Wednesday, August 10, 2011

Still not in 'Remission', but heading there

Kel has officially had 'cancer' for 224 days - diagnosed on 12/30/10, and continued through today. We were hoping to hear the all clear after his blood draw last week, but alas, it was not to be.

His AFP (that all important marker in his blood) has gone down, which is GREAT news, but only to 12.5. Remission officially occurs when the # is below 7.5. The protein has a half-life of ~1 week, so we expected it to be closer to 6 based on the last results, but as my dad pointed out (damn math expert that he is), the # 6 was assuming that Kel's AFP will get down to 0. That might not be true. His baseline may be at the higher end of normal at 5 or 7.

So fancy math ... if we assume that his 'normal' is 5, and his last draw had the AFP at 48.5, then 3 weeks later it should have been ~10. And that is just me picking 5 at random. It may be 7, or 2. We won't know until it gets there. So really, the progression of AFP is decreasing from before as it approaches normal, and remission is not yet official, but Kel is getting closer and closer every day.

Our oncologist referred to this time as 'nothing to worry about', but 'not yet in the clear' ... it is a holding pattern with cancer. A prolonged slow dance. Oh, joy.

I think knowing one way or the other would be better ... knowing he is in remission, at least for a while, or knowing that the tandem transplant is imminent. But the in between not knowing crap? That sux (sorry, doing the sux section early here).

I don't think I could figure out how many of these last 224 days have been spent waiting. Waiting for chemo, for results, for magical 'remission', for the elusive 'all clear', for surgery, for appointments. Waiting and worrying and not knowing and fearing (I know, that sentence needed commas). Oscillating between hope and faith, and pessimism and tears. Doing something 'active' helps - scheduling surgery, or doing chemo. It is the in between that is hard. This whole 'hurry up and wait' thing? SUX.

More fancy math now ... let's stick with my same assumption of a baseline of 5 for Kel's AFP. The next blood draw is in 4 weeks, and from 12.5 it should be down to 5.5-ish. The next blood draw appointment is 9/2 with results on 9/7. Let's GO remission! please?!

Thanks for all of your prayers, thoughts, hopes, and love. It helps us feel the love and keep hope high.

With love (and fatigue),

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