Diaries, Journals, and what am I doing with this Blog anyway?

I recently heard an NPR interview with David Sedaris, an essayist whose hilarious accounts of his OCD and French language lessons have left me laughing so hard I could hardly breathe.  He was making the distinction between journals and diaries. Simply put, Journals are for writing down what happens. Diaries, on the other hand, record how you feel about what happens.

Now blogs are different. Blog is short for Weblog. A log was originally a record of the day-to-day happenings on a ship, so it's actually more of a technical journal than a diary.

Blogs run the gamut. Some report news or information of one kind only. Others are highly emotional screeds that can be a bit much to someone not personally involved with the blogger. So I've started to ask myself what I want my blog to look like. What do I want to include here? Do I want only to record my cancer-goings on? Or do I want to expand and offer up more personal information? On my last post, Katie, an old friend of mine from my home town thanked me for letting people into my head. But do I really? On occasion, I suppose.

I was raised to believe that the best conversationlist listens much and says little. But I'm thinking that maybe I want some sort of record left behind for my family, my children, my grandchildren that is more encompassing - something that chronicles me - not just my cancer. Emptying my mind onto a page could serve this purpose.

See now that's telling.

Using the word 'emptying my mind' instead of 'emptying my heart'. I am a person of the mind. I follow my mind because my heart has been very, very wrong a number of times. Perhaps I'll find some middle ground in that regard.

I guess my hope is that I'll share more, and more often - perhaps I'll include more personal photos and details of my everyday life as long as they're not to terribly boring.

We'll see how it goes.

Hope is a Dangerous Thing

"Let me tell you something, my friend. Hope is a dangerous thing. Hope can drive a man insane." ~Shawshank Redemption

And this woman, too.

Existing in Bytes of Life

I’m sitting here getting my umpteenth infusion and thinking about the future. The future with me - the future with me and cancer - the future with me and cancer that is progressing.

Slowly, but surely, my cancer is progressing. Dr. J. assures me that its pace is glacial but also said that this fall (probably) we’ll have to start Plan B.

What that is, is currently unclear … perhaps I’ll be reintroduced to my old friend carboplatin (blech).

She also mentioned at some point referring me to lung cancer genetic specialists in New York, Boston, or Denver.

This news of progression is fairly fresh and so I haven’t really had time to think about it, but at what point does it become not worth it? Don’t get me wrong, I’m ... overzealous? I keep hoping I’ll recognize that point when I get there and be able to make good decisions about it.

For now, Dr. J. suggested that I enjoy the summer and we’ll see what happens.

I’ve said this before – it’s a hard way to live, this ‘wait and see’, scan-to-scan, existing in bytes of life instead of the whole story. It seems it’s not going to change.

I wish I could find some way to make it easier – that I could somehow learn to embrace this new way of living…

Suggestions, as always, are welcome.

Roger Ebert and Me

As most people already know, Roger Ebert recently died of cancer. He’d had it for a long time and although disfigured by it, still maintained his public persona.

I saw Roger Ebert once.

 

Living in Chicago, you see celebrities from time to time. But I didn’t see him on the street, or in a deli, or even at a movie theatre. I saw him at the hospital.

 

It was the week after I had been diagnosed with something – they were still trying to figure exactly what. I was in the basement having just completed my PET scan. They were wheeling me back up to my room and they wheeled me right past an older mand and a women with big-ish hair who were talking with a doctor. The man was wearing a hospital gown and hospital footies. The woman was looking earnestly at the doctor, presumably listening closely to what he had to say.

I thought the man looked familiar and once it dawned on me that it was Roger Ebert, I almost turned around to the orderly pushing my gurney to say, “Hey! Do you know who that was?!” See him there made me feel a little more certain about choosing Northwestern for my treatment. If Roger Ebert who, presumably, has a great deal of money and could go anywhere for treatment chose to come here, then perhaps it’s trustworthy. 

And I used this story. At the beginning of this cancer thing, my mother was trying to convince me to go to a cancer center like Sloan-Kettering and I guess there’s one in Florida near where she lives. I understood that she wanted me to get the best treatment possible, but I didn’t want to move or travel for treatment. Once I told her that I had seen Roger Ebert and that he was getting treatment where I was, she understood and dropped the subject. 

