Patience

Once again I was struck by how closely Leroy Sievers captured my own situation and feelings. I think he is on a very similar disease timeline with me as far as when I first got cancer and when his current cancer reoccurred. He was the one with the Ted Koppel special in May 2007 that prompted me to begin this blog. His blog is on the NPR website and can be reached at URL http://www.npr.org/blogs/mycancer/. I have taken his entry for today and modified it to my situation. He called his entry the “Tortoise and the Hare.” Consider this a mild form of plagiarism. But in my defense, he tells the story better than I would have.

I'm waiting. I'm in that weird period of limbo known as "between scans." I'm still healing from the operation I had two months ago and the chemo that I’m still going through. I'm still pretty sore and fatigued. So we're giving my body a chance to heal. Time to catch up and repair itself as best it can. In a few weeks, I'll have some new scans. Then it will be time to act. At least that's what I expect.

In December 2006, I had 5 cancer hot spots showing up on my PET scan. Chemo seemed to reduce or eliminate 4 of the 5 to undetectable levels and the fifth was removed via surgery. If the next set of scans show no hot sots or very small tumors -- then maybe we'll just continue to watch. But I doubt that's what we'll see. My cancer is pretty aggressive. I expect we'll see some new hot spots or a return of some of the old hot spots. Some of those were deemed to be in inoperable areas. And, of course, there's always the chance – maybe the likelihood -- that there will be new tumors somewhere else, too. At the time back in December 2006, I was encouraged to visit the palliative care unit. I didn’t know what palliative care meant at the time, but I know now. This is the unit where people go to die. They give you medicine to make you as comfortable as they can, but it is not healing medicine, it is comfort medicine like morphine.

In the meantime, I wait. Now, I'm not a particularly patient person. I'm used to instant gratification. I spent my adult life making project plans, leading large information technology teams, and making things happen… on time and within budget… or else, period. I was used to being in control. Used to being able to make a decision and have it implemented right away. Life moved on my schedule. At least that's what I thought at the time.

Things have changed. And so have I. I have learned patience, because I've had to. My life and my body no longer move according to my demands. I don't set my own schedule any more. And surprisingly, I'm usually okay with that. But then I guess, when you don't have a choice, you have no choice but to accept the way things are. I also credit the anxiety medicine with helping me reach this new state of acceptance and at times tranquility (or sedation). Being into yoga in my youth, and experiencing actual yoga trances, the anxiety drugs do remind me of some of these yoga experiences.

So I'm not counting the days to the next set of scans. But, I will soon push to get them scheduled since they are not yet scheduled. And if they find something, then we'll come up with a plan.

We were all raised on the story of the tortoise and the hare. Of course, most of us secretly sided with the hare, right? After all, the moral of the story, "slow and steady wins the race" is hardly the kind of line to fire the imagination or adopt as a motto for life. But it turns out that it's really true. This is a long race. It’s a marathon, not a sprint. There may still be a long way ahead of me although some days it’s hard to believe that. The tortoise was right after all. Who knew?

That ends the plagiarism and turns me to a new subject. A few blog entries ago, I wrote about a Insulin Potentation Therapy (IPT). Since writing that blog entry, I have reached out to three top major US cancer centers and the NIH about this therapy. I’m guessing that the cancer institutes that I reached out to are in the top 5 or 6 in the US if not the world. On one end of the spectrum, a well respected doctor with expertise in my specific cancer area called the therapy “absolutely ridiculous.” He said a patient of his almost died from the therapy. My cynical reaction was that people die from cancer and its therapies as well. On the other end of the spectrum, there were no active trials going on and the treatment was not in use at any of these facilities nor did any of them offer a referral to places that may be using this therapy. Bottom line, no endorsements. Even though cancer is huge business, I don’t subscribe to the theory that the drug companies or doctors are conspiring to keep a successful treatment out of the hands of needy patients. There are far too many dedicated doctors and researchers who want to find a solution to this insidious disease. So, I’m still balancing the discussion I had recently with a patient who believes this therapy (along with some oxygen therapy) saved his life with the cold shoulder provided by America’s top medical experts in my specific cancer field. I actually found a book dedicated to this therapy for sale a few days ago and ordered it from Amazon.com. I’m not sure I’ll learn anything more than the research I’ve already conducted on the web. I’ll let you all know what I learn as I skim its contents once it arrives.

Enough for today. Take care everyone.