Wednesday, October 22, 2008

The C-word.

I see Phil told you. It was a very long day. Of Course they are all long in the hospital because for some reason they come in every 2 seconds to make sure the machines aren't beeping too much and that you are only slightly uncomfortable, not really really really uncomfortable. Day 1 and 2, things are pretty touch and go and you understand the vigilance- by day 3 if you aren't discharged, you start giving orders. No wonder floor nurses are grumpy- they have everyone ordering them around when they have seen more than doctors and patients combined. BUT on day 3, all compassion goes and you just want a little sleep(translated as more than 5 minutes before some alarm goes off).

Lily is a trip when they have to sedate her. Yesterday for the bone scan she sang the ABCs intermittantly and fought tooth and nail going to sleep. ABCD now I know QRSUV LMNO now I know...I think a horse probably could have been put down with less than it took. And really I don't know what Lily has against T, but we didn't hear it once. The anesthesiologist warned me that she would be very grumpy upon waking- which is a scary prospect considering she rarely wakes up in a good mood. She was finally out and I watched the bone scan. Since I have no experience in this type of scan, I tried to make my best predictions as her little bones came up on the screen. There were some "hot spots" which I expected because she is growing and the growth plates would incorporate the contrast...but by the time we were up to the waist I had to ask the tech- 'I know you can't tell me but are those normal growth plates.' He said so far it looked very normal. It's kinda like asking the mailman how much your electric bill is that month, but what the hell- they do this kinda thing all day they get a feel for what "normal" is even if no one in my family will ever fall into that category- they don't need to know that. Lily started kicking and screaming about 5 minutes after the bone scan was done and the only thing that would soothe her was me in a standing position with her wrapped around me. She's 40 pounds. 40 pounds is heavy after about 5 minutes. But here's the catch- no pressure on her right side and can't touch the right leg and approximately 3.5 feet of tubes tethering us to the monitors. She yanks off the blood pressure cuff and chucks it at Nurse Patti who is insanely upbeat. She starts telling Lily she has to put it on, leg or arm? I just look at her and shake my head, she immediately backs off. I understand how important it is to monitor this stuff after anesthesia. But seriously, she's kicking and screaming, her blood pressure is NOT low. I try sitting, I'm not a wimp- but I am good to no one if my back goes out. More kicking and screaming- back to standing-snoring, ok.

Sandy stops in to check on the little angel? who is drooling on my shoulder. She is about to go run(that pesky PT test is coming up and despite it's importance in monitoring the fitness of America's soldiers- it really creates this obsession and a bit of stress. Note to self: schedule next surgery AFTER PT test.) She is telling me that she will check back in afterwards... when Doc E comes into the room. F*#@! I know immediately by her face that we aren't getting the pony for Christmas(think analogy folks- I DO NOT want a pony). Dr. somethin or other from Oncology introduces himself. Our oncologist is out of town, but he will be working with us extensively as part of the "team". Dr E says, 'unfortunately the news is bad and bad'. Dude, not only are we NOT getting the Pony- did you have to shoot it in front of us? Ouch. ' It is Grade III....which means they saw cancer cells on the outside of the capsule and the leg lump was a sarcoma'. And the flood gates open...those of you who know me know I am fairly opposed to public displays of weakness aka crying. I'm pretty sure Sandy was holding me up, but again there is this nice fogginess that pops around you so it's foggy. The nice part about the oncologist was that he led off with 'lets make an appointment for Thursday or Friday so we can go over all of this". Yeah I can go back to swearing in my head while random thoughts pop in like "well we have to take her to Disney World" followed by crying, followed by "Lily is the kid that will show everyone how to beat this" followed by crying. I felt kinda bad for the doctors(briefly)- emotion clearly makes them uncomfortable and then they have to work extra hard to look comfortable because there's this scorecard in the military medical system that rates them on compassion and to be uncomfortable would definitely NOT be compassionate... I am serious about the scorecard, I don't just come up with this stuff. Dr. E starts addressing the sarcoma, "we will have to go in and take more tissue out to be safe, but I want her to have a good Halloween so let's schedule it for the first week in November if that's OK?" So I upgrade from leaking a little to sobbing, from here on out we will refer to it as being verclempt(sp?) That's 'perfect' actually, my mom will be here on a previously planned visit- everything happens for a reason.{ Kellie n Rick- I TOLD YOU TO HAVE A DESTINATION WEDDING IN HAWAII! } Plus, it'll be AFTER th PT test.
So we part ways with the downer doc types for the time being, Lily is starting to wake up and staggers around like she's had a few too many- which she has, and the hangover is gonna be BAD. She finally decides to sleep it off on the chair and I pack up the army of new friends and toys she's acquired and we get to go home. I will consider snippet blogging as we go to bring humorous events back on board cuz lets face it- too much black humor(dark not racial) could be a downer and we can't have that. Hugs to all, and as Grandma likes to say -It could be worse.


  1. I just got the email for this blog today. Sorry for not calling sooner. Becky and I are praying for Lily and the whole family. Please let us know if you guys need anything and know that you guys are being prayed for everyday. Sorry again for not getting in touch with you a little sooner. With our deepest love and aloha, God bless from the cabatbat's.

  2. Jen and Buddha-

    I think your blog is great...both informative and entertaining (is cancer supposed to be entertaining?!). PLEASE PLEASE PLEASE feel free to ask us for help if you need it!!! We have an 'open door policy' here at our house (literally..the doors are nearly never locked). Feel beyond FREE to drop off kids, drop in for a bite, grab a snack, etc!! You can even phone me if you need me to come get a kid or two (or three) from you at Tripler...I mean it! Please don't hesitate to make that call!!! love, hugs and prayers - Amy Early


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)