The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Sunday, September 2, 2007


OK. Last Friday (8/31) was supposed to be chemo treatment #7. Didn't happen. After a friend gave me a ride up to Portland, and watched me get "accessed" through my PowerPort, by blood test results were not what they needed to be in order to meet the requirements of the clinical trial protocol. The key indicator (ANC - Absolute Neutrophil Count) was 1.3 (1300 neutrophils per milliliter) and it needed to be a 1.5. Very disappointing, to say the least. I was hoping that I would be able to power through this whole chemo-therapy thing (just like I have managed to power through all the other challenges that life has thrown my way over the years). As an aside (for all the detail-oriented bio-geeks out there): my platelet, white blood cell and red blood cell counts were steady; I lost another pound (down to 159.3 lbs); I had significant increases in two measures of my liver enzymes (unexplained now, and we will learn more next week when we try to get #7 again); my blood sugar (glucose) was slightly higher; and there was a small amount of lipids (fat) in my blood sample (also unexplained, and to be reinspected next week).

So, #7 is now rescheduled for Sept 6th (Thursday), and then the two-week regimen restarts. One of the greater pains is rescheduling all the appointments...

This setback hit me pretty hard. One of the reasons that my friend took me to Portland was due to the fact that my close friends from college and I were going to Spamalot. What a treat that was (seeing my friends and then the show)! But I was distracted the entire time by this blood test thing. And even though I know (from a factual perspective) that this is not the end of the world, and that things may in fact be better with an extra week off, I felt like I had failed somehow. I am not a fan of failure, even though I have no conscious control over my bone marrow and its ability to produce neutrophils (which are the precursor cells that support the fighting of infection). And I understand, academically, that the protocol is set up to protect the patient (uhhh... me) over the course of the treatment. I am just so looking forward to this stage being behind me.

So, once again I am compelled to remind you friends, family, and Internet blog surfers - get a colonoscopy! It's so much easier than this chemo. And go see Spamalot... those guys are insanely funny.


Anonymous said...

Ah ... my friend. Two things you mentioned in today's blog resonate: the feeling of failure, and the expectation that you could power through cancer the same way you have powered through prior challenges in your life.

I get this.

Having been diagnosed with an auto-immune deficiency that affects the central nervous system and recently begun treatment, I understand the sense of failure. After about a year and a half of denial, I decided to start the daily subcutaneous shot that suffices as treatment. Although the course of the disease is unpredictable, and an individual prognosis is impossible, the injections reduce the severity and frequency of attacks in overall populations studied.

So that's it.

No way to predict the illness or the effects of treatment. And a future filled with daily injections for the rest of my life. I feel like my body-- in the past a sturdy and reliable host-- has betrayed me. It has failed; I have failed; something's failed.

I've always been the biggest, strongest person in the room. By that I mean I can solve any problem; I can face any foe. I operate from a place of resolve, in the belief that I lead a charmed existence. I expect to win. I'm a winner. I expect this of myself and others have come to expect it of me, too.

But this disease thing is different, somehow. I can't fix it. And, it comes in a period of my life wherein I already feel battered -- in a year that included sitting at the bedside of each of my parents as they passed away -- my Mom of ovarian cancer; my Dad of complications of Parkinson's disease. Two other things I was powerless to fix.

I thought I had already been given the lesson that things are not always within my control. Twice. I thought I had learned that I can't fix everything. I thought I had understood that if you step down, someone else steps up. But, apparently, my lessons are not over. Like a fighter in the ring ... get up ... get up ... for the chance to throw another punch or get knocked down again.

So,what I'm trying to say, Ed, is you have not failed and you don't need to power through this. Although people may not understand your personal darkness (and you may not either), they are there to offer light. You only need to be. Breathe. Smile. Love. Be sad. Your body is still a good host; your spirit is stronger than ever. This challenge will give you a glimpse of yourself and others that you would otherwise never have witnessed.

So lie on the mat for a while if you want. Get back up when you're ready.

May peace be your constant companion in the days ahead and always.

Anonymous said...

Ed -- I'm not sure where you are on your spiritual journey with this so I'm going out on a limb...
take it for what it's worth to you.

Henri Nouwen is one of my favorite writers -- he says, "To wait open-endedly is an enormously radical attitude toward life. So is to trust that something will happen to us that is far beyond our own imaginings. So, too, is giving up control over our future and letting God define our life, trusting that God molds us according to God's love and not according to our fear. The spiritual life is a life in which we wait, actively present to the moment, trusting that new things will happen to us, new things that are far beyond our own imagination, fantasy, or prediction. That, indeed, is a very radical stance toward life in a world preoccupied with control."

- Cesie