much ado...

by my count I have five teams looking after me right now - in no particular order - neurosurgery, radiation oncology, hematology/oncology, home infusion nurses, and home nurses.  my dentists' office even called today.  i saw two of those teams plus spoke to one on the phone today.  here's what happened.

visit one - neurosurgery.  so far, so good on the wound healing.  it seems to be doing well.  there are a couple spots of dried skin/blood that i can take a gentle face cloth and clean, but that's it.  i will go back on Thursday and have the stitches removed.  the surgeon even said something about me having a perfect or beautiful or good looking head - his words, not mine.  we spoke generally about my third surgery, which is way too far off to be speaking about but these are the things i think of while rolling over in bed at night (note i said rolling over, not laying awake) - like, can i ski with an imitation bone flap (yes, perhaps we will build yours out of acrylic or cement, something more than just wire mesh.  and your deficit is small compared to most of the other surgeries we do, we can see what we can do, you have a great head, we'll see what we can do about making it round again... or something like that...  we can talk about this later) and do i wear a helmet when i ski (of course).  and your hair is growing in (that's what hair does). 

and then the subject of radiation came up, and can i start today, and well, we'd rather wait until days 17-18 or so, and this is day 14 (post-surgery) so let's wait, we really should wait, we really don't want any wound break down.  so, we wait.  i was crying last night at the thought of starting it (crying at the thought of the crappiness of it all, in fact) and here we are, not starting it.  something i figured would happen but still, it felt good to get some of that crying out.  so, it will wait until Monday.  dr. rengan said we could start Thursday or we could start Monday, and even though i am antsy to get going, i want to get in there and treat this crap before more tumors start growing, Monday is a good day, twenty-five sessions, five weeks, finish on a Friday in spring.  i'm immensely sad because my radiation oncologist is leaving penn and i'll only have a week with him before he goes.  i know i will be in good hands when he is gone, and i know i can always call and he'll always be my doctor, but it has been six crazy years since he first treated me and in this world it is hard to say goodbye to people who have taken your life in their hands.  they are family, and while kicking and screaming is out of the question, it is hard to part ways.  these are people who have taken it upon them to find the best ways not only to keep me alive, but to allow me to thrive, and i am forever grateful.  so, i'll get to see him in person next week and after that i have someone new to find this thriving life with.  so, that was the phone call, we wait until Monday.

and my second in-person visit was with my oncologist's nurse practitioner, and frankly, i really look forward to these appointments because (a) she is really fun and (b) it is daunting, but never as daunting as seeing dr. evans.  we were following up after everything, and i am doing well, i'm tired because I've been through the ringer, my heart rate is no different than it was a month ago, i had a pretty nasty infection (scrunch your face up when you read this and you'll get the delivery right), i can stay on lovenox as long as i feel like giving myself injections, vitamin K is different than potassium in the medical world (here's where she said i was smarter than most patients, knowing K is potassium and being worried about eating beans and yogurt if i go on Coumadin, which is essentially rat poison, but i digress...), and i have an appointment with dr. evans in april, the 16th to be exact.  so. 

now, i'm home, i just slept three hours, it is grey grey grey outside and maybe it is time for a healthy snack.  my stitches are itching like crazy and i am doing everything in my power not to touch my incision.  i don't want that bastard to get infected.  these antibiotics had better be strutting their stuff all the way up to my head, killing the little bacteria that got me here in the first place.  well, not here here, but waiting for radiation well into march.  le sigh.

the best part is, as bad as it has been, there are moments where we are all still able to smile, even laugh.  it is good to see them laugh, it feels good to smile.  it is hard work, but we are all doing it.  every single day.