There’s probably something a little strange about me (shush, you!), but I actually looked forward to meeting the oncologist. I think I just wanted to answers and to start fighting the disease that my body was giving a home to. Dr. Brooks came highly recommended, both from Dr. K and several people around the hospital. No one had a negative thing to say about him and I already felt I owed him a great debt. Thursdays are his research days and he doesn’t see patients. It was, however, my only day off that he had time to see me. Despite my offer to take some time off work (cancer is at least a wee bit more important after all), he insisted he would just see me Thursday morning. Milo tagged along ready to learn just how Dr. Brooks intended to help us beat cancer.
Upon entering the office, the first thing I noticed was the average age of patients. I was, by far, the youngest person there. Most were well over sixty, some older than that, and I felt very lonely even with Milo present. These people all seemed to know each other and supported each other medically. They were friends. I felt very outside the circle and wondered how I was going to build a support group of people like me if all the people weren’t really like me. It’s not the greatest feeling in the world.
The first part of the visit was pretty standard: vital signs, weight, symptom review; all this with the MA before I even met the doctor. Once in the exam room, Dr. Brooks sat with us. He was kind and gentle; it was easy to tell that he was heartbroken delivering the news. He explained that I had adenocarcinoma of the liver, not the primary site. From the tumor markers, he knew that it hadn’t come from anything but one of my ducts: either gallbladder or pancreas. I was concerned at that; pancreatic cancer has a bad reputation. He assured me that he believe it would turn out gallbladder as nothing on my MRI led him to believe my pancreas was affected.
Then he opened the MRI scan. It wasn’t quite what I hoped. The tumor is huge: 7cm X 7cm X 12.5cm. It is firmly planted in my liver and, to make things more complicated, it has begun to infiltrate local lymph nodes. It was easily a stage 3 or 4, much more advanced that I had been anticipating. He wanted to start chemo as soon as possible, get me a PET scan and a port-a-cath and set me up with a surgeon to see if resection was possible. I wanted one thing: fertility.
“Right, because you’re thirty. You’ll hear me say this a lot: you’re so young!”
He did say that a lot that day. Apparently, my tumor type is exceedingly rare in people my age. It is much more common in older populations with risk factors for other cancers. It is almost always a metastatic cancer of sorts. Suddenly, my mind is reeling. What exactly are my survival rates?
“You aren’t a percent; you’re a person. I don’t like statistics and I’m not really good at fortune telling. I’m just going to tell you that you can fight it.”
That was enough for me. Before I left, I had referrals in for the port-a-cath, the doctor was working on the PET scan, I was given the number for someone who would help me preserve my fertility, had another appointment with the oncologist and blood work was drawn. What turned out to be an hour long appointment had already set the course for the next few weeks.
Leaving that office, I felt confident. I could fight this and win; Dr. Brooks had made me believe that we really could beat it. Now all I needed to do was figure out my work situation. This is where I learned that corporations are indifferent. Sitting with my manager, she explained that I could go on leave and use my FMLA (Family Medical Leave Act) time. She sent me to HR for one of the ladies to explain the process. This was bleak. Since I didn’t have short term disability (seriously, who thinks they’re going to need it at my age?!), I would have to depend on my PTO and sick leave to get me through the three months I was granted by FMLA. I only had seven weeks of paid time. Not enough and therefore I’d have to pay the hospital my part of my health insurance. Once the FMLA was done, if I still needed time off I would get three more months of unpaid time off where I would then need to pay COBRA (which is only $700 a month!) to keep health insurance. At this point, I could apply for my long term disability to earn an income, but I wouldn’t get insurance with that unless I footed the bill for COBRA. Worse yet, if after that extra three months I couldn’t tell them I was coming back to work relatively soon, I would be terminated. No job, no health insurance and no money. Wonderful!
The news from HR worried me more than the news from Dr. Brooks. How could I afford medical treatments if in six months I might not have a job? How could they terminate someone for having cancer and needing treatment? What were we going to do?
Milo, ever the calm one, told me not to stress out and take things one day at a time. We’d figure it out. After all, Dr. Brooks hadn’t even told us how long I would need chemo (we forgot to ask in all the hubbub); there was a good chance I might not need to be on therapy that long. Still, facing the unknown started to really freak me out. In a matter of minutes with the HR rep, I had gone from confident that I was going to beat cancer to “What am I going to do now?” the world of cancer is scary enough without the stable things (like your job) being ripped out from under you. I suddenly felt like I needed someone to walk me through this. I needed a guidebook.
There really isn’t one, but there are plenty of smart people out there. Through a friend of a friend, I learned that the Americans with Disabilities Act covers chemotherapy and cancer as a disability. Companies are required to make suitable arrangements for patients with cancer who need shortened hours or light duty. Finding this out changed things immensely. I now had the law on my side if they tried to force me out of my job.
Still, I had an uphill battle coming and I knew it.