Leto would not leave his side.
Wednesday, November 30, 2011
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.
Tuesday, November 29, 2011
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.
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.
Monday, November 28, 2011
Wash has his EEG tests and his Epilepsy meeting today. I'm beyond worried- mostly that they might not find what is causing Wash to have these episodes. He is not happy right now, and his quality of life is not where it needs to be for him.
I'm consumed by worries.
I dug out $4.25 in change, and I have to hope that that is enough to get us to the hospital and back home.
I have to pray the co-pay is low enough my bank balance still can pay it, or that it's big enough they will work with me and not expect instant payment (like the specialist who charges $150-760 per visit and who I am still trying to pay back from August appointments on) which we can't come up with.
I'm hoping that my cell phone service is not turned off yet- I'm waiting on more of my own doctor appointments to be scheduled.
I'm hoping I'll be able to find money or some way to keep our electricity on after Wed.
I'm hoping I'll have money to pay for Wash's medications this week.
I'm hoping that the $51.66 I have left on our SNAP (food stamps) will in fact be able to last another 9 days. No, sorry, 10 days.
Outside of that all consuming worry that the world I've tried so hard to keep going for Wash (at least until he dies) might come crashing down, we had a few good moments this weekend.
I trimmed the tree on Sat and hung lights and other decorations. Wash had a few episodes on Sat and was not really co-operative with anything I suggested, so Sunday I tried very very very hard to be super patient and just get him engaged with the world instead of sad in bed. We had a good day, I hope to write about it later.
I wish I could fucking just think about how to best care for my husband and give him the happiest days he has left, instead of just being worried worried worried about how I'm going to pay for him to live here, eat, have medication, have power....
Fighting cancer is so much harder when you have to fight poverty first.
Poverty is fought before his cancer.
How fucked up is that?
I just can't do it all.
Friday, November 25, 2011
When every day you wake and are just thankful for nothing more than that, when you find thanks in your husband remembering your name, when you are thankful for just one more day with no bills calling, when you are thankful for what you have had, not what has been lost...
My thanks does not need to come at the memory of a group of indigenous deaths.
Turkey day did not go to plan. We were supposed to head up North to a friends' home but I cocked things up. My doctor did not give me good news this week and I might have to have a small surgery soon if things do not begin to get better with myself. So, this boiled over Wednesday night and I got very very very ill. Could not drive, barely able to come out of the bathroom. I'm still not better today and we're both hoping to see relatives today.
I'm trying to not be scared, or mad, or upset, but it's not easy. I do not want another emergency type of surgery like my gallbladder which melted inside me. I'm trying to stay ahead of my body, but it really likes to fuck with me.
Mostly I'm just scared.
I'm scared because we have so many bills right now. Wash has had extra doctor visits with his Neurologist ($760 per visit) and after a week with insurance fuckery he's finally going in to see the Epilepsy specialist and they won't even tell me how much out of pocket that will be. And then there's my own medical bills for my issues, co-pays, medicine. And I worry, if I do have to have surgery again who will look after Wash? Or even me?
I've just been depressed. It seems like every time we manage to find something with Hope, some little thing to keep us both going, both wanting to live, Life or Cancer finds a way to rip it from us.
Having terminal cancer in your mid twenties changes everything. It's been two years. Two years of living, and not. Two years of heart beats, tears, medication, poison, laughs, hugs. And two years of a "not life". Two years with no paying work, with no schooling, with no real hope for any real tangible future.
What kind of a life is it that I seem to be fucking up so badly?
I miss having feelings. More than just "what else?". More than just a resigned acceptance that my heart beats regardless of my desires.
Two years standing still watching the world, my friends, my future pass by.
It's all just going through the motions. Playing a part.
It feels like a long night swim where the land moves away, the light fades until there are just stars. Just the water and stars. And while the stars dazzle, the water just pulls, and pulls, and pulls, before long the stars are not twinkling so bright, and the water begins to take away the air, just wet, and enveloping, and cold- never noticed before how cold it gets, and then the stars blink out. There is just a feeling of coldness and the urge to fight, where it should be- all used up. The water welcomes and hugs and draws down, and the stars blink out to black.
The honest truth is, some days I see myself sadly and lifelessly going on after Wash dies. And other times I hope with every last part of my being I'll go an hour after he does.
