Minor Complications

I have to take Wash to the doctors' again; he's either having night seizures again/still or has

developed Sleepwalking (which may be seizures as well). To keep myself from freaking out

with

thoughts of him falling to his death on the stairs at night or just walking out the front door, I'll

tell the funny things he does in his sleep;

*Turn off all alarms on clocks and cellphones / re-set the digital clocks

*Tried to make the bed - with me still in it at 3am

*Tried to fold a blanket- again with me in it

*Took a jar of jelly out of the kitchen and placed it on a bookshelf in the living room

He will see his Internist today and hopefully his neuro will get him in in the next few days. The

last few times it has been "not a tumor". Every single time this happens that is what I wonder

and worry about; is it time now? Has it finally come back? This cancer has a 98-99% rate of

return. It's a "when" not "if". Neither of us is ready to fight another tumor. He's had two years

post surgery. That is both so short a time and so long all at once.

It does help to explain some of his behaviour this past week. His 4 hour afternoon naps make a

little more sense.

Right now every bit of good we can get means so much. I know but I'm not ready to admit

what is to come. I'm not ready to face the pain and grief that even denial will not save me from.

This story, our story, will not have a happy ending. Interludes perhaps, but little glioblastoma

multiforme does not make for "ending" that society loves to see. There is no cure coming

down the line. I HAVE to make the best of what we have, because there is no deus ex machina

for this.

So, we are going to try and go out to enjoy some lights tonight. Do some things with the

family. It is still my job to give him a Quality of Life high enough that he wants

to live. Sometimes that means holiday light displays, hot chocolate, and Tashi wearing closed

toed shoes. And snow.

Keeping secrets

I came to a realization this weekend; one that is simplistic and complicated at the same time.

Life must be unfair. There is no way- believing in a deity or no-for life to BE fair. Fairness implies some level of choice; either on the giver or receiver's end. Some things, some of the most basic things, there just is not that "choice" that is held in an illusion.

Wash did not choose his cancer.

He did not choose what type.

He did not ever choose when it came.

He did not choose the size of his tumor.

He did not choose the location.

He was "given" the choice to live or die. Duress takes on a much more living definition than flat words in a dictionary.

Wash spent a lot of time after his EEG recovering. The neurologist says it did not show evidence of epilepsy, but he did have physical sensations and issues on his right side after a light test; so there is something going on. He has some specialist conferencing about what new anti-seizure medication to switch him to. I know a clinical trial was mentioned, but I'm not sure if he qualifies due to his cancer status.

We have had some good moments lately. I hold onto those. I need to write about them more, find a way to hold on- there will never be enough for the short time I have my husband.

We spent most of a day watching "Fringe" in bed. He was still very tired and in a lot of pain on his right side. We watched, looked for the hidden Watchers or Auggie (August) and cuddled. We spent a lot of time in the moment. For us right now the future is so uncertain and painful to imagine; it still physically hurts to think, to mostly know, I will be a widow in my 20s. Thoughts hurt. The future will hurt. So, we spend time in the now.

We spent some nice time as a couple. Just a few walks, I cooked a little more than normal, and some extra "adult" time; time we both enjoyed getting to spend. It did not feel rushed or pressured, like we 'had' to. I simply tried to be in the moment and to enjoy sharing that moment with my best friend, who is also my husband.

Sunday was nice; Wash had not felt as good as that the whole week; his physical strong point. Mentally he was a bit slow, but I have helped him on those days before. The morning I spent in the kitchen making some vegetarian Crock-Pot chili / bean stew. We left that to cook and make our house smell awesome, and get me away from the Fair down the street with thousands of people. (I'll have to deal with that shit again come the New Year's Eve block party/Fiesta Bowl)

We headed across town to my brother's house and got to play with his new home theatre system; Wash had never seen "A Clockwork Orange" before, so we figured as good a time as any to see it! He seemed to enjoy the film, at least from a directorial standpoint. We came home, drove without any real trouble thankfully and noticed my odometer was close to a really cool number; though we did not hit it that night.

We came home for dinner and had a friend come over with his version of meaty chili- I had also made a cornbread with honey-glaze. To say it was a hit would be ... underwhelming the passion with which it was consumed. It was cold and rainy outside and the chili was warm and so delicious. It was a really fantastic evening, and in a week we should hopefully have one more for dinner- our friend comes back from Argentina at the end of this week. I cannot wait to hear all her grand adventures and see the photos.

