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

Thursday, September 6, 2007

Adequate level of relief

Today's treatment was almost normal. :) I received all the toxins that were approved, and now am, uhhh, happily? typing up this blog entry to share the good news with my world. Aren't you so happy to be in a virtual world with little old *moi*? Pepe LePew is glad you're here with me!

Details, for all of the curious and detail-devouring people in my virtual and real crowds, include:

(1) Absolute Neutrophil Count (ANC) rocketed up from 1.3 to 1.6... though this is a mixed blessing and is a much smaller gain than I'd hoped for. This key indicator of the health of my immune system needs to remain at 1.5 or higher for treatment to continue, and I imagine that it will drop below 1.5 again next time (Oct. 19, for those of you that are playing along at home). If it drops below 1.5, treatment will again be delayed. However, we discussed this with my clinical trial doctor (Dr. Charles Blanke - very good, but a very busy guy), and he shared that there is are neutrophil-stimulating drugs available (Neupogen and/or Neulasta). Either of these drugs is likely to be able to stimulate enough neutrophil and white blood cell development to allow the treatment schedule to continue at the once-every-two-weeks clip. And hopefully that will mean only a two week cumulative delay before the trial ends in mid-/late November. Only downside - bone pain from making my marrow work overtime to create the additional neutrophils and white blood cells. A mixed blessing, but surely worth the outcome.

(2) In my analytical frenzy after last week's "setback," I closely read the N0147 protocol (that is the guiding document for the clinical trial, and it is supposed to be the "last word" when it comes to dosages, responses to setbacks, etc.) This led to many questions (none of which were really related to the setback, since the standard first response to blood work that does not stack up against the protocol is to delay treatment for one week). So I sent a list of four questions to Dr. Blanke, and included a listing of my side effects. Well, this led to a couple of iterations of answers to my questions (good answers, by the way) as well as some ancillary concern that those side effects had not been adequately documented over the previous six treatments (even though I had shared them, in no small detail, with each oncology nurse before and during each of my infusions). So, Dr. Blanke's clinical nurse and I had a long, comprehensive discussion of said side effects before she could get Dr. Blanke's signature on the orders that tell the pharmacy to brew up my toxin soup. Translation: additional time sitting in the recliner with no chemicals being infused. Made the day longer than "usual," to say the least.

(3) Finally, they adjusted the chemo dosages for the first time since my participation in the clinical trial began. And to be honest, I am not sure that I understand why (a) the original dosages were what they were, (b) why they were changed today and not on every chemo day, since they are based on my body surface area (height in cm times weight in kg times 0.20247) which changes due to weight fluctuations, and (c) what the effect of the decreased 5FU in my pump (4560 mg as opposed to 4800 mg) on my functionality over the next 3-5 days will be. Such an adventure that we are having now! I intend to ask several questions of Dr. Blanke related to this via email soon.

What's it all mean? I need to carefully watch and minimize stress in my life (especially the "little stuff" that adds up throughout the week). I need to rest a lot more than I have been, and minimize potential exposure to colds/infection. I need to find the energy to exercise lightly and consistently, and take more walks in the park. And I need to blog more often to get stuff off my chest... so my lovely wife doesn't need to try to crack jokes in order to lighten me up - let's just say that the stand-up comic industry should not feel threatened. I love that she is trying to distract me, but there has to be a better way! :)

Thanks for reading and encouraging me in all the ways that you do. The comments I received on my last post were amazingly insightful - so thanks for that too! I am glad to be back in the ring with the chemical toxins, and working toward completing this stage of our journey in cancer-world. And I still feel blessed that I am able to make that journey. Peace to you and yours.


john said...

As pepe would say, "mon cheri, ouu r de most beutiful flowerrrr"

Glad to hear things are back on track. Did they know what they were getting into when they picked you for the trial????

Tell your wife that her job is to look pretty, not act funny. Is the basement done yet?

Anonymous said...

The basement looks wonderful!

Anonymous said...

Ed--you are amazing, and illustrate the power and importance of taking no treatment at face value and without questions. I am so glad you are "dipping into the soup again." Do take it easy, and make sure to do the things necessary to avoid the stress.

hope to see you soon...

Megan said...

Is the basement a metaphor for something? It's just that it was mentioned in the same paragraph as your wife and so I thought maybe it was code between you and this "john" person....

Just kidding, of course

I also had a one week delay at one point. Don't let it get to you too badly - remember that one of the things you can learn from this is to have patience through the bad times instead of powering through - you can only control things in your life up to a certain point. After that point you just take a deep breath and let them happen in their own time and in their own way. Part of wisdom is knowing when to paddle and when to just ride the wave.

Sending good vibes your way...