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.

Cat tails

Friday was another day he needed me. Started out with a bad morning, cursing at me not knowing who he was and all the fun shit that goes along with it.

He came back to himself and calmed down in the afternoon, but was left VERY tired and confused.

Saturday I cleaned for a bit. My mum came over and looked after Wash for a couple of hours so she could help him and me. Friday was also the 5th anniversary of her mother, my grandma, dying. Friday morning was a bad day for my mum as well. The client she caregives for passed away. She's been caring for this elderly lady for years during her illness. According to my mum and her docs she was not getting better and suffering a LOT. She went in her sleep, or at least peacefully. She's not in horrific pain anymore.

So my mum came over and had Wash help distract her.

They made me dinner. Or, I should say, my mum helped Wash create a "date night" dinner for us. She helped him prep everything and write down step-by-step on how to heat everything up and made sure he didn't sever any fingers in the kitchen.

The meal was delicious.

We watched Lord of the Rings (extended edition, Fellowship and Towers) and will probably finish Return of the King today.

I worry about my mum. She has been working since she was a teen, about 5 decades of work. She is always busy, always moving. We nicknamed her "the hummingbird" for a reason.

I worry what she will do now. She has no real 'job' right now. I worry a lot about her.

A lot scares me right now. Fears are easier to his from in the day, sometimes, but they don't go away.

........... He put the garlic bread in the shape of a heart last night. I'll post a pic later. The man loves me, that I know. It was cute.

Shades

I am not sure if Wash was up too late, spent too much time socializing, or was just emotionally upset.

Regardless of the cause, the effect is the same.

Bad morning.

He did not want to wake up to the alarm. He got snappy when I tried to kiss him awake.

He bitched. He yelled at me. Said some obvious lies. "You were up til 2 keeping me awake!" (Tucked us both in before midnight)

Did NOT want to get out of bed. Did not want to remember to take his pills.

Massively cranky-pants.

It's been almost 3 hours now and he's starting to come back to 'my' Wash.

I don't know how the rest of the day will go.

These are the -smaller- scary moments of cancer. He remembers some things, but he can't tell his memories from fiction and reality. What he remembers is often incorrect, but to his brain it IS correct.

It's not that scary for me today, I have the belief and hope he will 'come back' personality wise later today. Maybe his brain just needs more time after his sleep-boot.

The shit-your-pants part comes on the day he can't remember anything, even with time.

And that day eventually will come.

Right now I have to bear the pain and just watch him and wait.

Can't take the sky from me

To everyone over here from Reddit, welcome! Just so you all are aware neither myself or Wash currently or previously has had a Reddit account, but if I make one I will post my handle here as well so you have verification.

Now, for all those who have sent us your prayers, goodwill, wishes we do thank you. Every little bit helps in some way.

Monday was a day of Hope for us. Got a call from a friend that needed a last minute babysitter for his two girls, so we went over. They are 2 and 3 now and we've been watching them off and on since the baby was little so the parents could have some time. Good parents, and really adorable girls. What was surprising to me though, was Wash. He not only had energy for the few hours we were there, he was really helpful and a good sitter. We played tea party and jungle house, he got to help me feed the girls, he played hide and seek.... he was really having fun being around them. Seeing him smile and laugh, really laugh, it was payment enough for me.

He does love children, and it soothes me to see him still being happy around them. They don't judge him, or comment on the weird way his hair has grown back (no, he doesn't shave in patches, that's just how it grows after chemo and radiation) or his scars.

He spent the rest of Monday recovering, but smiling. I love to see him smile.

Tuesday brought yet another wonderful Taco Night with my parents. It's good to catch up, bond a little, and my mum can stuff Wash full of food. He's over 155lbs now steady, so 160 is his next goal. He was 180lbs of muscle when we married. When he came home from the hospital he was 129lbs. Keeping him above 150 means that if he needed to go back on chemo suddenly, he could. Though, if and when that time comes, it will be up to him more so than just his weight.

I'm hoping the juvie fish will go to a new home this week. I've decided that the fry I get from cleaning the big tank will just go to Jayne the Betta, since he loves eating live foods. Circle of Life and whatnot. It's still weird to me to feed live food to a pet, but that is my own culture making me uncomfortable, I have to remind myself that feeding fry and brine shrimp to fish is "food" not "cruel".

