Doves Cry

I am angry.

I don't know if this is a passing thing, a "phase" as it were, or if this is my new state of being.

I have a small cold. I'm not certain how my low grade fever is effecting me.



I am angry.
I am angry there is no space for me.
I am angry there is no safe place for me to talk, to someone.
I am angry that Hospice has to be considered part of the "safety net".

I am angry at my friends, the people I love. I am angry and love them at the same time. It's a painful contradictory feeling.
I am angry at life. I am angry at the inherent unfairness. Of it all.

I am angry that every week I see more friends have birthdays that place them at or right next to my age.
I am angry that every week now someone new is engaged, married, or pregnant. In about 6 months I suppose I'll be angry at all the births around his death date.

I am angry at myself and society. I am angry that I will never be pregnant again. That I will never carry life, that my husband will never live on. That I have no more family with his death. He was my family unit, and now it is singular, and I'm angry that I had so little time with him.
I am angry at the milestones I have and will miss.

I am so angry at society for telling me I am worthless if I do not reproduce.

I am angry at society for telling me I am worthless for being poor. I am angry when people say it is my own fault, my own choices. I am angry when someone implies Wash wanted or asked for terminal brain cancer. 

I am angry at myself because I cannot be fully happy for my friends.
I am angry at comments about couples trying to get pregnant for under 6 months, and how upset/sad/frustrated they are. I am angry when those same people then immediately get pregnant.

I am angry that I have no one to talk to.

I am angry at my best friend for dying, for leaving me. I am angry at myself for that very thought. For not being happy he is not in pain, like he wished.


I am angry when I stare at his TARDIS urn every day and night and wonder if anyone else remembers him?

I am angry that he died before so many wonderful things.
I am angry he will never see the Doctor Who 50th Anni. special. Or be part of it in some way, which he would have; if he had not had the cancer and was still alive.

I am angry at being told I have to change so many things.
I am angry that so many things will change and have regardless.

I am angry that I can remember the last hug I had from him, that I remember it was the last.

I am angry that I have to live a future without him. I am angry that I wake up every morning, and he does not, will not.

I am angry and it feels like a hot weighted stone upon my heart.

I am angry that I feel so utterly useless.
I am angry how disposable I feel. I am angry at the daily implication that my existence is worthless- or worse, costing of others.

I am angry, and so sad.

Android Sheep

Another bad night for me.
Adjusting to Widowhood is not easy. For every reason.

I am sad and missing my husband, my late husband, very much.

I will not be shamed about my choice to be more open and public with my grief.
It is far too stigmatized and misunderstood as is, despite almost all the human population feeling it at some point in their life, or several.

Did I laugh today? Yes.

Am I still sad to be going to bed alone tonight, without the person who should be there? Yes.

Grief is complicated, and unique to every person.
This is mine.

I went grocery shopping today.
I cleaned. Did dishes. Took care of laundry and my cats.
I also spent a half hour sobbing on my kitchen floor. Later on, more tears with a pillow.

There have been more functional days, and days where I've started to have more intense emotions, often overwhelming.

It is a mix every time I wake if I think I'm still dreaming, or if I recall right away that he is gone.

He is my husband. He was my late husband.
Such difference in emotion in those phrases, what information it conveys.

I see time like I never have before.

Loops

Wash had a bad night on Mon.

He almost fell in the kitchen. He said his legs were weak and numb.

Almost 2 hour after that he had odd sensations and pain in his neck.

Hospice sent a nurse over at midnight for him. Very nice guy, B. who checked Wash out.

He gave him some liquid meds and about 30 mins later Wash was moving his legs comfortably.

He is increasing his Ativan and steroids- in case this is from brain pressure from a tumor(s).

Outside that, Wash will have a walker delivered tomorrow for use around home/walking. His balance is just not as safe as he used to be.

If I have the time or energy, I want to mod it like an Imperial Walker for him. A small geek token to the nerd I love.

It could also just be stress; Wash thinks it is. There is a lot of tension and drama going on right now- I won't go into detail at this specific time because Wash has asked it of me, so I will respect his wish as long as he wants or is alive.

Suffice it to say, there are some external stress factors not directly related to his cancer which *I* cannot really remove /make easier for him. I do my best to distract him, but he has to face this part alone.

He slept in until around 11am after finally going to sleep around 2-3am. Thankfully, I managed to fall asleep shortly after him.

He also napped from 3-nearly7pm today. His body has had a lot of strength taken away, and even emotionally draining issues have physical side effects for him.

My mother was kind enough to bring over taco mixings for us tonight, so we could still have Taco Tuesday, even though Wash is not up for leaving the house.

I appreciate every bit of support from my friends and family right now.

Every day is hard.

I feel like this is the start of the last tunnel, the last long stretch.

My job now is just to give him something to smile and live for each day.

Creedence

Another bad night.

He passed out sometime close to 3am. I was up til 4.

He was just so confused and angry last night. He wanted to sleep alone.

This morning his meltdown was because he forgot how to work a dryer. "Settings? What are settings??"

More Hospice folks over today. More pills. More memories forgotten.

