Friday, October 31, 2008


I had the MRI on my head and neck last night. I didn’t know what to hope for: that it would show something to explain the numbness in my jaw, or that it wouldn’t show anything. Either outcome seemed unsettling.

I just heard from my doctor with the results: both scans are fine! She can’t explain the numbness, but it is not tumor in my brain or neck!

I am extremely relieved! I had really blocked off thinking about it, so I was surprised at how intensely relieved I feel hearing this news… or rather, lack of news.

I don’t like not knowing, but in this case knowing could signal imminent disaster.

Thursday, October 30, 2008

The phone call

I got the call today that I’ve been dreading for a year or more.

My main client called and said he’s been ordered to cut back expenses even further. They’ve had to let people go, and they can no longer afford me. It’s a very sad state of affairs. I really like the gig, I’ve done good work with them, and of course, I need to keep working.

The timing really sucks!

Tuesday, October 28, 2008


Last week sometime I started feeling a strange sensation around one of my teeth. It’s in a part of my mouth that my dentist has been keeping an eye on, since some of the work is pretty old and can potentially break down. The new sensation isn’t exactly pain, not really a toothache, but the gum and lip in front of that tooth are numb. It feels like Novocain wearing off. It’s pretty uncomfortable, and since I don’t have much feeling there, I tend to bite it while I’m eating, making my lip sore and swollen.

I went to the dentist first thing Monday morning so he could fix me up. Only problem, he couldn’t find anything wrong! The tooth in question already has a root canal, and there are no signs of cracks or abscess. My description sounds to him like there’s something impinging on a main nerve, but he couldn’t see anything in the x-rays and didn’t want to just start digging around.

We called my doctor, who’s now puzzling over it too. Can it be from new lesions in my neck or spine? She didn’t see anything on the PET scan that would cause this, but she can’t explain it either. So she’s going to schedule me for an MRI of my head and neck to try to get more information: yet another medical procedure to attend to.

Wednesday, October 22, 2008

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.”