. I want to make it clear that I trust and believe my medical team. I’m not trying to make a mountain out of a mull hill. I guess what is hard really grasp unless you are going through this first hand is the lingering fears that bubble up unexpectedly when set backs like this occur. This is a journey that is long, drawn out, painful physically/emotionally, it requires extensive short and longterm sacrifices, and constantly challenges your faith. So when a set back occurs, even a minor set back, the thought of possibly having to experience one more ounce of pain a second longer than you have to can really knock the piss out of you.
Thursday sucked so I did what I always do…just carried on. I somehow channeled the energy to go to the gym and put in a serious workout. It felt great to blow off some steam.
Friday didn’t start off much better than Thursday. Back to the infusion center for another treatment. Luckily, this was my last scheduled infusion of Cisplatin (thank the lord!!!). I have a love/hate relationship with Cisplatin. I love it because it is bathing my guts in poison so I don’t die BUT it destroys my body for days after each infusion. This is my longest of the three infusions per cycle and I am typically done within about 5 1/2 to 6 hours. I have absolutely no idea why, maybe my drip was set slower than it normally is but this infusion lasted 9 hours. I was in that damn chair from 9am until just about 6pm. What made it even more intolerable was the acid reflux that it caused. This is partially my fault because I don’t take my acid reflux medication daily (as it impacts bone density which is not looking so good for me either). I try to take it as needed now that I don’t experience it so often since they initially drained all of that tumor fluid from my abdomen. Regardless my chest was in a fiery hell for the last 5 hours of the infusion and I just wanted to go home and go to bed (especially since the steroids from the day before had kept me up almost all night the night before). Needless to say I was kind of a curmudgeon toward the end of the day. A HUGEEEE thank you goes out to Jen for staying with me in the morning an another giant thank you goes out to Susan for picking me up and waiting with me all of those hours that we did not expect to be there.
One highlight of my day was an unexpected visitor during chemo, Dr. Erin Greenberg! Just as a recap, Dr. Greenberg was on my team during my 10 day stint for the bowel obstruction. She also caused the most traumatic experience of my life- getting an NG tube shoved down my nose while I was awake (Sorry Erin! I know you still feel guilty about that). Despite the “NG Trauma”, Erin was amazing the entire time I was there. We honestly became friends and lord only knows that I needed a friend during that awful experience. Erin would come off of long shifts and hang out in my room for an hour or even longer every single day to talk. She constantly reassured me, made me feel comfortable, and helped to take my mind off of the madness that was this hospital stay. I hadn’t seen her since I left the hospital at the end of February so when I saw her walk into the infusion center I nearly jumped out of my recliner. I was thrilled! I guess yesterday wasn’t all bad.
I came home and passed out for a few hours. John and Brian had planned a “Jock Jams” themed party that I was really looking forward to going to. I LOVE theme parties. Come hell or high water I was going to be there whether that be for 30 minutes or all night. So I peeled myself out of bed, put on my ridiculous neon workout outfit and headed over. I must have gotten a second wind because despite not feeling great I was able to enjoy myself with my friends. Must have been all of the awesome people I was surrounded by 🙂
Here are a few highlights (ok maybe more than a few- so sue me):
(Just to point out my commitment to this theme: Please note my matching tube socks, full on neon, light up bicycle pin, and YES that is a bright yellow fanny pack)
Despite not being in college anymore, drinking like a gallon of water instead of booze, and coming off of 9 hours of chemo- I think this party was a success (more like my ability to survive anything outside of my bed was a success). l am SO happy that I got to end this shitty week by dressing up like fools with with some of the greatest people I know.
Special thanks to our handsome hosts, my Providence brothers- John & Brian
To top off a great night, there was present waiting for me at the party:
John’s parents read my last blog post and sent me 21 daffodils as a reminder of how close I am to that magic number. Thank you for the encouragement Mr. & Mrs. Galiney! That was incredibly thoughtful.
Since I definitely pushed my limits last night I am taking the entirety of today and tomorrow to do absolutely nothing because I feel like I was hit by a truck. Let the Cisplatin side effects begin…
I know that this has been a really tough week for you,but I also know from the bottom of my heart that you are way more tougher then the hand you were delt.I love you so very much, fight on.
Jess – sounds like you’re beating this thing in more ways than one! Attitude on top of poison! Whoo Hooo! I know the fear that “aftercare” brings and will be honest that it doesn’t totally go away. So….I won’t be one who drops off your support team just because chemo is done. When you hear the “no signs of disease” we will rejoice and you will move on to the rest of life along with this amazing network of family, friends, and strangers who are following the bold bald battle. Hey, the bald part is almost over! The boldness is for life. Let the battle rage on! Thanks for the Colbert link. We are all “Boston Strong”.
I hope the Cysplatin side effects are on their way OUT!!! We are on the home stretch. Continue to BELIEVE , BELIEVE , BELIEVE… You are so close!
Jess you bring tears to my eyes at the bravery, strength and courage you have shown throughout this whole ordeal. You my dear, with your amazing attitude and fight, will come through this large, crappy bump in the road even more stronger. Yes, You are Jess Strong! And enjoy the baldness, (it’s so much easier anyway) and you are truly beautiful. Love you! Jane Barillaro. smooch.
Hope your next week is better! 🙂