Monday, December 06, 2004

Fear and loathing in cancer-land.

"Cowards die many times before their deaths;
The valiant never taste of death but once."

-William Shakespeare, Julius Caesar, Act II, Scene ii

I've been thinking a lot about the feedback I've been getting from this blog - not just the only postings, but also the e-mails, phone calls, cards and conversations. A lot of the reactions have been really surprising to me.

I'm really only blogging for two reasons - 1. to keep my family and friends (a much larger group than I had ever imagined) informed as to my progress, occasional setbacks and frame of mind, and 2. to have an easy, informal, uninhibited outlet for my thoughts, feelings, hopes and anxieties.

There have been some surprising consequences and reactions.

  1. Lots more people are reading this than I expected or intended. I'm astonished at the number of people who've told me (or who I've heard indirectly) are checking in every day or week. For reasons I've explained in previous entries, this doesn't bother me a bit, and is very encouraging and oddly flattering. Most of these folks have assured me that I and my family are included in their prayers, so I say - the more the merrier. Come one and all. Still, I'm a little puzzled.
  2. Many people have told me that they are drawing inspiration, courage or perspective from the blog. Some of them are generously if undeservedly attributing these attributes to me as well. This is simultaneously gratifying and unnerving. I had a conversation Friday night with a wonderful friend who opened with something along the "you've been such an inspiration to me" lines. My reflexive response, which I said to her goes something like - come on, don't' get carried away, all I'm doing is walking the path before me and reporting what happens on the way. My friend elaborated further. She said she is facing her own medical challenge, and that when she reads the blog, it makes her feel like she can't be angry or pissed off because of my "positive perspective." I told her, and I want to be clear here, too, that she has every reason and right to be angry, irritated, scared, frustrated. I am or have been. Plenty. The only insight I have, and it's certainly not an original thought, is that there's no point in letting anger, irritation, fear and frustration drive out everything else. We can't choose the feelings we get, but we can choose which ones we're going to nurture and act on.
  3. A number of people are urging me to turn the blog into a book. This suggestion has come from diverse and surprising sources. It is a flattering suggestion, but I can't really think about it or pursue it now. I also don't want to change what or how I'm writing because I'm looking forward to turning it into a book. I don't mind the suggestion, but I hope my friends will understand why this just can't be a priority for me now.

So today was a great example of how much fear and frustration still dogs me. We were swimming in dread this weekend in anticipation of starting radiation and resuming chemo today. I told Dr. Trivette that this was one of the few times I've found my imagination to be a disadvantage to me. Judy said this morning she didn't think we ought to have to go through radiation and chemo tonight because we'd been through it 150 times in her dreams last night.

As it turned out, the day wasn't so bad at all. I got up early to shower, eat, and take some steroids prescribed to help me through the Taxall. The home health care nurse arrived promptly at 7:00 to install the new Huber pin and the 5FU pump. He was done early enough that Judy and I had time to drop off a DVD at blockbuster on our way to St. Mary's for my first radiation treatment of the day. The radiation was uneventful and prompt, and we arrived, almost timely, at the Virginia Cancer Institute for chemo.

We had a few nice surprises there. First and foremost, the Taxall was ONLY ONE HOUR instead of the four hours it had been in the hospital. I had a few intravenous drugs before the chemo, including more steroids, benadryl and something to prevent nausea. The Cisplatin was only a half hour. Only the saline drip at an hour and forty-minutes, approached the two hour administration in the hospital.

Ed met us at the infusion center around 2:00 to spell Judy and take me to my second radiation treatment when I was done with the chemo. Instead of being late, as anticipated, we got back to St. Mary's fifteen minutes ahead of schedule, and we were in and out in under an hour, including a detailed meeting with Dr. Trivette.

I feel kind of groggy and tired, and I've had some trouble saying certain words - for example, when talking to my mother on the phone, I referred to Judy by my sister's name, and when I wanted a pillow, I asked Judy for a fiddle.

But I didn't die of anenphalactic shock or fistules in the chemo chair. The radiation machine didn't malfunction and burn or blind me. I didn't get the beating I expected today. Instead, we just walked the path in front of us, with inspiration and perspective from our family and friends, great performance by our medical team and all the courage and faith we could muster.


Blogger Jenn said...

I am so glad to hear that it went so well, Jim. Know that we will be walking right behind you on that path.

Jenn, John, FiFi

10:24 PM  
Blogger UisceBaGirl said...

I'm always reassured to read what you write in your online journal (aka blog), since you've been straightforward about the whole process of dealing with cancer. It makes me more comfortable to have what may be the unvarnished truth, so that when I chat with you and Judy I'm not wondering-but-not-asking-for-fear-of-being-intrusive about what's going on. I figure that what you put out here is what you want us to know, and what you share helps me to understand your experience much more deeply and fully than a few conversational details each week could.

As far as the book idea goes, that's outside of the 'looking only at the step in front of you' theory. But hey, if you do feel inspired to do more than blog, why not start by writing something on a smaller scale - a verse or a song or ballad or epic poem? The Cromwell metaphor could be a great starting point.

On courage - my definition of courage is being filled with dread, fear, etc. about a course of action but doing it anyway, because it is necessary to achieve a greater good. Not a parsimonious definition, but it does describe what you are doing. Don't forget to give yourself 'credit' for the extent to which you are undergoing these unpleasant treatments, even though you might think that it's just the path you have to tread.

On the mercifully few occasions when I had to undergo scary medical procedures, I remember feeling that in spite of the love of all those who held me dear, that it was a lonely path and a lonely burden that no one could undertake but me. Facing just that took some courage, not to mention the unpleasant medical procedures. And this was in a fairly routine scenario where the doctors could be very reassuring about the outcome. So while I understand the perspective of 'you do what you have to', I also cannot imagine that I would handle such challenging circumstances as you have.

I hope this week goes as smoothly as it can as you recommence the chemo and start radiation.

10:57 PM  
Blogger vkenny said...

Hi Jimmy, I'm so glad to hear the radiation went as well as it did. Keep taking things day by day and step by step, many times it's the only way to complete the journey and keep your sanity. Love V

10:22 AM  
Blogger Tom Wolf said...

I know it's very tough at best, but am glad it's going as well as it is. Hope to see you soon. Love, Tom

6:14 PM  

Post a Comment

<< Home