We ended the evening with cookies I made and some lively BINGO games.

Today dealt with the neurologist again, and another rainy day. Though, we did get to drive the extra mileage needed to make my little Aspie brain so so so happy. 16 years old and my car hits this;

There's always more, but for today, I'm trying to just hold onto the good and happy and lucky.

Survival

So Wash was admitted into the hospital today and thankfully I got to take him home.

We were there for about 4 ish hours; he had his tests and though he did not have a grand mal, he had some seizure/unusual brain activity.

They kept him for observation for a little while after his tests. He had to be taken out in a wheelchair though, afterwards his right side was quite weak with bad neuropathy. He managed to walk to our front door by leaning on me.

He fell asleep when we got home for about 3 solid hours. Our kitten Leto did not leave his side. When we came home he just snuggled up right next to Wash and stayed there; he is still just a few feet away right now. He loves Wash so much, it is really touching.

So, I take from this Wash will have his anti-seizure meds changed - we see his Neurologist next week. His right side has since equalized out mostly, so he feels almost back to his baseline.

At some point, I will have to cry. It's a lot of emotions for me to go through and process and there has not been much in the way to get me relief.

Everything stays the same, and changes at the same time.

-On top of that, we found out today Wash's hospital was robbed; their toy donations stolen. http://www.azcentral.com/news/articles/2011/11/30/20111130phoenix-hospital-toy-donations-stolen-worth.html

We try to donate as many toys as we can afford every year; sometimes only 2, sometimes more. I am ok if I don't get anything, but for the kids in the hospital- once you have spent at least half a month of your direct life living at the hospital, you understand every chance at a good day means a lifetime down there. A Christmas where each kid feels special and loved, magnify it by a million for the people who have to live there. They've lost 90% of the toys.

Even if you are a new or casual reader of my blog here, you know I ask for help for Wash. Well, I'm asking for a little help now too; Dear Reader if you were thinking of doing something for Wash this year, I thank you and encourage it (more on that in a later post). However, if you were going to help me in a personal way, I ask this instead. I'm not a material person, I have gone without before and can do it again. Please donate a toy at our hospital. I might be lucky enough to have decades of Christmasses again, these kids don't. Like Wash, this might be their last.

I'm running on about 5.5 hours of sleep right now. I need a good rest; I have my own doctor visit tomorrow.

Bright side; we have lovely friends who come to help- they bring dinner.

Laser Cat

One day down, just have to make it through today.

Wash did not get all his testing done yesterday. We arrived thankfully early for his appointment (paperwork! ) and the first problem arose; no record of his appointment.

Seriously?

They knew who he was, one gal even remembered seeing an email about him.

So we waited, and lo and behold, the very time we were supposed to have an appointment the doctor was free!

So we had a long visit, the doctor had already had a conference with Wash's neurologist about him and we were asked various questions and Wash had a few physical tests.

The specialist does not think he has epilepsy per se, but was concerned about some small seizure activity in his damaged frontal lobe- it seems to fit what Wash has been feeling.

So, tomorrow they want to admit Wash to the hospital for more tests. They want to take him and try to induce seizures in him. Now, rationally I understand the need for this test, and the information it will provide. Also, he will be in the hospital, so if he does have seizures, he is in the "best place" for it.

BUT, even knowing that, it is scary as hell for me to know they want to put him through that. I know he is scared and I am too. No one wants a seizure, and to have one if not more induced... not a pleasant thought.

Thankfully I am feeling better this week than I was last. I have more tests of my own this week, but I am a little more hopeful right now that I won't have to have my own surgery right now.

I have to rise above my own feelings and be strong for him for this.

Brooklyn, Bronx, Harlem??

So the good news from yesterday was; no new brain tumor!

The bad news from yesterday was; no new brain tumor.

So, it's not a tumor. His doc also said he did not show any significant radiation related scarring either, but she agrees that he is "off" from where he was 3 months or even 1 month ago when she saw Wash last.

His seizures are not being controlled properly anymore. Medicine change.

His SSRI is being cut back too, and his anti-anxiety is being upped in dosing.

It might be increased pressure on his brain; that's next on their list to check him for in 2 weeks if he is not improving.

It might just be the way his brain is.

Sadly, I guess with brain cancer when it's NOT a tumor it can be hard to deal with.

Wash is ... dealing, I guess the best way he can. It was good news, and it's confusing news.

I have no other option right now but to just take it one day at a time with him, watch, and see.