Welcome to our new support site! I learned about this site from a fellow Stage 4 Mama. Adam and I are hopeful this can streamline some of the support we need right now. This site has a meal registry, ways to help with our kiddos, and we can add any other specific requests like house chores, etc. Our to-do list (as you will soon read) is ever-growing and we feel really overwhelmed with life right now.

Shitty stuff first - the last two infusions wiped me OUT. There isn't enough research on Trodelvy to know if it's for certain a "cumulative" chemo (i.e. one that gets harder over time, like AC/"the red devil") or not but it sure feels that way. The other theory is that my life is busy and being stage 4 is stressful af, which gives my body less capacity to tolerate it. All I know is, this shit sucks. The dry skin is becoming embarrassing- my makeup just sloughs off, my chest and arm look like a peeling sunburn for several days after chemo, and tons of skin tags have cropped up. Both my Oncologist and Dermatologist (finally got in to her after 6 months of waiting) both looked at me like 🤷‍♀️ "Put on some good lotion and good luck to ya." 😐 While I was with my Derm, we also did my annual mole check because skin cancer is a very common secondary cancer to breast cancer - fun! She biopsied one mole and I am awaiting results of that. Please, Universe, let this be benign.

Another lingering issue is hearing loss. It was confirmed with the ENT & Audiologist that I have "conductive hearing loss" which essentially means the hearing loss is stemming from fluid build up that prevents the ear drum from moving and allowing sound waves through. The fluid buildup came from a combo of the severe allergies I've had since we moved, and everything being soooo dry and congested and swollen. Ugh! I did 4 weeks of a new nasal spray, and my nose and sinuses feel clearer than ever, but the hearing loss did not improve. We are going to do 6 more weeks of that additional nasal spray and then retest. 

I have also had this awful muscle spasm in my chest wall, going on 6 weeks now. I've been doing all the PT stretches, chiropractor twice a week, massage, heat/ice, and nothing has helped. It's incredibly painful and a huge hindrance in life, as it radiates pain into my shoulder and neck, and down my arm. We will be scanning it again at my next scan, but we really scoured my previous scan and it didn't look like cancer at that time. It hasn't grown, just hasn't gotten smaller either. My Oncologist asked if I wanted to try PT and I immediately yelled "NO!" while channeling my inner 3 year old and stomping my feet. Okay maybe not *that* far, but I did tell him no. I cannot add more appointments to my schedule.

In the one month since my last update, I did 5 radiation sessions, 10 chiropractic appointments, a massage, a Dermatology appointment, two ENT appointments, two chemo infusions, and two therapy sessions, all while bringing Callie to summer dance, Geno to hockey, trying to work full time, and try and get these mf house projects done, as well as wrapping up Adam's parents' affairs and their house. I literally have had two days in this time frame with nothing scheduled, and both those days went to trying to keep up on house chores and take a nap to recover from chemo, make all the phone calls/follow up to coordinate all these appointments because God forbid doctors consult with one another. I just don't know how else to minimize things. It's truly exhausting. 

The other side effects have been increased GI upset, decreased appetite, and more fatigue & brain fog (gee, wonder why 😅). I'm trying to manage all the things and avoid any further need for prescriptions and appointments with specialists. I'm just feeling incredibly worn down by the medical system and the idea of doing this indefinitely. Today is infusion #15 and when I first did chemo in 2022, I "only" had 16 infusions and then was done. It feels really hard to keep going. I'm going to - and, it's hard. 

In between all that nonsense, we have found time to have fun and make some really good memories with our kids. We bought a boat! It's been soooo much fun. We've been spending time with family, making some new friends in the neighborhood, and trying to have some normal moments amidst the chaos. For all the ups and downs and exhaustion we feel, we're really trying to prioritize time with our family and making memories. On the days I'm feeling unwell, we do movie nights on the deck. On the days I'm feeling more active, we get out & about. It's a really tricky balancing act that I don't think will ever feel quite normal, but we sure are getting good at riding that wave!

To help with this balance, I have opted to change my infusion days. For a long while, I've done infusions on Thursdays or Fridays, to avoid missing work as much as possible. The trade-off was missing out on weekends with my kids because those were my "worst" days and often spend in bed. As time has gone on, I am missing those weekends more and more. I am going to slowly move over to Tuesday infusions, every other week, and I will work from home before & after my infusions, and then my "off" day at work will remain Thursdays so I can truly rest while our kids are at school, and hopefully feel better by the weekends! This transition is slow going because I can't jump days in one go - have to move to a Friday and then to a Monday and then to Tuesdays. Fine, fine, I will practice being patient 🙄😂

All in all, we are still moving along in this cancerous journey of fuckery. Things are stable as they can be in these circumstances and I will continue turning my mind toward accepting the reality of out lives now, continue trying to find ways to care for myself, and continue making all the memories and living each day fully. 

Thank you all for the ongoing love and support!! 
🩷 Elizabeth