A nurse on the oncology team at the awesome hospital called me one day during my lunch, right after I had woken up from my lunchtime nap in my car. (Lunchtime naps in my car were a daily thing starting in February.) She had heard about my case from my doctors. She wanted me to come to the multidisciplinary clinic on Monday, March 25th and spend the day at the hospital. She would take my health history and get some blood work to present my case to the team of oncologists. From there, they would either accept or deny me into the cancer treatment program. If they accepted my case, I would meet with the oncologist, radiation doctor, and social worker in the afternoon.
To prepare for my visit to the cancer clinic, the doctors scheduled me for a PET scan at the hospital the Friday before my big day with them. No, it did not reveal my spirit animal to be a unicorn. (But it is.) For a PET scan, I had to fast for a few hours beforehand, then pass a glucose test when I got to the lab. Once I passed, the technician injected me with radioactive solution. I expected this liquid to be bright green or yellow. It is disappointingly clear. I know. Sad! After the injection, the technician took me to a quiet room to lie down (or sit up for those of us who cannot lie down because it induces the cough) on a hospital bed and be still and quiet for 30 minutes to let the solution work its way through the system. I wish insurance was more willing to cover this procedure. It is so relaxing! I would be so excited if my doctors told me I had to do another PET scan!
The scan itself doesn’t take long, maybe 20 minutes. I laid down on a table in regular clothes, since none of them had metal, and the table slides in and out of a tube at a very slow pace while it imaged my radioactive body. It’s pretty quiet, sounds like a fan. I had to hold really still. I almost fell asleep during this procedure more than once. Seriously, PET scans are a relaxing process.
On Monday morning, my husband and I went to the hospital for our big day! I had brought water, a book, and lots of hard candies to make it through a long day of talking to people without coughing too much. I got my blood drawn, met with the nurse who had contacted me and gave her the rundown of my symptoms that started in October, then went to the cafeteria for lunch. My palate had been extremely picky for a few weeks leading up to this, similar to being pregnant. Onions, the thought or smell of them cooking or raw, would induce gagging. I chose an onion-free, egg salad sandwich and SunChips. The nurse had told me that morning how important protein is when fighting cancer. It was the only thing that appealed to me.
After lunch, we went back to the multidisciplinary clinic. I don’t remember who told us the medical team had accepted my case. It didn’t matter. I was so happy and grateful that I wanted to cry. My husband and I spent a couple of hours in an exam room while one doctor after another came in to talk to us. The oncologist came by, a warm doctor with a Texas accent. He sat close, explained everything, and put his hand on my knee in a reassuring way.
He asked, “What is your goal today?”
“My goal today is to have a treatment plan,” I said.
He didn’t directly tell me that he couldn’t give me an exact treatment plan. My genetic testing results hadn’t come back from the biopsy. Without that, they didn’t have a specific treatment plan. Ok. Hurry up and wait. I had been optimistic and thought they’d be back that day, Business Day 5.
We reviewed my CT scan from almost two weeks before, which I had only heard results of but not seen. We reviewed my PET scan, which showed basically the same stuff and concentrations of cancer within my body as the CT scan. I had a fracture in my femur and the structure of my right hip was at risk to break, if we didn’t reinforce my femur. The cancer had degenerated my T6 and T11 in my spine, causing my unbearable back pain. I had excess fluid around my heart, which put pressure on it that was dangerous to my health. It would have to be drained at some point. I had pleural effusion, or fluid around the outside of my lungs, primarily the right one. No wonder I was coughing! Depending on my genetic results, medication would help with the chest fluid issues. I asked for something to address my cough because I blamed so much of my pain on it, and if we could do something to reduce it, that would help. The doctor gave me a prescription for some cough suppressants, Tessalon pearls.
The nurse on the team was also in the room. She wanted to pull more blood for a different genetic test that would be back within a week. Aside from getting poked with a needle again, this sounded good to me! I was willing to do anything that would answer why I had lung cancer. A nurse came and pulled two tubes of blood from me at some point, and she was a pro. I had spent the past week getting poked for blood at my regular doctors office and IV’d for the iodine contrast during the CT scan, and then for the biopsy the next week, so I appreciated a quick and efficient draw.
