So, here is the latest.
What a long week and half!!! I don't know what has been the most difficult: the drama during surgery regarding the conflicting decisions about the pump between the oncologist and surgeon (a story yet to be told), the last minute change of plans with a friend leaving me in a lurch (she was supposed to help me on the day of his discharge), my brakes going on the way out of the hospital to where we were staying in CT, getting an important phone call from the media in the middle of discharge (thank goodness the story turned out rather well), or planning this coming Wednesday's appointments. I honestly don't know how I got through the past nine days without completely breaking down. Thank god for family and friends. I could not have done it without them.
So, there was an appointment for a CT scan on the MSK portal that did not make sense to me as CT scans do not accurately show spots in his liver. Dr. Kemeny's office, when I asked about this appointment, seeking clarification about it, blurted back through the portal: "The CT scan is a baseline scan. It is required after surgery and yes you will get filled." Nothing about needing to view his chest or anything and sounded routine for the average patient (CTs being the norm for most stage IV colon cancer patients, except in people such as Michael for whom liver lesions cannot be seen in CT). As CT is only good for him when the chest needs to be analyzed, I wrote back reminding them that it was inappropriate in his case due to his habitus, except for surveillance of the chest. They deleted the appointment.
This morning, I saw that the report from Tuesday's flow scan test was uploaded to the portal last night. It says that he has new bilateral small pleural effusions and compressive atelectasis (collapsed lung). Apparently, according to my Dr. Googling, this is very common in very high BMI people who had upper abdominal surgery. Breathing and coughing exercises help resolve this, although no one had mentioned any of this at all to us.
I hand delivered his ECGs from day of surgery and day after to his local cardiologist yesterday (their fax was not working) with the plan to follow up with him on Monday. My husband and I spoke last night about how he had left his follow-up appointment with him unscheduled for the time being, so perhaps one is warranted in this case. Now that I have this information about the pleural effusions and compressive atelectasis, I think so. He (local cardiologist) can order a chest CT if necessary, thus avoiding the issue of dealing with MSK CT appointments. They are ALWAYS many hours behind at the Manhattan location at which they scheduled him.
It would have been nice if his MSK cardiologist responded to my inquiry on Thursday: "Given the fact that this post liver surgery ECG is abnormal, should we have a follow up ECG done by *****’s local cardiologist?" She had insisted, against the surgeon's wishes, that they do intraoperative/perioperative ECG monitoring (monitor put into his left arm artery, bruising him all up something fierce) to make sure his heart was OK during and immediately after surgery, but I guess that is where her responsibility ends. Who oversees his cardiopulmonary issues now?
No idea. I know that our local hospital blood lab will do blood draws on "foreign" orders, e.g. from MSK, so I am now wondering if local radiology department will do the same. Will be a very busy Monday.
I don't think anyone has a clue what we are dealing with. It's extraordinarily difficult being far away from MSK, with a doctor there whose time is scarce and communication abysmally poor, combined with a local primary care doctor whose office doesn't want "to step on toes" or put in orders for things "that specialists take care of." No one is overseeing my husband's care but me, so I HAVE to ask questions. I don't care if I seem like a bitch. This is my husband's life in my hands.
Last edited by mpbser
on Sat Mar 16, 2019 12:00 pm, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 - Lap left
5 x 4 x 1 cm
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
Lynch no; KRAS wild
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 met in liver
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death