Reflecting on Insights from My First and Second Treatments
- May 27
- 5 min read
Just 9 days in to starting treatment, its not even been 30 days since discovering the news. After completing my first infusion and receiving my second yesterday, here's my experience to help understand how things are as they are happening.
How I Felt After the First Treatment
After that first infusion, and the drunken toddler woozy feeling as I left the chemo center with my brother and driver, it had lasted through the night but felt pretty good the next day! I even drove home! I haven't felt a bit of nausea all week and didn't take the additional anti-nausea they prescribed me at home. Like a newborn, I am eating small meals every 2 hours, with a major focus on protein content and hydration.
I made sure to rest and hydrate well, and was sure to see good to see family and friends through the weekend! Tracking how I felt each day gave me useful insights to share with a doctor check-in update I had on the 22nd. I didn't learn as much comprehesively in the appt as I had hoped, so I'll reserve sharing for now. I will maybe have more after I meet with a surgeon consult early June in San Francisco.
Keep those prayers and energies flowing for me!
Second Infusion on Tuesday, May 26th
My girlfriend Amanda come all the way down from Truckee, and spend the night, and hauled me all the way to the Cancer center and back home yesterday, It was not only a treat to visit, but also got invited to dinner at another friends and get to see everyone. I certainly wish I could have stayed longer! I am learning my physical energy is like currency, and there are moments it runs out quickly.
I thought this treatment would be shorter, like 4 hours instead of the full 7 hours it was last time.... I only had the Cis-Gem, and no Durv this time as it's only every 28 days on the treatment cycle. My labs check showed a dip in Potassium, and as low as the administered volume of Potassium infused was, it took two hours because they have to do it slowly, it can sting, and its thick. They knew the Potassium had dropped, as a full blood panel to check my blood count, immunity and liver functions, etc are measured every single time before each infusion. I am grateful for that close monitoring... so I was there yesterday a whole 6 hrs, 45 min! Gah! I literally was the last one out last night! Not the kind of party I try to shut down because I am having so much fun!
Low Potassium: I felt weakness, fatigue doing simple tasks, I thought these feelings were just part of the treatment! https://www.webmd.com/diet/foods-rich-in-potassium
Amanda was able to drop me off, and handled business and errands nearby, and Lexi in town brought me a feast and beautiful peonies from Trader Joe's! I can have one visitor at a time but when Lexi brought back farm fresh eggs for us both, we were able to get a snap!
I was feeling much less woozy than last time, thank you Potassium! I theoretically could have driven home, but without knowing how I feel after the treatment, I am playing it safe!
I am actively infusing in these pics, I might be attached to a long skiny pole, but I can get up, walk around, and stretch.
Learnings This Week
I am going about this with as much positivity, live normally, and exude extra participation as much as possible, for as long as possible. I am also accepting as much help as I can along the way. Positivity can lean towards greater longevity, and I don't want to look or feel like the patient as much as possible! I certainly didn't ask for this craziness, but will navigate the best-bestest way possible!
However, there are some learnings for me even in the first week. I definately have a bad case of the FOMO (Fear-Of-Missing-Out!!) I was even out and about for Memorial Day.... Saturday, Sunday for the day, and Monday night too!
Saturday night at my friend Stephanie's house concert, and even had a driver for that! I took chairs, and enjoyed the nice summer like evening and music under the stars.
On Sunday my family and I scheduled to get together. We went to the newest Star Wars movie, the seats reclined in the theater, and went home for BBQ and an Ikedas pie! Dinner was really tough to break the news, as many family and friends are still learning this week the official news. Together time is paramount and priority for me right now and am so grateful for my family to have made and hosted a really nice day together and good BBQ!
On Monday I made it to a friends Memorial day dinner with my closest local friends, and about half way through, I felt the wozzy fade coming on. We had an excellently prepared dinner. There's food currency going on, but I also learned my physical currency was in short supply and headed out more quickly by 9 p.m. with an infusion the next day and my very willing courier service to get me there!
I learned a lot this week, I am grateful how well I am feelng just so far. I expected to be nauseous and unable to climb off the sofa. Instead, I have my appetite, and had a very full Memorial day weekend! I had amazing help and lunch feast on Infusion day, and that time together is so special too and certainly not as fun!
I am SO grateful and humbled, and as the summer social calendar wants to quickly fill up, however I am seeing a call to balance myself a tad more. My FOMO toddler self stamps her feet and crosses her arms, but also know I need to think of re-calculating the social invitations with careful self awareness measuring even against every fiber of myself wanting to do it ALL. Know if I pivot at any time, or decline, I will balance a full life to lived, and also give myself the best chance to survive.
I absolutely will be doing everything I can with my energy and wellness taking more priority as I navigate this journey, and that's my very best promise to you.
Looking Ahead:
With two infusions behind me, I now feel more prepared for each treatment ahead and even hopeful I will continue to feel this relatively good! I haven't managed to be bored yet! I had these two infusions, a week after the other, I now get a week off! My next infusion set isn't until June 9th and 16th!
Each treatment is a step toward better health and healing, and I am committed to staying informed and proactive.