I've had two years of playing "Groundhog Day" with my husband. For that I am beyond a way to describe my thanks. That's two years more than any of us thought when he was in the hospital with a tumor the side of a newborn's head crushing his brain. Two more years of hugs, and kisses, and "I love you", and every little wonderful moment we were allowed to have, than others with his cancer. I know that, and I am thankful. It could be worse, sometimes I am not sure how, but I know it can be.
I just wonder, does it ever get better? Does the pain ever really let up, or is it just the mental scar tissue caused by years of time and distance?
I feel like a fool for trying. I feel like a fool for believing that things could change. I need Hope to keep going, to keep myself living, and I feel like a gorram fool every time for having Hope.
Wednesday, November 16, 2011
I have not been wanting to write lately. More emotions in me than real articulate thoughts.
It is beyond hard to find let alone have a voice. I feel like I've been pretty silent for years and now when I'm told to speak, and speak up, it comes back at me as being "selfish" and "whining". I am genuinely confused.
I'm scared. I'm scared mostly for the future for all the uncertainties. I'm scared of being put in a situation with no reference and expected to know where to go and what to do. I'm so mad lately as well, that life and our future is so gorram unfair.
We had two wonderful days of Hope, and then weeks of waiting for bad news we both know is coming. Brain cancer, two brain surgeries, a year of chemo, and too much bad personal news in 2 years.
It's just so much hardship and disappointment and unfairness, topped over and over.
It seems like I'm being told it's wrong to feel upset at the fucking unfairness. I just wonder when it will end? What if any point is there to keep going, to keep trying when it never works?
It's a hard day, and one with setbacks.
I've taken him back around to his follow-up doctor visits and though it still seems to be in the "not a brain tumor" category, there is still something off. His doctor thinks he is still having some kind of seizures, I guess ones that are just in his frontal lobe- his body does not seem to be as affected, but his emotions are just... uncontrolled. So next on Wash's to do list is get an EEG done (he may have to have more than one but I'm not telling/reminding him of it.) and a 'pressure' test to check the inside of his head and make sure his CSF is not too high. He will then see an Epileptologist (someone specializing in Epilepsy) and they can decide to change his anti-seizure meds, or perhaps put him back on low dose steroids. Not sure what yet, but he's on the right path to get help now.
Sadly though, this was I guess not the news Wash was wanting or expecting. I think he believed he would be told he was "fine".
I am just tired. Physically and emotionally. Happiness seems to me, seems not to be.
Saturday, November 12, 2011
So our state is turning 100 next Feb. Out here in the West we have a long and mostly proud train tradition. Wash loves steam trains (older style) more than just about anything. So, last week when I was reading I stumbled upon a little blurb in the paper saying the old Steam Engine would be heading through our state for the centennial, and it would be doing a "whistle stop" literally down the street from us. (Remember the train tracks a block away?)
So, today Wash and I walked down and waited for the train to come through.
And sent texts, drew in the sand, and waited.
Almost an hour late we heard the loud and rumbly whistle. Wash and I even snuck in a penny to get smashed by the wheels for our nephew. It's pretty cool.
I think he had a good time.
Friday, November 11, 2011
Thursday, November 10, 2011
Even putting my own health issues aside this week has been HARD.
Wash is not adjusting to his meds as he is expected to. He is getting even more depressed; earlier this week he broke down sobbing and told me it was just the same as if he was dead and it might as well "be over with now". That was beyond disturbing to me and I know it was painful for him to go through.
He is also growing quicker to anger and having a much harder time keeping his temper down. He seems to me to not notice when it happens, when it starts to get to be too much for him and he just BUILDS up until it pours down on me. Now, my mum also asked him about this and he told her he IS aware of it, to a degree, but not enough that he feels he has control when he looses his emotional stability.
What this means is that for the past almost two weeks usually once a day, sometimes more less often less, he just gets ANGRY and yells at me, menaces, threatens, and sometimes begins to get a bit physical. This is for me, way too similar to how he acted when the tumor was crushing his brain.
Except that from his last MRI we know there is NO tumor right now.
His seizures are still happening, though I do think they are less often right now. He goes back to all his doctors next week. His Neuro-Onc visits run up to $760 per visit. We've been three times in 8 weeks. Here is where I sigh.
The other option they had brought up was possible pressure inside his head. I'm guessing that there is more to determining this than an EEG, but we'll just have to wait on the doctor to see.
This has all boiled up to Wash's Perfect Storm.
