Monday, October 24, 2011

Pajama Sunday

Yesterday David and I declared it to be 'Pajama Sunday', meaning we never changed out of our pajamas. In fact, the only time we left the house was to take the dogs on their nightly walk, in a moment's respite from the rain.

*note: yes, this means that I spent a whole day without showering, but hey, if David didn't mind, why should I, right?*

It was ... GREAT! It was a cold and rainy day here in Oxford and we just didn't want to go anywhere or do much, so we 'pajama'd it' all day. And we baked a LOT - David loves to help me cook or bake lately and is constantly wanting to make 'banana bread', which is actually a double chocolate banana bread recipe from Ghiradhelli. So we made a beef stew (got tips from Dad, but I still need to work on what to add in it), orange shortbread cookies in Halloween shapes, and oh my gosh yummy orange chocolate chip scones (called for raisins, which I forgot, so clearly I HAD to replace it with chocolate).

And then we carved pumpkins. Of course by 'we' I mean I ... I am not foolish enough to give a four year old a knife ... well, not for too long anyway (I promise, I supervised the attempt at carving). I did let David draw on the pumpkins with some gold and silver glitter glue, which he loved.

All in all it was a nice day, albeit sans Kel. Only five more days until Kel will be here again, and none to soon for David who is REALLY missing Daddy. It is another short trip, but at least this time it will be for more than 48 hr (51, I think).

Oh, and before I forget, in cancer news ... yet more unclear, ambiguous, who the heck knows results. Kel's AFP (that all important marker) has been holding steady, but a bit higher than the normal, or at least borderline, so his oncologist wanted to do a CT scan and see. The good news is nothing new showed up. The unnerving news is that there is a 1.8 cm mass where the 5.8 cm mass used to be. Sounds good, right? Well, since that 5.8 cm mass was surgically removed, technically there should be NO mass remaining. The most likely explanation is that it is scar tissue, which can't be differentiated on a CT scan and can only be determined by whether or not it changes in size in future (i.e. at least 3 month) scans. I mean, really, it is 98+% sure to just be a scar from the massive surgery, but no cancer patient wants to get back a CT report that says 'mass'. Back to the world of waiting for a clear answer. The next bloodwork results are on November 8th, I believe. So prayers accepted, fingers crossed, mojo needed for steady #s. We'd really like to at least finish out the year in remission*.

So, what SUX? Ambiguity. Just be cancer or don't - but pick already.

What doesn't suck? Lazy, quiet, uneventful, all-day pajama wearing Sundays. All we were missing was a Sunday paper (comics would have been GREAT), and Kel. Almost perfect.

Off to the world of night-night bliss.

With love,

Sunday, October 16, 2011

New reason to be positive tonight!

We are hoping for the best (i.e. that Kel is now CURED), but planning for the worst (that he is not). And we know that if the surgery was not curative, that there is still the tandem transplant available, but the more I looked into it, with Kel's refractoriness (i.e. not responding) to cisplatin anymore, then the chances of the standard working are low. More than 0, less than we are comfortable with.

So, I had been told about a trial going on at MD Anderson that is using different drugs in their own version of a tandem. Actually, someone I met online through a great site for testicular cancer had told me about it a while ago since her husband went on the trial and is doing GREAT. I contacted the lead doc there and got a response back from him on a Sat night at almost midnight - an amazing doc! He is still running the trial and is having really encouraging results with over a 70% complete remission rate at 2 years (As a comparison, we are looking at less than 30% with the standard regimen), and should he need it Kel will be (likely, after a consultation and workup, of course) eligible and able to go on the trial! Not only will he be helping make headway for future patients, but it has GREAT odds too!

So we have a whole new reason to be positive today. This is the best he and I have felt about it all in a long time. Woohooo science (and scientists, if I do say so myself)!

Just a short note tonight - David and I are doing well. Spent a lot of time outside this weekend enjoying the great weather here in Oxford. Missing Kel, but we will see him in 2 weeks. Everything else is chugging along. I even put in my first grant from here in MS (to the American Cancer Society)! Fingers crossed ... for the next 6 months until I hear about it. The next one I am looking at submitting isn't until July, but I should hopefully find something else to apply for in between.

Obviously going to be positive tonight and say that NEW HOPE doesn't suck. Doc's who are so dedicated (and I don't think it was just professional courtesy) that they respond to emails on a Sat night don't suck ... in fact, I think they are amazing (Dr. Einhorn did the same type of thing). Feeling ok to think long term again DOESN'T suck.

One thing that does ... this darned cold and cough David and I have. That sux. :)

With love and hope,

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.