My name is Crystal, and my husband John was diagnosed with colon cancer after being admitted to the hospital (12/30) with abdominal cramping and the inability to keep anything down; they found the tumor blocking things up during the colonoscopy. It has been a rollercoaster from hell, but John has been dealing with it fairly well. Actually I think it took longer for him to get used to having an ostomy than the idea of having cancer. He has always been very healthy and healed up amazingly well after surgery, went back to work just 1 week after being released from the hospital and has been working since. He took off the three days of his first chemo treatment last week, and other than some fatigue and constipation did well, and worked the rest of the week.
What I'm currently dealing with, and have been since he was admitted to the hospital, is the horrible fear he'll lose his health insurance. We were protected during the 3 weeks he was out by FMLA, but he has to maintain an average of 30 hours per week per quarter or he gets kicked off of the company plan. So far he has been able to manage that, but from all I've been reading the symptoms only gets worse with time so it may be more difficult as time goes on. Our savings is being depleated at an alarming rate due to the medical bills, and because he was admitted right before the new year which means we had to pay the max out of pocket for 2017 AND 2018. We don't make much and once our savings are gone that's it. FMLA is only 12 weeks, and we've already used 3 so it wouldn't cover even half of the treatment time.
So my first question is, does anyone have any resources I don't know of? Government programs or something? I've read of people who just quit their job or took extended leave for their whole 6 months and the only way they can manage that I can think of is either they're blessed to have their insurance tied to the spouse's job or have enough money to weather the lack of income and medical bills.
My second is how to deal with the well-meaning friends/family/coworkers who seem appalled that I'm "making him work" during chemo. I've tried explaining the insurance problem but they've just waved that away saying we could probably "COBRA-it", and I don't think they realize just how expensive that would be. Insurance on the marketplace for us was more than our mortgage, I dobut COBRA would be any cheaper, we can't afford that especially if one of us isn't working! They know we're not exactly made of money, and one of them even said we should "start a gofundme" as that's how "people pay for medical debt these days". It's so frustrating and I don't know how to deal with it. In a perfect world we wouldn't have to worry where the money for his life saving treatment is coming from, he could leave work and just focus on himself during the 6 months, and I could be at home caring for him. But this isn't a perfect world and comments like that just make me heartsick.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD
06/19 Colonoscopy Clear