Life is hard

Many of you have contacted me in the last three months since my last blog post. I’ve gotten emails and phone calls asking tentatively if I’m all right.

I appreciate the concern shown by you, my dear friends. I feel guilty for having set up an expectation with this blog and then abruptly abandoning it when life got hard for me. I haven’t wanted to talk about what seems to me to be ugly and sordid. My reputation is sullied in my own eyes, and I haven’t wanted to share that. I don’t feel good about myself. I’ve been depressed.

To set the record straight, my health is good. I struggled with side effects of the immunotherapy through the summer. The itching of early July faded into pancreatitis that lasted about six weeks. Pancreatitis is a bitch. I lost most of my interest in food, and whether I ate or not, I was dogged by bouts of nausea and general queasiness. I lost some weight and was weak and tired. From July through the middle of September, my throat was congested, probably from post-nasal drip. I coughed and cleared my throat constantly for weeks. It disappeared as suddenly as it showed up. By the time it left I felt my energy returning. I started exercising again, tackling paperwork I hadn’t been able to address in a year, and pushing myself to get things done. As I became more productive, my stress over my financial problems subsided a bit. Things were looking up.

And then came today, my latest doctor’s appointment to discuss the PET scan I had on Monday.

It was my first appointment since August. I was happy to see her and started babbling small talk when she entered the office. The look on her face stopped me short.

“What is it?” I asked. “The scan?”

“Yes.” She took time to compose herself.

“How bad?”

“The pulmonary tumors have increased in size and number. The disease has spread. There are new tumors in your liver, possibly your bowel, and your spine.”

“What?! How can that happen?”

“I don’t know. I hate melanoma.” This wasn’t the first time I’d heard her say that. “It’s vicious, aggressive, and unpredictable. When the radiologist called last night and said she had bad news, I had to stop and think who’d been scanned. I knew you were scheduled, but I was completely unprepared for bad news about you. I was so upset, wondering how I was going to tell you, that I couldn’t sleep.”

“I’ve had patients on immunotherapy who looked very good and their scans were good, so we continued the treatment. I’ve had patients who looked very bad and their scans were bad, so we switched them to something else. And I’ve had a very few, like you, who looked very good, but their scans were bad. In those three cases, I took them off immunotherapy immediately and put them on chemo, which is what I’m going to do with you too. In all three cases they achieved complete remission. That’s no guarantee; three is a very small sample. But it’s possible the immunotherapy sets up your immune system to work with the chemotherapy and make it more effective.”

“So the treatment I’m scheduled for today will be chemotherapy, not Ipilimumab?” I asked.

“It’s possible that continuing with Ipi would eventually turn things around by itself, but I don’t want to take that chance.”

“Will I lose my hair? I’ve rather come to enjoy these white curls.”

“You won’t lose your hair. You’ll have three treatments, three weeks apart, then another scan.”

I saw her eyes tearing up. “It’s not your fault,” I said.

She put her arms around me and said. “It’s just that I like you so damn much.”

Latest results

“The scan is what we expected,” my doctor said when she entered the exam room. “No new disease, but the tumors that are there are lit up. That’s because they’re inflamed."

She was referring to the PET portion of the scan which tracks the radioactive glucose injected into my body beforehand. Malignant cells gobble up the glucose more readily than regular cells, so they show up as points of light in the pictures.

"If it were up to me, I wouldn’t do the twelve-week scan at all, just the one at twenty-four weeks. But the FDA requires it.”

My side effects over the past three weeks have been nearly unbearable. The itch and rash are gone, for the most part, but I’ve still got pancreatitis, so I continue to have bouts of nausea and vomiting, even though the anti-nausea pills I take control my queasiness during the day. I also sleep a lot, feel very weak, and have extremely low energy when awake. When I reported the symptoms to my doctor, she sent me to the treatment floor for an infusion of steroid to boost my energy level.

In fact, from the laundry list I presented, she suspects hypothyroidism as well as pancreatitis, so she also ordered more blood tests, commenting that the immunotherapy tends to unleash certain elements into the blood that cause “little itises”, and these inflamed organs can cause lots of uncomfortable symptoms. She’ll call me with results of the tests, and plan to see me in a month to make sure things are under control by then. We’ll be in touch via email and I’ll go in to see her sooner if things don’t clear up by next week.

It’s unnerving for me to watch this process continue. I would certainly like to be disease-free. I’d like to stop having side effects from drugs that address one issue while compromising another. I’d like to forget about the medicine-balancing-act that attempts to keep it all under control.

On the other hand, the disease has not progressed in over a year. That is certainly good news. It makes the condition manageable. At that slow rate, it gives the immunotherapy a chance to settle in and work over the long term.