Diagnosis Clarification: Journal Entry by Giga Romero — 12/17/20: I think my earlier post caused some confusion. While the colonoscopy did not find tumor activity in Frank’s colon, the original diagnosis of peritoneal carcinomatosis is still valid. This is a cancer of his abdomen. This type of cancer usually originates from somewhere else, which is why we have been trying to locate the primary source. It’s rare for this cancer to be a primary cancer, but not impossible. While we’re relieved it isn’t colon cancer, we still have a lot of questions about what this means for treatment plan as the original chemo regimen was specific to colon cancer. More to come, hopefully soon.
Not colon cancer.
Journal Entry by Giga Romero — 12/16/20:
Well, we are still trying to wrap our heads around this. No tumor activity found in the colon. Some hemorrhoids that could account for the bleeding maybe, but no tumor activity. They took a biopsy anyway, but… NO TUMOR ACTIVITY. So.. now what? Not sure where that puts us with anything, but we’re looking forward to touching base with the oncologist.
From Giga on 12/15/20:
Frank’s blood pressure is still low and lab results came back early this morning showing hemoglobin and hematocrit are decreasing. He received another unit of blood, they believe he’s still bleeding internally but don’t know where. I cancelled my car appointment, going to stick around for rounds to talk to the doctor about what comes next.
From Giga on 12/14/20: FINALLY. We have some answers. While not the best news, we at least have a goal to work toward.
Diagnosis: Based on PET scan, there is activity in the colon, so the doctor is as sure as can be without a colonoscopy and biopsy that Frank has stage 4 colon cancer. The PA had tossed around folfox as possible treatment a few weeks ago and scan results confirmed for her this is the right approach. He can’t have chemo while he is in his current condition, but she will get the “chemo teach” session and treatment scheduled as soon as he has a discharge date. We’ll also get access to the “bat phone” that puts us in direct touch with trauma team for questions and support. Sending messages through front-line operators has been an exercise in extreme frustration, especially today.
Nutrition: Frank has lost 35lbs since this all started, not being able to keep anything down has left him malnourished and dehydrated. They’ve pumped him full of fluids while admitted, and the dietician will be talking with the doctor about possibly getting him some IV nutrition if the nausea from the esophageal issues doesn’t improve quickly. He’s on a clear diet and they prefer for him to get his nutrients through food, but will be ready to step in if he can’t keep food down.
Car situation: I have some really amazing family and friends. Multiple offers came in for the use of spare cars, and I love you all for reaching out! I usually just need to get angry enough to act, and I did. I am not entirely proud of my Karen tendencies, but will use them when I need to. I was able to make contact with the executive team at Nissan, and as expected, they delegated to an escalation contact that I’ll be able to plead our case with directly instead of trying to work through the first tier phone support. We’ll be touching base tomorrow about anything they can do to help us out with the Nissan. I also have a 7am appt with the mechanic that did the work on my other car, they’ll get it onto a lift and look for what is causing the burning smell after their repairs.
Today was a day of extreme frustration, but then very small, but yet very significant break-throughs. All of your messages and support keep us both going. Thank you for your prayers, messages, meal drop offs, offers to help in unbelievable ways. We love you all.