I haven’t talked much about this but for the last 4 months, we’ve been going through hell trying to deal with illness and medical plans. We feel like we’re going through a maze trying to deal with doctor appointments, tests, doctor referrals, and bills that can cause you to have a heart attack.
Four months ago, Doug, my significant other, got hit with a huge whammy. He started vomiting and pooping blood. (Sorry for the visual) We didn’t know it was blood at first because it was black, but after a visit to his doctor, she ordered him to go straight to the emergency room at our local hospital. We obeyed, and he ended up spending a week in the hospital with a GI bleed.
. . . but that wasn’t all . . .
An endoscopy showed there was something growing on his pancreas, so he waited at the hospital for 8 days before a room opened at UCLA, where he could be seen by one of their surgeons.
The surgeon did a laparoscopic biopsy that confirmed Doug had pancreatic cancer and scheduled a distal pancreatectomy (also laparoscopic) in hopes of taking it out. Unfortunately, when they went in, they saw that it had spread to his liver and had to close him up. Once pancreatic cancer spreads to other organs it’s stage 4 and the only conventional treatment available is chemotherapy. Most alternative treatments aren’t covered by insurance and immunotherapy, which has had great success with other types of cancer hasn’t proven to be effective for pancreatic cancer as of yet. It wasn’t something I wanted to hear. As I wrote a while back, my husband died of brain cancer and pancreatic cancer is just as bad, if not worse.
Stress can make your body do weird things
The news hit me so hard I started having strange aches in my stomach. I was pretty sure I had strained myself lugging Doug’s heavy suitcase up the stairs when he came home from the hospital. I went to the doctor and she ordered an ultrasound but because of my medical plan, the earliest opening was four months out. After a couple more weeks of odd twinges, I finally drove myself to the ER and they did the ultrasound right away.
It was clear (Pheww!) and I didn’t even have a hernia from lifting the suitcase. However, they did see a spot on my kidney that the doctor said he wasn’t worried about. It’s common to have kidney cysts and most are benign. My labs show that my kidney function is slightly sluggish so they suggested I get a CT scan as a precaution. (PS: The CT scan was clear too!)
Even a good medical plan isn’t perfect
Doug, who is a retired camera operator, is covered by Motion Picture Health through UCLA, which is one of the best medical plans around and he’s on Medicare. However, we’re still tasked with coordinating treatments, referral doctors, scheduling scans & picking up meds. It can be a nightmare because his specialists are spread all over town.
He’s still able to drive and get around but when he isn’t feeling well, I drive. I always go to his appointments so I can stay on top of what’s going on. Patients need someone advocating for them because there’s so much to remember and it can be confusing. His daughter helps too but she’s taking care of her mother who’s in pretty bad shape herself. She’s planning to leave for England to be with her British born husband. They’ve been apart for almost a year because of his job and immigration red tape.
My not so excellent plan
I’ve been on free healthcare for the past few years mostly because I file my taxes as an entrepreneur. I’m excited that I’m about to go on Medicare. Free healthcare isn’t bad if you’re well but I have to go to a clinic and my urgent care facility is miles away. That’s why I couldn’t get an ultrasound appointment for 4 months. If something was seriously wrong, I could be dead before then.
I’m switching over to Kaiser at the beginning of the year, which I didn’t realize was an option because the entire health system is so complicated. I would have switched right away but I already scheduled a mammogram, CT scan, and pelvic exam and didn’t want to reschedule them with new doctors.
Unnecessary stress is terrible for patients
Doug drives himself crazy every time he deals with a new doctor and goes ballistic when he gets medical bills in the mail. His plan pays for everything, but it freaks him out when he sees a $1oo,000 hospital bill or a note that a simple immunization was rejected by his prescription plan. I tell him to ignore the bills because they’ll eventually get worked out. The last thing a patient needs is more stress on top of their condition.
My future is in flux
I’m not sure what I’ll do when he dies. I know that doesn’t sound hopeful but unless a miracle happens, the survival rate for pancreatic cancer is grim. So many notable people have died from it. A few are Patrick Swazey, Alan Rickman, John Hurt, Luciano Pavarotti, Bonnie Franklin, Donna Reed, Michael Landon, and Jack Benny. I’ve already been through this once with my husband, so I’m trying to be realistic. Doug’s pension and Social Security pays our rent and will be immediately cut off. I’ve been pleading with him to get his affairs in order but because of all the hoops we’re jumping through he hasn’t done anything about it and honestly, I don’t think he ever will.
I’m strong, adaptable, and will bounce back as I did before. My family and some of my friends have offered to help if I need it but it’s still terrifying to think about. I’ll have to up my game with my business and deal with finding an affordable place to live on short notice. It’s a scary situation to be in at age 65, but that’s the way the cards are playing out. In the meantime, it would help if medical plans were easier to maneuver and were less stressful for patients and caregivers. For now, we’re taking it one day at a time.
How have you dealt with a major illness either as a survivor or caregiver? Share your tips in the comments below.