When I tell people my Roger Ebert story, many of them ask me, “Did you give him two thumbs up? Hardy harr harr!” I have to say that, no, I didn’t give him two thumbs up. The man was (half) dressed in a hospital gown and presumably had gone through some sort of scan. I doubt he was in a “two thumbs up” sort of mood." I know after I have a scan, I'm certainly not.

I am sorry that his time had come. He was inspiring to many people – both with and without cancer. I hope both he and his family are at peace.

My Incredible Shrinking Monkey

I have no patience and Neurosurgery be damned!

Since I had yet to be contacted by my neurosurgeon, I asked my regular oncologist at my chemo appointment today, "What's up with my brain?"

Evidently, all is well, or on it's way to being well on that front. The spot is shrinking into non-existence.

Last October, she had taken me off of Avastin due to kidney troubles which, once resolved in February, allowed me to go back on it. She believes that going off the Avastin caused the growth, and going back on it smacked it back down. Which is good for now, but it also holds some uncertainty for the future - which I suppose you live with when you have cancer regardless.

So for now, we'll stick with the monkey theme and say that we've kept my crazy monkey at bay.

Yay.

Thanks to everyone for their kind thoughts and prayers.

Love to all.

Ruth

Monkey Mind

 

 

Cancer is back on my mind, figuratively and perhaps literally.

 

Not that it ever leaves my mind for very long. But at my last neuro appointment two months ago, they told me there was a spot. They said that it could merely be one of those oddities that appears depending on how the MRI ‘slices’ you for imaging. But at my last chemo appointment three weeks ago, I was told there was a small (tiny, little, wee, barely perceptible) growth in two areas. I looked at the scans and, sure enough, the tumors looked puffy – like my fingers after a salt binge. She made some small adjustments to my chemo drug line-up and I didn’t really think much of it.

But I had another brain scan last Friday. Usually if there’s no problem, they call me in a day or two and tell me that I don't have to come in. 

The haven't called me.

So I’m starting my mental slog back into the cancer black hole. Like directly after my diagnosis, I’m living in a cancer-colored world. It’s all cancer and brain metastases.

I’ve gone so far as to start looking a 2^nd line treatments and investigating whole brain radiation (which, by the way, is completely and utterly unappealing).

Oh, and I’m hyper-vigilant about my cell phone thinking at it very loudly, “CALL!! Damn you. CALLLLLLL!! You stupid, overworked neurosurgeon!!!”

It’s getting really weird on a whole new level. I was sitting here eating dates and I caught myself thinking, “Hmmm. I wonder if there’s stuff in dates that can cure brain metastases.”

Possible brain metastasis aside, having cancer is hell on your mental health.

Needy Baby, Greedy Baby or Is Your Cancer Making you Narcissistic?

Cancer has a way of making you focus on yourself like nothing else I’ve ever experienced. Your life, whether you admit it or not, is at the mercy of the whims of your treatment and disease. You think about it. You talk about it. You write about it.  You become hyper-aware of discomfort and pain and think, talk, and write about that. Friends and family offer support and encouragement and as a result, you start to feel a little entitled to a certain level of sympathy and attention.

We become needy babies, greedy babies.

Case in point, I met a woman online. She’s around my age and has the same cancer and diagnosis as me. We have exchanged some emails and they have all, without exception, been about her. She will outline her symptoms, treatment plans, side effects, whathaveyou - without even a simple greeting of, “Hey! How ‘ya doin’?” It’s just straight to her business which, I might add, goes on and on and on and on, which I get - sort of - and then closing with an, “I’ll keep you posted.” Not a, "Hope you're doing well," or, "Best wishes," Nothing. Simple manners are out the window – because of the cancer.

I think we, the cancerous, need to be very careful of the people we are becoming as we deal with our illness. We cannot come to think of ourselves as special people requiring special attention and due special privileges simply because our cells have gone haywire. Although it may seem different when you’re showered with attention and concern by family, friends and medical people, it’s not all about us. Assuming we’re well enough to function in society, we need to continue to engage in the give and take of relationships – perhaps even more so considering what some people do for us.

So here’s my clarion call for dropping those infantile tendencies and maintaining good, adult manners and concern for others despite our cancer.

It's not that difficult. Really.