We have a friend coming over later today, spend some time with us, eat and maybe catch up on Dr Who with us. Wash is the one who loves to socialize, so I encourage him to, and try to keep friends coming by to see him.

It's another day of him waking up, knowing who he is and who I am. That's really all I let myself ask for, and a day that starts like that and ends with us in the same bed together is a good day. Those are really the best days I can ask for now. I don't get 30 or 50 years with my husband and best friend. But I might get 3. 3 years with him knowing my name.

Frak cancer, right now he's still my leaf on the wind.

Spirit in the Sky

I want to be clear on something- I love Wash. He's my husband and my best friend. I love him.

That being said, I can sure as hell get angry at the cancer in his head and the effects of trying to kill the cancer and not my Wash.

He had a BAD day on Friday. They are the kind of days that the oncologists and nurses and friends who have gone through it before can warn about, but never really prepare you for. (Thanks Jo & Rose!)

He was just not Wash on Friday.

He was angry. He was forced to confront some issues in his therapy and they came out on me. He can't exactly take his own brain out and yell at it, so I take the brunt. That part sucks. I don't even know really how to describe these days to his friends and family- the close ones that need to know the details. Remember that Wash can pull off "normal" with a hat for a few minutes to most people, but thankfully he has found some comfort with a few friends just being himself.

He was speaking in the same voice, and it was the same body. I can really only describe it as close to how he was acting when the tumor was in his brain- his voice, his body, but not his words or his mind.

MY husband would never say such frakking evil things to me.

Cancer? It has no reservations about saying the most hideous thing and with the sharpest of points. Case in point- I'm trying to help Wash, trying to explain that Friday I was not the enemy but he might need more help than I could give. I have to think it was the cancer or some damage that caused him to say such nasty things to me.

I watched a film last night that was a small companion documentary to a book I read a few months ago on forgiveness and grace. Even knowing that it is not always my husband's WILL that causes him to do something horrid - that still needs some communication of forgiveness to pass between us. We're not just roommates. We're not just best friends. I'm not just a 24/7 nurse- that is my husband slowly being eaten away by cancer in the other room, our relationship greatly impacts his length and quality of life.

We don't go to bed angry. For me the chance of him not waking up tomorrow is always so great I never want to risk sleeping away out of anger again. It really only wastes time we don't have.

What this means though, in reality, is that I have to be willing to forgive ANYTHING by bedtime.

This way of thinking, which is a far cry and change from my own youth, proves challenging to me sometimes. I find myself forgiving Wash with more ease, but feeling more anger at others who I see as wasting my time or energy. It's not really mine, for right now Wash is borrowing it all until he passes. I see things as my time can be wasted, but not his.

It all has to end with letting it go, though.

Friday was a monster named brain cancer living in my husband's skin.

Saturday he seemed to come back. That's the terrible nature of this. I can always always always hope that he will be back to "Wash". Cancer says I really never know who he will be when he wakes.

Every new day I am thankful that he is still with me. 3% make it 18 months. He's at 23 months now. He's a person, now defined by a statistic.

My goal, my challenge, is to make sure that every day he is alive here, now, is better in quality for him than death. Some days I think I fail. Some he falls asleep happy and telling me he loves me.

He's the other half of me. He's my heart. He's the person I would take cancer for. He's the man I'd wait 2000 years for, locked in a box.

How can I stay angry at the person I'd fight hardest for?

Sometimes.... I wish it was not real. A great story, a great myth. I could conquer mountains, Hell, and gods for him. I would have that River Tam shot, saving him, and in the end, a medical CURE would be found.

I remember it's all real instead. There is no magic cure. Fighting won't really save his life. I can't bring him back once he's gone.

There is no "set" ending. There is no happy news or 11th hour reprieve. Real life is so far away from fiction, the little minutiae of living each moment. Real life means now knowing that the "happy ending" only happens in fiction.

I don't want it to be over

The last two days have been....hard.

I'll get into it more later, too many doc's to visit today. I feel like shit.

I am beyond sad. I feel almost like a shell.

I worry that the marriage is just in name now. He's not himself. He hasn't been for a while.

