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.”


Doug Hennig said...

Ceil, I'm so sorry to hear about your setback. All I can say is that in every journey, there are steps forward and steps backward. Keep on fighting! I'll continue to pray for your recovery.

Steve Bodnar said...

Ceil, thanks for posting today. My thoughts and prayers are with you. I hope you are your doctor's fourth out of four.

Rick Schummer said...

Hi Ceil,

From your posts I believe you have the best doctor in the world. I not only pray for your recovery and to bring you energy to fight, but to help your doctors find the right combination for you to battle this setback.

Ceil said...

Doug, Steve, Rick,

I am so fortunate to have friends like you. Your friendship and your kind thoughts mean so much to me! This is definitely a rough patch and I know you'll help me get through it.

Rick, you are absolutely right about my doctor. She's amazing. When I'm with her I feel like I'm her only patient. But I know I'm not the only one who loves her. I usually have to wait in the exam room while she dotes attention on others before she gets to me.

One of the things that makes her special is she did a stint as a nurse while she attended medical school. She has the compassion of someone who actually cared for patients. And she understands the nurses' point of view. They appreciate her too.

I could also go on and on about how smart and dedicated she is. I hope Steve is right and I'll be her 4-for-4. Of course I hope it for me, but I also hope it for her. It's so important to her to further the research, and I'd love to contribute to that process.


Anonymous said...

Hey Ceil,

Add a few others who are praying for you...

yag & Beth

Ceil said...

yag and Beth! Thank you, thank you. I love knowing there are cyber-faces watching out over me from far away on the wrong coast. :)

Anonymous said...

It seems that nobody addresses the emotional tsunami of cancer -- and of cancer treatment.

I hear you. It's tough.

Cancer is a side effect of the modern, carcinogenic world, and ...

We do the best we can.

Laurie Todd

Ceil said...

Yes, it's an emotional bombardment like no other! And no one knows that better than you, Laurie.

Thanks for checking in and thanks for the encouragement.

Dan Freeman said...

You know my prayers are with you, Ceil!

Rick Hodder said...

Ceil, got a few extra pockets for some extra prayers?

I'm sending 'em whether you got pockets or not - they can be tastefully draped over one's shoulders or woven into an attachable fox tail.

Seriously, you're in my thoughts and prayers.

Ceil said...

Thanks Dan and Rick. You make me feel so special!

Anonymous said...

Ceil, Sorry I haven't responded to your recent post, guess I've been waiting for the "right words".....truth is,there aren't any, Doug said it best and I'll continue to pray that this next course of treatment is a "step forward" and more tolerable than the're due! Love, Dianne

Ceil said...

Thank you Dianne. It's good to hear from you! This is definitely a hard time. Waiting, not knowing what's going on... it's upsetting.

Barbara Peisch said...

Hey Ceil,

I know you will beat this! Keep on fighting!

Ceil said...

Thank you Barbara. It's certainly a struggle. At the moment, I just don't know what to make of my situation.