The doctor finished up the plan that we could put in place, and he and the nurse left for their next case. He gave me a hug before he left. I really liked this doctor from the moment he walked in the room. He also gave me his cell phone number, so that I could text with any questions or issues that came up. He assured me that I could use it, and if he needed to pass the request on to his nurse, he would let me know. So far, he’s been true to his word and responsive!
The oncology radiologist visited next. He wasn’t as warm as my oncology doctor, but I still liked his no-nonsense way of presenting information and talking to us. He brought a resident with him, too. We discussed the back and hip pain I had been experiencing and how I had been managing it. I had been taking all the allotted ibuprofen in a day, every day since December. It would knock it down to a manageable level, so that I could function and talk. I remember one day at work, the pain was so bad that I took ibuprofen as soon as I got there, but I couldn’t speak to anyone until it kicked in about 30 minutes later. I tried not to cry at my desk because my back hurt so bad. I thought it was all due to my cough upsetting all of my muscles and bones. And every day was different. That was a bad day.
The radiation doctor explained that radiation would target my affected areas specifically with a laser which would kill all the cancer cells, and any fast moving cells, too. Radiating the spine could affect the esophagus and give me swallowing issues for a couple of weeks. Radiating the pelvis/hip could make me start menopause. I had to laugh at the last one. Fighting cancer is hard enough. Let’s take on menopause on top of it. Hahaha. Might happen. Ha. Radiation would knock down my pain significantly. I was sold, not that I had a choice. It was part of my treatment plan, no matter what my genetic results said. We had to address the cancer in my bones.
Anyway, the radiologist and I discussed where to start radiation first: my pelvis or my spine. It was hard for me to decide which hurt more. My everything hurt at this point. I coughed every minute, and every cough induced pain. My back and ribs hurt so bad that it hurt to pull on pants, underwear, reach for a glass in a cabinet, drive, breathe, talk. I would need to get mapped before I could start radiation. It’s radiation planning basically. Before I left the hospital, I had an appointment for mapping the next day. This place was on their game!
The social worker met with us next. I had mentioned to someone that I had a 13-year-old son, so she brought some resources specific to him. She talked with me and my husband about the emotional rollercoaster we had experienced since finding out about the mass in my lung and diagnosis not even two weeks earlier. She addressed the feelings of helplessness my husband experiences when I’m in pain. We talked about how hard it was to have to tell my son, who has already lost his dad, that now his mom has cancer. It didn’t seem fair to him, though to play in the game of life, we all have a time limit, and we don’t have a guarantee of its length, even the doctors can’t do that. The social worker told us that she was there to support any and all of our family. It comes as part of the cancer program.
We finished our day at the hospital around 4 p.m. We were hungry and tired and overwhelmed with information. Overall, I felt disappointed that we didn’t have the genetic results back and no specific treatment plan. The doctor had assured me that I had more than a 50% chance that my cancer was caused by a genetic mutation, and that meant targeted treatment which cancer responds very well to. Nothing else made sense. I mean, none of it makes sense, really. I’m not a smoker, I’m very active, I eat a healthy diet. It didn’t seem like a cancer I had given myself by smoking or by living with excessive radon exposure. I’ve lived in a couple places that probably had radon over the last 10 years. My husband and I had joked that the mass consisted of dog hair. We wanted that to be the diagnosis. “It’s just a hair ball. That’s why you’re coughing. Here, take some mineral oil, and you’ll be fine.”
We may not have known the cause of the cancer that day. We had a plan from the doctor, pretty general one, and that was okay. I had an appointment for radiation planning. I also had an appointment with cardiology on Wednesday to evaluate my heart’s excess fluid. Looking back, all good things. In the moment, I felt sad. My husband and I went to Panera for an early dinner, some soup in bread bowls and a vanilla cinnamon roll for dessert. I cried on the way home, and he held my hand and told me it was okay. It was okay to feel how I felt, how we both felt. We’d have our answer soon.