I woke up without him next to me this morning. So hollow inside.

Fucking cancer.

Thank you R. for the humor book- was the only thing yesterday I could laugh at.

The Fiddler

I have a few minutes before the busy day today begins.

Wash asked me before we went off to sleep early last night (before midnight for me!) what was *good* about my Tuesday.

Outside my supreme high stress day, I thought more and found several nice moments.

Wash brought Leto outside on his leash to keep me company while I gardened. I grabbed another half dozen ripe tomatoes, I have several pea poles now, my watermelon has just begun to come up... it was a nice way to spend an hour.

We also got to cuddle for a few hours and watch the start of "Dexter" [which neither of us have seen] and even ate dinner together at the same time.

Wash was physically strong enough to go on a walk with me yesterday too.

We got a few nice things in the mail.

Right now, I'm going to try and skip and gloss over the bad parts. For now.

But my day ended as perfectly as I could ask; with him warm in my arms.

Out West

Developments.

I have to have a meeting Monday, and talk with Wash's family.

We had a nice period of about 3 hours Saturday, complete with Muppets. Then, the last straw broke.

I will write more after I talk to his family.

Your kind thoughts and prayers are always welcome and appreciated.

Farnsworth Formulae

Thank you; FSM, the Lords of Kobol, G-d Emperor of Dune, G-d of the Cylons.....

We got the best news we could get today, a nice clean stable MRI for Wash. His scarring has not grown, and no signs at all of new tumors.

We're going to take some time to just relax, breathe, and celebrate a little bit.

Also, Wash's Neuro-Oncologist LOVED the little Neuron Plushie we gave her. Geek jokes, love 'em.

Deny the Lie

This is a busy and stressful week for us.

Wash meets with his Oncologist, his Neurologist will check the MRI he's having tomorrow (again, barring any Insurance Fuckery) and at the end of the week he goes in for a follow up/diagnostic with his Radiologist- since not too many of GBM patients will make it two years out after 42 days of radiation to the brain, Wash needs to get checked. They will do some tests to make sure he is not showing signs of developing different cancers from the treatment (apparently Leukemia is common) and check his mental status.

Wash is pretty scared of this week. I don't blame him. I'm scared too. I want him to be "stable" still. I want another MRI where they tell us, "Nope, no new tumors!". Every time we go the odds grow more and more against us, but I still have to Hope.

I have seen what happens, what is to come for the End. I'm not ready to face that yet. Neither is he.

Sadly though, this testing week always sends him regressing. He is acting about 4-8 years old for the past few days. Very very distracted, just wants to play with toys or games, not interested in talking, reading, creating. He's Depressed and scared. I'm hoping if we have some good medical news this week it will help, I'm also going to talk to the Dr about adding on another Anti-Depressant for Wash. He does not have the high Quality of Life right now he deserves or can have. We're not rich at all, I barely can make ends meet each week let alone the month, but there are things we can both do for free to keep happy- he lately has just had no interest.

I feel like shit as I have not gotten around to writing all my Christmas thank-you notes yet. Dear Readers, they are coming. Wash takes my attention and priority first. I feel bad though still, I wish I had more time or more help.

We have had some good moments in the past few days, absolutely. But, when terminal cancer is literally your life, the day you find out just how sick or stable you are can be defining. And Wash has that day every 6-8 weeks. Mentally, that is a lot of stress.

As hard as it is, and some days I feel ready to give up myself, I want to keep writing. I want this record here after he is gone. I want to be able to really remember how the days were spent, how my emotions played, and I want to recall who my husband was. Not a perfect man, but entirely wonderfully, beautifully, human.

Sadly, even daily time in the garden in the back has not helped his mood.

I have to be the one to be Hopeful for the both of us.

Short Takes 8

Betty the Blazer is back home with us! Yay!

Wash is feeling real depressed today. He's kind of stuck in the mindset that he is "useless" and "non-productive" and therefore should just die/not exist. I've been trying to explain rationally how this is not really a correct or logical statement, but he's in such a funk he's not really listening to me.

I will try to write later, but I'm really trying to watch him today.

Uphill

Battling Insurance today.

"So you're poor and sick?"

"Yes."

"Prove it."

"Fine, here." (papers)

"Ok, but WHY are you poor?"

.... really?

My husband is dying of BRAIN cancer. He will never work again. The State of Arizona does not pay *me* to be a full time caregiver, that's all volunteer. No one "pays" me. It costs money to live and a fuck load more money to not die.

It's a stressful day today. I'm hoping things will get better.

Don't have anything but Hope today.

Sons

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.

But, still

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.

Catdice

I NEED some good news soon.

Life keeps dealing me far more shit than I can take. Too much bad news for both of us.

Time for some cheer, I just wish I knew where to find some.

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.

Shut off

I had lots to say the other day but it seems to have all left me.

We had a good start to the (Jewish) New Year with my family having dinner the other night. Yum. My mum picked up some honey-cake for us too.

