Friday, October 7, 2011


Tonight's about remission with an asterick - the kind that is not quite there, but not quite not ... The kind that reminds me of Roger Maris's Home Run record - he had the record, but with 'special conditions'.

Kel had his 3 month post-RPLND blood work draw on Tuesday and we got the results today. Amazingly this far (4 months now?) after chemo, he is still anemic. AFP is that all important marker, with the 'normal' range defined by our local lab as <7.5 (US guidelines vary, but are consistent in being <10). Kel's last draw was 9.7, although we were hoping for something more like 5 or 6 ... today's # was 9.97.

So, no real change, not up, not down, but still borderline on the 'normal'. Our local onc follows the <7.5 for normal, although the world's expert told me that he considers anything less than 25 normal (by that rationale, Kel would have been considered in remission right after he finished his first set of chemo and his # was 22, and we know that was not true ...).

We are still in the holding pattern, still not clear as to what this means long term. Steady is good, still in 'kind of' remission is good, holding pattern SUX.

Kel's comment today was that he would rather be clear - #'s go down is good, #'s go up is bad but you know what to do ... this #'s being constant but kind of high and don't know what is going on? Well, UGH.

We (mainly he) should be happier than we (he) are (is), but it is good that there is no real change. Local onc would have liked to see lower #s so he has scheduled a CT scan for next week to map, just in case, with CT scan results on 10/21. Assuming all is good, the next b/w should be early November. I probably can't come back to Tucson for that, but seeing how stressed he (we) was (were) leading up to this and right after the appt? I can't imagine getting results without someone there.

My father asked me if longer with normal (or steady) #s is good, but that is a hard one to answer. It is because it is at least a vacation from all things cancer (but somehow it is still almost all we think about.) It doesn't mean anything long term, because if some cancer cells did escape the surgery (for which there is a ~50% chance), then depending on how small or few those escapees are, it just takes time for them to rear their ugly little heads. I think the average time to needing more therapy post RPLND is 6-8 months. When we hit a year with steady #s, then he can breath more, and 5 years out will be even better.

So, we should be happier than we are, and not feeling like we can enjoy this minor triumph SUX. (btw, I am onto the sux section) Steady is good, no increase is good, feeling like the floor will disappear under you any second? SUX.

But, I promised to try and be more positive, so:
-taking a trip back to Tucson to see Kel, see my Dad, see friends at UA does NOT suck. Wish I could spend more time and see more people, but it is only through the weekend.
-David getting to see his Daddy again is GREAT! Whole new playtime and not just with boring old mommy anymore. :) He will also get to see his great friends Ethan and Mollie (on whom I am pretty sure he has a crush) and Doyoon (and Allie) tomorrow. He has been so excited these past few days that he can't even nap, but his excitement DOES NOT SUCK.
-My Dad's baking does NOT suck ... well, except for what it does to the waistline.
and lastly,
-Friends and families enthusiasm and thrill at steady numbers and remission, even if it does come with an asterick, does NOT suck.

Off to get some rest, g'night world.

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