Hello,
(Sorry in advance for potential language problems, not a native English speaker.)
Before I start telling mom's story, I want to thank everyone who took the time to share their stories and took care of each other. I have been reading every single thing I can on colon cancer since the day I started worrying that mom might have it and I brought myself to the point of going completely insane. Finding this forum helped immensely. Thank you all.
I've moved abroad 2,5 years ago to do a PhD and this December, my mom (62) was hospitalized for stomach pain (which she mistook for gas or having caught a cold) and vomiting on Dec 14. After vomiting, she went to the ER. They did a CT Scan and a blood count. She had bowel thickening at the sigmoid section and some swollen lymph nodes as well as high CRP (38.9), high WBC (15,64), high Neutrophil% (87%), low Lymphosit% (9%), high Neutrophil (13,60), and low MPV (9,50). Their diagnosis was diverticulitis; she stayed in the hospital for 6 days and they treated her with antibiotics. Her liver looked normal. She took two strong ones for about 20 days, and during this period her CRP levels reached as high as 223, but then got lower. They let her go home on Dec 20, with a follow up on Dec 27, and Jan 4. On Jan 4, she got another CT and a blood count. CT Scan showed that there was no change in her bowel wall or her lymph nodes. Additionally, there was "an 8mm hypodense lesion that held peripheral contrast" (not sure if this is the proper way to translate it). Her blood count was better overall; high CRP (18,1), high PTL-Trombosit (527), and low MPV (9,40).
I got back home on Dec 27th as scheduled for the winter break. I missed her first follow up, but was there for the one on Jan 4. I didn't like the general surgeon or the gastroenterologist at this first hospital, so I found another gastroenterologist for her colonoscopy. I've read her reports and one of them mentioned "Colon Ca." I will never forget that moment. I've read pretty much anything written on diagnosis differentials on CRC and diverticulitis. Her lymph nodes suggested CRC. She got a colonoscopy on Jan 8, which confirmed CRC. Her doctor came out and told me to sit down before he gave me the news. I will never forget that moment either. He told me that "it doesn't look like it has metastasized to other regions." But he had also told me that her clinical situation doesn't look like CRC either when we talked on the phone before colonoscopy, so I wasn't relieved. He said he didn't think much of the liver lesion since cancer doesn't really work that way. He referred us to a general surgeon, who was just that--so I found her a colorectal surgeon. The biopsies they took came out as moderately differentiated adenocarcinoma and MSS.
This new doctor said her lungs were not examined really, so she got a Thorax CT and an upper abdomen MRI. Thorax CT report said that they saw some infection in her lungs and a 6.5 mm subsolid nodule. I've stopped reading her reports after seeing her Thorax report, because I was losing it. So all the other information I got after that point is what I heard from her surgeon. After he got the MRI report, he said that they "did not observe anything that should change our operation plans." She was seen by a lung specialist before surgery to get a check for surgery, and was told to come back 3 months later for that nodule in her lungs.
The colorectal surgeon also said that they saw another lesion in her liver (he used the word "superficial") of a similar size (I'm guessing in the MRI?) and that it looked like they could take both of those liver lesions during surgery. But before surgery, he said he was planning on doing a laparoscopy and his primary goal was to take the tumorous parts of the bowel out and that he would not turn it into an open surgery to operate on the liver as well. Her surgery took about 5 hours, he removed the tumorous parts of the bowel along with "lots of" lymph nodes and he also had to remove the left parts of the ovary because tumor had "stuck" to those parts as well. He also asked our permission to add a port for chemo, which we confirmed. He said that he didn't touch the liver; there was a third lesion and it was bigger. He said that she'll get chemo, then they'll try to ablate them, or she might have to get another surgery. Now the thing with Turkish is that it's not clear whether "might have to get another surgery" means "if she's lucky, her lesions will shrink and she might get it," or "we anticipate chemo to solve this, but it might not so we'll see." I remember him mentioning about the necessity to move a part of the liver, but it's all vague. And I'm terrified to ask.
A sidenote on this surgeon: he's terrific in his job, but socially, he's absolutely terrible. I'm ready to hate everyone right now, and even with this state of mind, I can tell that he's not trying to be mean or rude. He's just not very sociable or empathetic. Every time I ask him a question, he gives a cold, simply factual answer and I do not know what to make of them. For example, when mom told him that she was worried about coughing post-surgery because of her fear of messing with her stitches, he told her she can cough. Mom said they hurt and they feel like they're tearing up. I said "she's asking if you did a tight job!" to which he could've easily respond with "hell yeah." Instead, he said "we'll stitch them back up, don't worry about it." He sincerely seemed to think that that was the helpful thing to say. Long story short, he's not very responsive to questions and I cannot read him at all. For her oncologist, we had two options and we chose the one several people had recommended. Both oncologists suggested my mom to get a port. We will meet with her oncologist two weeks after her surgery--haven't met her yet.
Right now, we're still at the hospital. She had her surgery 2 days ago (~52 hours). Yesterday, she walked and consumed liquids. Today she ate solid food, pooped a little, and can walk on her own, although slowly. She's not very happy about the lung exercise balls (don't know what they're called; you're supposed to send 3 balls in tubes up and down by inhaling and exhaling), but she's trying upon some nagging. I'm so proud of her.
But... I'm also scared to death. I'm scared of losing her. I'm scared of seeing her suffer so much that I will get to a point where I will be OK with letting her go. She has always been a very kind person, sometimes to the point of being a complete people pleaser for her family. I can feel her stress about being a burden. She's not. Nothing is worse than not having her. I'm constantly cheery, attentive, and motivated, which I feel is helping. But I'm so scared that she will give up because she will think that she's stopping me from living my life. Except, she is my life. I was initially going to come back to Turkey to do my fieldwork this summer and stay here for 2 years. After finding out about her diagnosis, I took a leave of absence for this semester. It didn't change much for me, but I can tell that it's eating her up. I will try to do my best to have a life in addition to taking care of her once we know everything and have a game plan. But I don't know how to approach her fear of being a burden. I do not let everyone into her room (she has LOTS of visitors) because it's flu season--I ask people to not approach her too closely. Even that upsets her. She thinks it will upset people ("they came all the way to see me, it would be rude") and feels uncomfortable. I don't know what to do. I do think that this is a bit of a cultural thing, but any advice is welcome.
This post ended up being a bit long. Even though I'm surrounded by family and my partner, I feel desperately lonely. I'm tired of constantly trying to explain things to people who do not share my newly gained vocabulary or my heart ache. Thanks for reading.