Aside from just wondering what service next is to be shut off (we lost internet earlier this week and got it back with some help) and worrying about that, my brain is stuck on Wash. We went to the doc's this week- his ENT to check on the follow up for his eye cyst. I was freaking out as I had received a bill from them for $146~ from his first visit and I couldn't pay that or whatever they would charge to see Wash this week. Thankfully we both got some good news from that trip; the Billing dept had put Wash in as 'No insurance self pay' despite his insurance info being on the paperwork *I* filled out. So, 3 office staff later and two people in billing it was cleared up and erased. Small favours.

Wash meanwhile was treated to a less invasive scan of his sinus cavity and told it was NOT a cyst, or even a tumor. Just inflamed scar tissue. Apparently he broke his nose some 20 years ago and that's just how his head looks in a MRI. Thankfully he didn't need a biopsy, or worse more surgery.

He's just been distant and cranky lately. I ask him for help or to try something or he asks for guidance and then it just... gets ignored. Forgotten. I know that's the result of the cancer, or tumor, or surgeries.... I still get disturbed by it.

There are some other issues brewing as well, but not anything I feel comfortable talking about yet. Basically there have been some statements come out against Wash having comforts, or a Quality of Life- especially if it costs ME anything. To some, I guess his happiness at the end of his life doesn't matter just how much he "costs" to stay alive each day.

I have some ... anger issues, at this way of thinking.

Wash just turned 27. There's a 1% chance he will see 30.

To me, his quality of life is paramount in importance.

It's his life and death. He gets to decide what makes him happy while he can still FEEL happy, and he gets to decide when the pain is too much to go on anymore.

I get so tired and depressed having to explain this to other human beings. To me, it's fucking common sense.

Emotions

I did a video update/blog for today.

I remember we could talk about anything

I've been having a hard time lately.

I have clinical depression and have been dealing with episodes since my teens. A few months after Wash was diagnosed I went on anti-depressant medications. I topped out at 4 different ones to deal.

Earlier this summer for certain medical/health reasons I had to stop taking them. With a very short step-down process. I've been dealing with everything on my own, no meds for a few months now.

I've noticed how hard it is. My Asperger's has become a lot harder for me to control/function around on most days. My depression when it happens, it faster and harder and deeper than before. Medication is not really an option right now, and dislike the kind of numbing it did mentally for me.

I bring this up as it's getting later in September. I hate this month. In 2003 my grandfather died on Sept 16. In the bedroom next to mine. My family and myself had been very close in his daily care even through the home hospice period. That was also the time I had my first real betrayal by my then boyfriend and best friend.

Three years later and my other grandmother had been battling leukemia all summer, while my grandfather's widow was literally trying to die. She passed 3 years to the day from her husband, and 7 days later on Sept 23 my other grandmother passed from the cancer complications.

It was the start of a huge cycle of death and loss that continued for another 2 months that year.

I tend to get 'seasonally' depressed around the anniversary of their deaths every year.

This year it just feels all compounded.

GBM is a fuck awful cancer. I literally live just waiting for a sign or a word that a new tumor has grown back. That's the eventuality. It's a WHEN, not an 'if'. I hate trying to force down from my conscious the worry and the knowledge that waaaaaay sooner than I want my husband will die.

There's maybe a half dozen people in the world with his cancer even 20 years close to his age who have made it more than 4 years. He's almost at 2.

I keep feeling like my time with him is running out. I want to be able to give him something, to take him somewhere, to find a way to have a fucking chance to live before I loose him.

It feels like this cancer has taken my youth and my chance for an "adulthood".

I often and lately have been questioning my own worth and value, especially in this society. The message it sends it really one of "move away or just die". There's no financial system in place for those terminally ill and in their 20's. People judge based on how productive one is- Wash can't do what he used to, and no one pays me to care 24/7 for my husband.

I see less and less humans around. People who will take the time, see us as people not numbers. Right now we are a "cost". Personally, I'm loosing my self worth with the peanut gallery constantly chipping that I have "no" worth.

It's hard mentally for me to continue to keep myself going. I have death and debt to "look forward" to.

I want a life with my husband.

I want a family.

I want a job and a career that pays me for the hard work I put in.

Intangible delicacies.

Atoll

So much for the afterglow....

*Twitch*

Bad day for my asthmar. Kinda shitty air quality, plus hours behind second hand smoke and bus exhaust. Then we got to my mum's house and I had an attack walking in. Right now they've got a little construction going on so parts of the house are sectioned off, but the crap is in the AIR, so it only helps so much.

Cranky today.

We're running into money issues and it is just another stress on me.

Oddly, aside from the money, right now Wash has so few doctor visits. He's "stable" for right now. For some reason this just puts me into such more worry....thing's going so well when is the horror of the brain cancer going to come back? When, that constant fear and feeling like I'm holding my breath waiting for the worst. Right now I should be focusing on other things,the happy things like the time we have right now.

Frak.

My depression, my anxiety are eating me alive.

I tried today to function, to be what he needed, what I needed, and I just failed.

I ended up having to deal with a new crisis this morning, and the little stresses just overwhelm me again.

I feel like I am just growing more and more scared of life.