Round Three this Week

It’s June 1st? What? The amount of life change that has happened in my little world since April 15th is simply head spinning. 😵‍💫 I’m here. I’m fighting and I’m now armed with experience from rounds one and two of this incredibly aggressive treatment plan. I thought it would be helpful for my family/friends to see a plan on a page, especially those helping me get through my day to day life managing this chaos. As you can see if you’ve been reading my posts, I am NOT alone in this and it’s not for the faint of heart.

Here is a recap of what’s going on this week in writing with a little illustration I built because you know how I love building my Gemini infographics;)

Monday, June 1:

9am: Dr Richter for Dentist Appt to make sure I don’t have more going on related to the “bump” on my jawline.

12pm: Northwest Cancer Center for Labs and my weekly appt with Dr. Sidani. Provided all is good, We proceed with next round of chemo Wednesday.

Tuesday, June 2:
Waiting on consult for Oncology Rehabilitation, targeting this day, waiting on confirmation

Wednesday, June 3:
9:00am: Northwest Cancer Centers for CHEMO ROUND THREE 🥊 - this will start with SEVEN hours in the infusion center chair and then at 4pm the will attach my “little friend” aka the 5-FU pump that will drip and run FORTY SIX HOURS with me Wednesday night, all day and night Thursday and most of Friday Morning.

Side Effects: Severe sensitivity to cold exposure- no ice, no cold water, no cold drinks, wear gloves if getting something from fridge, etc. Hair loss, mouth and gum sensitivity with possible mouth sores, fatigue, night cold sweat soaks

Thursday, June 4:
10:45am Powers Health Lab for Soft Tissue Ultrasound of Head and Neck, this is a follow up order Dr. Alavi, my endocrinologist after seeing activity on PET scan in my thyroid area. This, along with XRAYs of my neck/jaw Monday should help with analysis of all things going on above chest.
Side Effects: Possible fluid retention/edema, severe sensitivity to cold exposure, hair loss, mouth and gum sensitivity with possible mouth sores, fatigue, night cold sweat soaks

Friday, June 5:
1:00 pm Northwest Cancer Centers, pump removal day
2:00 pm Infusion for fluids
Side Effects: severe sensitivity to cold exposure, fatigue, edema, Hair loss, mouth and gum sensitivity with possible mouth sores, likely constipation from pain meds, night cold sweat soaks.

Anticipated Recovery & Side Effect Timeline based on first two rounds:

Saturday, June 6:
Fatigue moves to exhaustion, sleeping most of day
Cold sensitivity
Possible Diarrhea
Loss of Appetite
Hair Loss
Day or night cold sweat soaks - aligns with sleep cycles.

Sunday, June 7:
Exhaustion, sleeping most of day
Likely Diarrhea
Loss of Appetite
Hair Loss
Day or night cold sweat soaks - aligns with sleep cycles.

Monday, June 8:
Nausea will start subtlety, must be prudent with Zofran and all nausea drugs
Likely diarrhea
Cold exposure risk starts to subside slightly
Definitely loss of appetite and will be sensitive to even look at food.
Day or night cold sweat soaks - aligns with sleep cycles.

Tuesday, June 9:
Nausea stronger, Zofran and other breakthrough nausea drugs should be taken around the clock

Wednesday, June 10:
Either vomiting or not, was I as successful like round two or did I break like round one?
1:15pm Northwest Cancer Centers Hydration Infusions for two hours

June 11-15:
“Good Day” Anticipated
Labs, Dr. Appts, Next Round Planning

Questions I’ve been receiving:
Q: How many rounds will you get?
A: No defined number, this could go on for months BUT will depend on results

Q: When will you be retested?
A: Plan today is to complete full four or even five rounds before new CT and PET to really let chemo and targeted therapy do its work and not prematurely test.

Q: Will you have surgery?
A: Unclear until the systematic treatment impact is evaluated. First goal is to stop rapid growth of lesions in liver which is the source of all of my pain and is showing the most aggressive activity. Remember the goal of the mFOLFIRINFOX with the added targeted therapy is to treat my whole system which includes anything everywhere in body.

Q: What is the prognosis?
A: No physician has said “you have x number of months/years to live” I am here to win not lose. My ask is to skip this question with me or any cancer patient in active treatment. We as patients have already been obsessing over this and it’s just no one’s role to predict when someone lives or dies.

Q: What can I do for you?
A: Keep praying if this is part of what you believe, keep leaving me messages on this site. Keep reminding me you haven’t forgotten about me. My life has completely changed; I’m dependent versus independent for the first time in 50 years (yeah I was even independent at five years old in my own way which checks out;)

You’ve read my schedule, analysis, my anticipated side effects and predicted timing. You know I’ll be giving myself a grade on how close I got with the limited data coming from two very different rounds of treatment thus far and will report back in a future post.

Happy June 1st y’all. Hug your friends, tell everyone you love that you love them. Notice the birds, go outside for vitamin D. Get your colonoscopies and your annual bloodwork. Get inspired to update or get a will/estate plan. Make hard shit fun with infographics.

Love to all- GoGo ☀️ ❤️