Hi Brenda, You must have had a rough Thanksgiving...the not knowing, the hurry up & wait that seems unending w/a cancer dx, the pain/discomfort. From AJQ's most recent post/signature, it appears a low PCI re: peri mets. My BFF had rt-sided pain & discomfort...occasionally enough to take her breath away a few times. Her HIPEC scheduled for this coming week. I plan to report back of what I know from her experience. Anticipated low PCI @ this point as under 10. Apparently a peri met very close to her liver was a cause of this pain which was removed during laparoscopy to remove appendix.
Though this is scary stuff, you are doing a wonderful job self advocating, forward thinking a year ago into any possible options in anticipation of possibilities that may be thrown in your path. I commend you for that. You are located in an area in the country w/several HIPEC, well-known institutions to seek out expert opinions (insurance allowing of course). With cancer it is just never easy. Horrible way for anyone & their loved ones to live. Until you're told you have peri mets, you don't have them. I don't know how else to live day to day & keep one's sanity otherwise. Yes, of course you want to know what the heck is going on, causing your pain. Increasing CEA if a good marker for you can be an indicator for cancer, but also inflammation & your spleen is not a happy camper according to your post. Then there's also your onc's opinion...and then there is yours & that counts too.
My son & I joined my BFF & her DH (the one dx'd appendix cancer, DH dx'd prostate cancer) for Thanksgiving dinner @ a chain restaurant w/poor food & service, which we knew going in. We were tucked in a booth in the back near the kitchen...basically left alone. We all had other opportunities for Thanksgiving, but wanted to get together before her trip to UCSD for HIPEC. Spent 4 hrs there. She called the next day saying they so enjoyed our time...it was perfect, just perfect.
We've got 20+ years on you, however my DH was 47 @ dx of mCRC & I remember then a kindness, a gesture, offering of prayer meant so much. Hoping you have special people in your life to help carry you through these rough patches + you've got us here on Colon Talk to listen, lend support. Sometimes we find joy, an escape in the smallest/simplest of things if we look for it. And sometimes I can go crazy too in disbelief of the twists & turns life takes us...sometimes seemingly bordering on the ridiculous of how much people have to go through & how much can one take. Guilty as charged here. I have not walked your walk, but I have had to walk it with those I love as caregiver (as DD, DW, stepmom, BFF) & is from that experience from which I pull, hang around here on CT.
Let us know results of your upcoming PET. Is Black Friday or Cyber Monday a diversion for you?