I'm brand new to this, supporting my 48 yo husband with a new diagnosis of colon cancer. Any and all help, well-wishes, advice, and support is welcome.
Fri 10/19/18[/b] My 42nd birthday, a Friday, hubby starts to get a belly ache.
Sat 10/20/18 Urgent care, misdiagnosed as H.Pylori, gave him antibiotics & sent him home.
Tue 10/23/18 Saw primary care provider at Indian Health- told him to keep taking antibiotics, added iron pills for anemia. Ordered a stool sample.
Thurs 10/25/2018 Came to drop off stool sample at Indian Health, belly now extremely distended. DH stumbled into my office (I work as a psychotherapist in a building next to the clinic), and I rushed him to the emergency room. CT scan showed large tumor in his colon, complete bowel blockage. Immediate surgery needed for a colostemy. Surgeon comes in after the surgery, 10pm, devastated, says cancer is incurable, inoperable, discourages chemotherapy, discouraging all around. He apologizes, nearly crying. Says the tumor was so fixed to the pelvis, the bladder, that nothing would move it. Next couple days, dealing with the colostemy and his bowel cleaning out, nurses don't know how to change a colostemy bags. There was poop everywhere.
11/5/2018 New surgery for a new colostemy- the old one is sunken in and doesn't want to work- can't keep a bag on, keeps leaking. Another surgery, does better.
Now hubby is home. I worry because he gets skinnier and skinnier, he is pale, weak, tired. I mostly change his ostemy bag, etc. Some home health, but not much. His incision infected, burst during physical therapy. Now I'm repacking it with iodine tape daily.
We finally got an appointment at Huntsman Cancer Center yesterday. The surgeon is a professor, teaches and a colorectal specialist. No metastasis to lungs or liver! He wants a new CT scan. He thinks we might see a different picture without the distended bowels. Very hopeful compared to the first surgeon (just a small-town general surgeon). I called the old surgeon- he said, "Well if anyone thinks they can operate on that tumor, I want to talk to them first. They don't know what it looks like on the inside." New surgeon says if the tumor truly can't be operated on, they will try to shrink it with chemotherapy before operating.
So not sure who to listen to.
I worry about DH, he is so thin and pale. I am used to him being strong and capable- superman.
We were in the middle of adopting two babies from the foster care system, to add to our 4 children (2 mine, 2 ours). One of the babies already had to be transferred to another home, the other baby we will proceed with the adoption.
I can't concentrate at work. My work is falling behind, but I'm the only one who will be able to support the family now. The pressure is getting to me. I cry every day at work. Some days it feels like there is no hope. Some days are better. I try to explain things to the kids, who are strong and resilient.
Last edited by melissadc76
on Mon Dec 31, 2018 10:49 am, edited 1 time in total.
Caregiver to my DH (48 yo)
5 kids (2 mine 21 & 16, 2 ours 11 & 10, 1 adopting 2)
Dx Sigmoid Adenocarcinoma 10/25/2018
No staging yet, told "Inoperable" and "about the size of an orange"
Emerg Colostomy bowel block 10/25/2018
New colostomy surgery 11/5/2018 (new placement of original botched placement?)
CT scans of lungs and liver look "clear"
Huntsman Cancer Institute surgery consult
Tx Plan: Neoadj Chemo FOLFOX 1/10/2019-?
CEA 1.9 (I guess it's not a marker for him).