Chemo #13 (final-ish chemo) and updates

Most of you already know this, but Tom is literally the most impatient person I've ever met *sigh* 
I have a lovely picture of him with his swag of what we hope is he's final chemo treatment (see below).  However, he couldn't wait for me to get this written tonight and posted his certificate while I was at work today.  Last night, I had a late work meeting and he was worn down...onto the updates 😀

His weight was down slightly--however overall stable still--he's been hovering between 143-149lbs for the past 2 months.  While certainly low, he's weight has pretty well plateaued.  His lab work overall looked really good and his potassium that has been low the last 2 times was actually on the high end of normal, so we are reducing his supplement.  The CA 19-9 continues to drop slightly...but no more big drops.  It's currently at 157 (last time was 169) Still elevated as normal is under 35 but we don't know what the surgeon will think about it.  

His "final" chemo was also a bit different than the rest he's received.  He's been getting Folfirinox which is a combo of 4 meds (leucovorin, irinotecan, oxaliplatin, and fluorouracil/5 FU)  After his previous chemo, he's noticed some shooting type pains in his legs from his knees to his feet--when sharing this with the oncology team, we learned that it's actually related to a neuropathy side effect from when he's moving his head.  But he just hadn't connected the 2 yet--the shooting sensation to nodding his head yes (chin to chest quickly) So they quickly pulled the oxaliplatin which is the primary culprit of the neuropathy, cold sensitivity, and a lot of other side effects because of the risk of permanent nerve damage.  

Thus our last session only took about 4.5 hours on site instead or 6-7 it typically takes.  While we both have concerns about the impact on cancer death/growth suppression, we definitely didn't want to risk permanent damage if we can avoid it as well.  It's also made this "final" round of chemo a little easier on Tom.  Besides the cold sensitivity, the oxaliplatin apparently was the medication responsible for the limited spice and a contributing factor to his lack of appetite.  He's still pretty fatigued, but has been able to eat better immediately following chemo, which has never happened.  They all have loss of appetite but 3 is better than 4. 

We head up to Mayo next week for additional follow up with their teams.  We have blood work, CT scans, and an appointment with the surgeon one day.  Then a PET scan and abdominal washing checking for metastasis later in the week.  We are hopeful to have plan for radiation and then future surgery after we receive scans and washing results.  In the event they want to do additional chemo now or in the future--there is a potential they'll need to continue the regimen without the oxaliplatin or change to a version that only uses 2 medications (gemcitabine/nab-paclitaxe).

They did give Tom the option to do the "final" chemo package or wait until we have confirmation he's actually DONE.  In true married people fashion--he immediately said "yes and he was done after doing this shit for 6 months".  I was like "seriously?!?  I'd totally wait to be sure and we don't have to do more." Clearly I let him make his own choice though 😂

It's crazy to think we've been doing this a full 6 months as it often feels like forever, while just recently at the same time.  This journey has definitely shifted our perspectives and helped us learn about a lot of things.  We continue to be incredible grateful for all your love and support as we navigate our new normal on a daily basis.  

All our love, Tom, Steph, Vivan, and Scarlett 
(Murphy and Millie) 🐶