Right now he's mostly pissed at me for "keeping him in". (Loose bed/house rest). Right now his body no longer gives him a warning when he is going to physically pass out anymore (whereas he used to feel a 30-60 min 'heads up') and that's a big frakking danger. It's also colder so I don't like him spending too much outside where his body temp can be lowered- he cannot regulate or feel temperature accurately, so he doesn't realize how hot or cold he is really getting until it is dangerous to his body and health. So we have not gone out as much as we would have the past couple weeks. Wash is none to happy of this.
I have done my best to explain to him the WHY, but he feels and only remembers that is it something he "can't", not the WHY.
Here is where we come into his asshole of a therapist. This being the same guy who upon knowing a half session with me 2 sessions later accused me of abuse to Wash. (I refused to shake his hand the first session. I have Asperger's and he said to me- the frakking therapist- that OCD was an "excuse" and he did not believe it existed) I do not like Mr Wink-Texas. Wash LOVES him, as his therapist validates EVERYTHING he says and tells him all that he wants to hear. A few weeks ago after a session Wash comes to me and says (This is after we both notice his seizures going again) "Mr Texas says I'm not driving to keep you in control, I want to drive again!"
So he yelled at me for a few hours about how it was not fair, he could still drive, he still had his license.... while I tried to wait him out and explain that he was partially blind in one eye and had uncontrolled seizures and fatigue disorder. I would not accept responsibility if he hit someone and as his caregiver I already had that risk, so unless he was willing to separate from me, no driving.
This week, I was almost holding my breath waiting to see what the quack would tell him. It is obvious this guy has never even glanced at Wash's medical files. It's all clearly on there. Even his mental report that we had done with tests back in January.
So, after a personal disturbance in the parking lot (later) Wash's new hangup for this week was that "Mr. Texas said I need alone time or space. So he said I should walk down to the park for a few hours and be alone!"
Wow. This therapist wants to frakking kill my husband or something.
He has memory issues! I can hope he would make it the 4 blocks to the park safely, but right now that cannot be trusted. He says be alone for a few hours.... in a deserted park. Awesome! So no one is there to notice when he has a seizure, or goes into shock when he "forgets" to put his jacket on for 3 hours and starts to freeze since his own body cannot keep him warm. Or, better, keep him alone so if he does wander I'll have the whole neighbourhood to have the cops canvas looking for someone.
He says that since the last time he had a seizure out of the home without me (grand mal on the day before my 23rd birthday) and got home "safe" he'd be FINE.
Guess he does not recall he was passed out in the middle of the street for at least 15 minutes before a family came down it and thankfully did not hit him with their car, but brought him back to the address on his ID card. He says he gave the address, but I recall when he was brought to my door he was limp, weak, incoherent, and had a slight palsy on half his face.
So, my stance on him going out alone for hours?
Like hell, and over my non-caregiving body.
I guess he brought it up to my mum at Taco Dinner and she agreed with me right off and tried to kindly explain to him why she agreed. We'll see.
We also heard last night one of Wash's great aunt's (who he and I were both close to) passed away. She was ill for a bit, so it was not unexpected, but I know it hurts him deeply, he loved his aunt dearly. She also worked real hard to understand and pronounce my name right. I'm not sure if he remembers being told this last night. I am not going to bring it up. He has had too much bad news and heart aches this week.
We're still alive, still barely holding on, but here.
I just wish I had more joy to give him. I give up my own for him, and it's not enough. I miss seeing him smile.
Monday, November 7, 2011
Friday, November 4, 2011
Wednesday was not a very good day. Wash had a bad night; a lot of short term memory issues. He grew very confused, which made him mad - and that mostly came out at me.
He spent a good hour literally yelling at me while I tried to get him to calm down.
I had taken him out for a quick errand but had reminded him that as he was not feeling well and not thinking clearly he needed to stay next to me or hold my hand while we were out. It was really simple, that was the only way I could keep him safe and watch him while we went out.
He... did not like that. Tried to wander off a few times.
He was so confused when we got home, he was angry and upset, but he could not say why. He knew there were things he could not remember, but he was having such a hard time with words, it mostly just came out as anger and rage.
He was FINE, it was just all my FAULT. How can I not see this? He's suffering, but he's is just FINE no he doesn't need help. The whole world is out to get to him... and so on. For an hour.
He finally calmed down. We had a talk and I did my best to comfort him.
I was hoping for some good news this week, but it will not come. I just have to wait the bad shit out.
Tuesday, November 1, 2011
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.