Tuesday, May 31, 2011

From good to ... well, nothing.

Drumroll please ....

And the numbers are ...

We have no idea. Kel had 3 vials of blood drawn on Friday and they seem to have disappeared. I liked my father's reaction the best - Vampire tea party? That actually got my to laugh through my anger.

Not sure what happened, and we have been waiting and waiting (and Kel has been nervous and scared over these #s) for the AFP. And ... nothing.

We did find out that during the week he was in the hospital getting chemo last cycle that the AFP doubled from 49 to 98. The oncologist said that was a good sign that the cancer cells were dying and releasing 'extra' of the markers they were making. Possible, since the doubling in a week was considerably more accelerated than before.

So Kel had more blood drawn today, we have no idea if the last cycle did anything because there is nothing to go from (darn Vampire's getting thirsty), but the plan is still for him to check in to the hospital tomorrow for inpatient chemo for a week. Apparently, though, there is a hold up with insurance authorization - the personnel scheduling this all forgot to do that part?

I am so darn angry tonight. Well, actually, I was fuming today - on the way home from the cancer center, Kel told me he was afraid to talk because he would say the wrong thing and upset me even more - sweet of him, but I wasn't angry at him, just at everything else. I actually feel bad for making Kel scared of me.

It's funny, I don't actually remember all of why I was mad today, other then pent up anxiety and no answers. We went to the urologist for an appt this am, he decided it is long overdue time to change the stent in Kel's ureter, but scheduling that is a bit hard in between chemo, me going on a week long trip, and more chemo. I actually got the dates wrong and have to call and fix it.

Then I went to work, nothing maddening there this am, although did get news later that all of the cell lines for one project are full of a mycoplasma infection (nasty little bugger that it tough to get rid of, and means that the experiments that have been ongoing have to be all stopped for at least a month). It's no ones fault - that is something that we have been fighting in these cells, in particular, for years.

Then the waste of time doc's appt. No news, nothing. Actually, I get even more mad at the 'well, I am sure the numbers went down, I am not worried about this not working'. Ummm, well, that is great but hell - we ARE! There was a big deal made about seeing the AFP results in between cycle 1 and 2 of this new stuff and being an indicator of whether this is even working or not and whether it is another cycle or the tandem transplant, or a rescue RPLND or ... who the hell knows what else. And ... ummm ... I am sorry, but your crystal ball tells you they went down? Uh uh. No sir. doesn't work. Evidence, please (Dan, btw, shhhhh about this. I am just in mega-vent mode. Oh, and skip the next part too).

So I have decided that anyone interested in being an oncologist needs some personal experience with all of this. Not necessarily a survivor, but maybe a caregiver, or a close family member or friend. Because then there would be an understanding of how that DOES NOT work for us. All of the fear and anxiety has no outlet! Well, except for a nap from Kel.

I have been in this field for a long time, and I saw my mother go through this, and my father take care of her, and her friends love her, and we were close and I was there with her to make decisions, etc, but it is different going through it this time. I don't know if it is because I live it more day to day, if it is because it is my 37 year old husband and not my 58 year old mother, if it is the hope turned hurt, if ... hell, I just don't know. But it is a different take than I ever knew before.

On the upside, David had a good day staying home with Grandpa and Aunt Rachel - he was good for them (I wasn't around for him to defy?). And he had his first swim lesson tonight with his bestest little friend Doyoon - they were adorable and David did a great job. Then, of course, the defiance came because mommy was home, but overall he did well today. And hopefully his stomach is getting better enough to go back to school. pleassssseeeeee???? Can something go right for someone's health here?????

For me, no big health issues other than a complete inability to breath well lately and a feeling like I am being strangled. Maybe psychosomatic and anxiety related, but more likely my autoimmune disorder acting up and beating up my thyroid which is making it swell, and me feel like I am being strangled. No big deal ... except for that difficulty breathing. I will make a doc appt for myself someday. Ha, like I could fit that in.

Man, am I on a bitching role tonight, or what? and this is getting too long.

So, in other good news (and I am not being facetious (side note, that is the only word in the English language with each vowel, once in alphabetical order ... one of my favorite words)): The RPLND surgery is not simple or minor and one of the most important factors deciding overall outcome (survival, relapse free survival, etc) is how skilled the surgeon is. And the best in the country, if not world, are at Indiana University, or Memorial Sloan Kettering (with a smattering of other good ones around). So we talked to the doc and we will be sent to IU when the time comes to see Dr. Foster, which makes Kel and I feel a LOT better.

That, of course, means figuring out how to get the 3 of us there, and where to stay for 2 weeks, etc, but that will be next. We have to figure out how to fund this all (t-shirt, anyone? ;) ), but I am thinking about having a Cancer Really Sux garage sale, or a Support Kel benefit dinner (maybe from a Cordon Bleu chef in training? wink, wink, hint, hint ... in Vegas, of course), or something to help. The timing of this all sux too.

Oh, and to add more to complain about, this morning my friend Christy (AML) also got news that her disease is sticking around and she is checking into the hospital tomorrow (in GA) too and getting ready for a bone marrow transplant. Cancer F'ing Really Sux!

I am sooooo going to cheat here - for tonight's Sux portion, see the entire post above, annd thanks to all who put up with the above ranting and venting. I appreciate it.

G'night, sleep tight, don't let the bed bugs bite.

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