status report with five sessions to go

holy hell, thank gawd it's friday.  i don't think i could have taken another day of it this week.  my ears are crispy inside and out.  for that, i'm soaking them with domeboro solution a few times a day and applying thick layers of goopy aquaphor with lidocane.  that's also being smeared across my forehead, eyebrows, and tops of my eyelids.  my new doctor explained that some people receive higher doses over the same period of time as i do (those with brain tumors as the primary site) and don't get this red.  others, like me, do.  chalk it up to fair skin and being on antibiotics and xalkori.  some of the nurses have told me i am doing great, the burning isn't as bad as they've seen it.  right now if i had my way i'd have my head in a snow bank. 

i've also been having some eye fatigue, especially at the far reaches of my vision, like if i try to look far left or right without moving my head.  this can be explained by the fact there's some fluid behind my eyes that is in the field of radiation, because it is a place where cancer cells might hide out.  since my tumor was on the top of my occipital lobe, sitting on top of my optic nerves, that area is also being treated and might lead to the tiredness.  basically, i don't like reading for a very long time, or watching tv for too long, or sitting in front of a screen - as i type this i am breaking the cardinal rule and staring at my keyboard.

generally, i'm tired.  i took a couple of naps today so far and i am certain bedtime will come early.  i did take a short walk, but i am not feeling up to much more than that.  i have the most energy in the early part of the day and it slowly wanes throughout.  i am thankful for not having to wake up and go directly to the hospital for the next two days.  right now i am hating everything about that place, except for the people, and the fact they are helping kill my cancer and put my head back together.  the rest - the smells, the parking garage, the way the elevators ding and the x-rays hum - yuck.

good news from the infectious disease front, though, wednesday will be my last day of the vanco and benadryl.  a nurse will come to pull my picc line on thursday.  sweet baby jeebus.  i.  can't.  wait.  six weeks is the protocol for infection in the head (which, if left to fester, will result in meningitis, which is something i learned today, something that did not necessarily make me feel all that great).  so starting thursday i'll go on an oral antibiotic for about two months.  this will serve as "mop up" and also just make us all feel much better about the situation.  so they say.

it is quiet around the house with dad recuperating and me so tired.  we had some help this week with rides to the hospital for me, some screens put into windows for the warm weather, and it has been great to finally be able to ask people to help a bit.  dad is doing well with his physical therapy, walking a bit each day and keeping track of everything.  hard to believe he just had heart surgery a week ago today.  but i should know how that goes.

i can't quite put my finger on why this time around feels so much harder than the last time.  i guess the time elapsed and the many good days in between gave me the luxury of almost forgetting.  i'd say it is also because there is a level of mental fatigue that wasn't there last time.  there was a gradual descent into chemo, surgery, and radiation six and a half years ago.  one thing lead to another and there was a plan with a set end date and it was pretty much adhered to.  this time, i woke up one day, barely even looked at myself in the mirror, and all of the sudden there it was, a huge life change once again.  when i look in the mirror now i forget what i looked like just months ago.  while i have to say on that january day when it all hit the fan i felt very at peace with where i had been, places i'd visited, people i loved, now i am just very tired of it.  i try to remain present in each moment but that's not always completely fun feeling this way, so i try to put myself in places i love - on the dock at the cabin, on the lanai at siesta key - and go there.  making things a bit more difficult is this was supposed to be over by now, but the complications arose.  and there's more to go.  so, stay here, today, i try, i try.

five more treatments, then about a week or two to start feeling a little better, a little less burned.  one week from now it will be over, hopefully.  hopefully the ct scan and appointment with dr. evans goes okay on tuesday.  hopefully this time in a week i will have eaten my fill of ice cream cake and be happy for a break from the hospital.  fingers crossed, everyone.