Trying to Understand and Cope

I haven't blogged for a couple of days now. But not for lack of wanting to do so.

It's funny how this being sick stuff has been working. (Funny peculiar, not funny ha-ha.) Life was easier in some ways during the chemo and radiation therapy. Back then, I felt I was actively fighting my cancer. Following instructions from my docs, doing whatever they told me to do. Putting up with any pain or inconvenience because I knew it was all in my best interest. It felt that it was modern medical science at its finest.

It was easy back then to imagine X-rays crashing into cancer cells and exploding them. Gone for good. Or cancer cells finding themselves surrounded by Cisplatin (my chemo drug) and being ripped apart and dissolved. Something was actively happening to make this disease a thing of the past.

But all that ended in late July and early August. Since then, I've gone back to my docs for regular check-ups -- and I continue to try and do what I'm told.

But I don't feel like I'm doing anything to assure the quick and permanent demise of my disease. I am trying to heal -- and I now understand that the process will take a much longer time than I anticipated. And I do understand that complete healing is critical to full recovery.

But I'm anxious because I haven't had a scan of any type (CT, MRI, or PET) since May. So I may be completely clean of the cancer now and never have a recurrence ever. Or I may have 8 or 10 new tumors in my lungs, liver and/or elsewhere. The radiation doc tells me there's no sense in scanning if we simply "light up" a perfectly healthy lymph node or two that was activated by the radiation treatments. In other words, generate a false positive.

So for weeks now, I've been suspended in this net of uncertainty. Things may be perfectly fine. Things may be deteriorating rapidly. I don't know. And I can't know. Not yet, anyway.

And this squamous cell carcinoma on my jaw was certainly no confidence-builder: why would that show up? what does it mean? The docs kind of tossed off an answer for me, and it may be true (see earlier posting) but lately, it just feels kind of ominous.

All of which is to say that I have spent most of a week trying to understand and cope with what it might mean if and when this cancer returns. As mentioned elsewhere in this blog, this is a very aggressive form of cancer...

A very dear friend has uncovered an alternative medical treatment, and we've been trying to get our medical support staff to pay attention to its possible use in my situation. No luck so far...

Another dear friend has suggested a series of internet-based lectures on Living Within the Present Moment. I've signed up. It feels very healthy.

But sometimes. Despite all the love and caring that I feel from you, all the words of encouragement from so many wonderful people, all the clever ideas from so many sensitive and wise friends... sometimes, I just get scared.

So I haven't spent any time blogging for a while. But I've been busy weeping and sobbing. And holding onto Deb for dear life. I have been trying to face the worst possible scenarios and tell myself that even this scenario or that one would be okay. But it's not working really well.

I try to disconnect myself from the past (which I cannot change) and the future (which I cannot predict) and live totally in the present moment. And that helps considerably. But the old habits of "What if..." and "Why did..." creep up on me and take over my thinking. And that can bring on a fresh set of tears.

[Transition starts here!]

Tomorrow, I see my radiation doc. And I hope that he will give the "green light" to have the food tube removed. That would help me feel a great deal more human and normal. And he may talk about scheduling a scan of some type or other.

And I've made an appointment with my dentist to have the old amalgam-based filling removed from the molar that caused such damage to my tongue (which, I am happy to report, is completely healed). This should give any future scan a clearer picture about what is going on in that part of my head/neck -- the area where the original tumor was located.

Keyboard lessons are going well. I am now working on the Cmaj to G7 chord transition with my left hand. A very basic piece of piano playing, but hey.

Deb continues to be the light of my life. I had a gig scheduled last Friday at one of my favorite events (a combination classical farm equipment show, 19th century trade skills and just good fun), which was washed out both Friday and Saturday. On Sunday, however, Deb and I went to the event -- in perfectly wonderful weather -- and enjoyed ourselves thoroughly. We have found in each other more love and caring in the last several months than I could ever have imagined.

My Meadville School starts up in a couple of weeks, so I will spend three days soon with people who mean a tremendous amount to me.

And I am compelled to admit that life has been pretty good to me.