update:
cody's chemo came in the mail on thursday, however he left early that morning for a snowmobile trip.  when you've waited this long, I guess what's another few days? he also did not give me enough warning before he left to get a refill of steroids to last him through his long weekend. I've heard the headaches are intense :(

cody's chemo needed prior authorization from insurance, and we are STILL waiting on that. once that comes through, the pharmacy can ship the pills. the oncology nurse that we work with, is absolutely amazing. she answers all of our questions and literally keeps our medical life together for us. we couldn't do it without her!

it is absolutely driving me crazy that cody has not been on any treatment since november. i have joined a few glioblastoma multiforme (GBM) support groups on facebook. this has been both a good thing and a bad thing. it is very informative. it helps to hear others who share our same story and are living this same nightmare. but it is also very real. and can be very scary. 

cody and i went to see our therapist (whom we've seen in the past).  she is wonderful. we will continue to see her, both together and separately. through her facilitation, we've gained a better understanding of what both of us need to guide us through this journey. both cody and i need to talk more. to each other.  it's not fair, and it's not conversations we should have to be having at our age. but it's necessary.  i know some of you don't agree with this, and you don't have to. cody and i need to do what's best for us.  we both have to be very real and honest with each other.  if i can tuck these conversations away and not need them for years to come, what a blessing that will be. but if something happens, i'll feel i will have been prepared.

a lot of learning has taken place the last few days. life lessons about patience, humility, dealing with anger and disappointment, showing love when i want to scream, being there for someone without judgement and just listening. i definitely have not aced these lessons, but am studying hard and can only hope to do better next time :)

a coping mechanism that i have is to remain numb. that's how i deal. you might deal differently or not agree with me, but right now it's how i'm dealing. the last few days a wall has come down and i have allowed myself to feel. i haven't had much sleep and the tears haven't stopped. but along with that comes a loss of control. i can't get my brain to shut off-about the things that i shouldn't be focused on, and turn on-for the things i do need to be thinking about. everything seems to be a blur. it's one of those times where i feel like i've stumbled. and i'm working on getting myself back up and and brushing myself off.

we have visited with cody's oncologist at sanford. he talked with cody over the phone to try to determine the next step with his chemotherapy. it was decided to stop the 5/23 cycle (5 days of chemo/23 days off) and switch him to an every day plan. the oncologist and pharmacist have worked on putting together a treatment plan for him.

wednesday, cody had lab work completed and met with his oncologist. all blood work looks good so we are moving forward with the plan of chemo every day. unfortunately, insurance requires we get his chemo from a mail order pharmacy. and we couldn't agree more with the reviews out there---this company is not a good option. but, insurance companies know best. right? ha.  the order has been placed. now we have to call the company a million times to make sure we get what we need, and wait for his pills in the mail.  (can you tell i'm a bit sour about all of this?)

when we've told people that cody is going to start taking chemo every day, a common question we've gotten is "for how long?"  indefinitely. he will continue as long as he can tolerate it or it is no longer working. at that point is when we try something different.

we have an appointment back at duke in february. cody will not have an mri until just before that appointment, which will be february 23.

follow up

i apologize. i didn't realize i never posted an update after hearing from duke. cody talked to them on december 23rd after they viewed his mri that we had sent them. they were not as confident as mayo clinic was in regards to the "radiation effect" and the scan was concerning to them. they felt the best plan was to increase steroids, continue with another round of chemo and do another scan in 4 weeks from his last one. with the holidays thrown in there, we still feel like we are in limbo and don't yet have a set plan. cody has increased his steroid dose, but we don't know what this next chemo schedule will look like.

of course, i'm sure you all know we took a vacation to florida over our christmas break. i will get to that in the (hopefully) near future :)