easter

spend a saturday with me

winding down the evening

i'm kind of enjoying messing around and creating these videos. let me know what ya think. maybe i need to just stick to writing :)

let's see, what's new?

chemo: recommendations from duke were finally put into place and cody started his new treatment plan yesterday. they put him back on the 5/23 cycle of temodar. we ran out of his primary anti-nausea pills and forgot to refill them, so he tried his "back up" pills last night instead. yeah, that didn't work out so well. so we will be heading to sioux falls this afternoon and refilling that prescription.

neurology: cody had an appointment this past monday. we finally feel like we've got his medication on track and have gotten his seizures under control. he has only had two since his last appointment in november. however, and this is a big however, his mood and irritability is out of control. i'm not just talking a little out of control-we can deal with it-whatever, let's move on...we're talking, something needs to change!  so here we go again and are going to try different dose combinations of both medications and see if we can start noticing a change. i'm not kidding here people. this is affecting our home life in a big way and something's gotta give. i get it, it sucks. medications are needed and there will always be side effects. but we just need to find what is going to work for us and make our life livable.

here is how you can pray: every fiber in my body feels like it's connected to low voltage electricity. i'm guessing this is anxiety. whatever it may be, it's not fun. i literally feel like i could crack at any second.  i need prayers for peace. for myself and for the kids. also pray for the medical team as they continue working towards what's best for cody.

warning, raw emotion....if you're going to judge, i ask you do not stay.

we've been having good days, but i still feel like i'm on a roller coaster. we shared our good news about cody's last mri and people are relieved and happy. trust me, we are too. but i feel people seem to act like it's over. it's all good now. i'm asked many times a day how cody is doing. and i can tell them, he's doing well. he's tired, but he's feeling good. but at the end of the day, he still has gbm. of course i don't tell them this, what a heartless downer i would be.

unfortunately, there is a huge lack of awareness. not all cancer is the same. just because cody has cancer, doesn't mean we can compare it to any other type of cancer. we are 8 months since diagnosis and im still always researching.

-this is a cancer that attacks the most sacred of all human flesh--an organ that creates our identities.
-brain tumors are in such an eloquent area of the body that surgical and medical intervention may come with a fierce price.
-brain tumors represent an orphan disease, that research funds to push the field forward are not nearly as available as for the far more common cancers
-gliomas are like fingers...cells that creep into healthy tissue. therefore, you're never going to get all of the tumor. it is impossible to get every single tumor cell. recurrence is inevitable
-medical intervention can only do so much, without destroying the patient completely, so you can't be as aggressive as you can be with other organs, because if so, you're compromising the very essence of who a person is.
-the hunt for effective brain tumor drugs has a poor track record
-the largest obstacle to a drug breakthrough is the blood-brain barrier, a natural wall that separates circulating blood from brain fluid to protect the brain from bacteria. the very thing that keeps us healthy, also prevents us from getting drugs to the tumors.

that's the ticket people, the blood-brain barrier. while i get that all advice is well-intended, this barrier is the reason that so many other treatments that are working for "cancer" is not an option for brain cancer. this is what separates it from all other cancers and why treatment is so difficult.

gbm is treatable, not curable. it doesn't matter when it's diagnosed, what you do to treat it, how much is removed through surgery, it always wins.

although things are good now, i'm still haunted by the fact that this is not going to end well.

again, i can't describe the roller coaster of emotions. right now, i'm angry. very angry.