My mum commented on it the other day. He can seem "Wash"for a few hours, but it rarely seems to last a whole day anymore.

I don't feel like a "wife".

I feel like a servant. Always on call. Worked for 23 months now with no "after work", no "vacation/holiday", no "respite time". Occasionally (few times a year) I might get 2-4 hours without having to care for Wash.

He's not treating me like a wife, or most days now even like a friend.

I'm tired and upset.

My husband was my best friend.

And now I feel so gorram alone.

Opportunity

This is Wash posing with 20-21 months worth of his meds and mine.

This is what is looks like to be ill. This is the other side of brain cancer.

Imagine each of those bottles filled with pills- all processed into his body. The cardboard and glass bottles? Those are from his chemotherapy- a year's worth of poison.

How do we rack up thousands each month for medicine costs? See above.

(And yes, Leto snuck into frame on that first shot)

Baking chocolate

I'm doing better today. Every day is a bit of a struggle in some way- but I suppose that is true for anyone.

I have not been able to get any reading done for myself. Nor have we watched the most recent Dr Who episode. The part of me that enjoys those things, reading and sci-fi- all the things as it were- feels numb still.

I feel overall like living one day at a time is easier, but trying to really feel my old personality is hard. To face what I have to I have to dissociate. It drains away the parts of me that are- me. My 'colour'. My happiness.

I can be rational this way. I can be productive and functional. But I feel like a machine wearing skin, so much less than human.

Right about now we could use a good fundraiser. It's absolutely horrid and inhumane, but I often helplessly find myself wondering how much longer I can afford to care for Wash. When he's at his last month/weeks Hospice will kick in and insurance covers that. As long as he is "stable" it is all out of pocket for me, and that's not cheap. Well, his medication runs about $1000/month now as opposed to when he was on chemo and his meds were $11,000.00-23,000.00/ month.

Wash gets $740.00 a month from social security and then we subtract out $115.25/month for his insurance premiums which are deducted automatically. We also get $280.00/ food stamp (no cash benefits) for each month. This is not a "supplement" for us, this is my food budget. It is up to me to fill the gap each month for rent, electricity, gas, car insurance, pet food/supplies, entertainment, co-pays, clothes, sundries- Wash has special needs now after brain surgeries and a year of chemotherapy. It's a frakking big gap and it exists each month. Neither of us have credit cards.

Sigh.

So, it's the rational practical part of me that each day, sometime each week wonders how much longer I can really do this. Emotionally I am honestly not sure which is more detrimental to me; taking care of Wash or worrying how I will be able to afford to take care of Wash.

I am happier though, that as opposed to a year ago I'd like to think that I have grown enough now to be able to ask for help with more ease.

Any of our readers want to help raise some funds?

I had a chance last night to watch "The Blind Side". I can see why it won so many awards. Wash took the time while I watched my "Sandy chick-flick" to catch up with some friends in town. He got some good conversation in and socialization both of which he needs. Then we watched "Trekkies 2" together and laughed our butts off. After attending two cons with Wash this year I can say I have a much greater appreciation for the documentary now. I will say- I was a bit sad they did not follow up on the family that dresses in Trek uniform/works as a dental group. They were so interesting on the first "Trekkies" movie and I would have loved to see how the family has grown/changed in the decade since the first film. Aside from that, it was quite enjoyable and I know that Wash appreciated watching it with me- he is certainly the bigger Trek fan among us.

I have had to stay away from the news lately. Watching so many people -many of whom have so much money and power that 'worry' is a foreign language to them- speak of people like my husband as disposable, as trash, as human beings who should just die and unburden society from the expense of their birth and circumstances.... it makes me sick and mad. Mostly, it makes me angry, which is really more akin to dangerous. I tend to be able to remember a grudge for life, and I have made a few since Wash got ill.

My reaction tends to be to want to retaliate in the smartest way possible. Sometimes that means waiting. Sometimes that means making myself better, smarter, stronger to challenge what threatens me.

I turn 25 this year. In my state that is the minimum age to run for city counsel or Governor. Right now my focus is Wash and will be until he dies, hopefully the way he wants, when he wants.

But the talk of turning human beings into numbers... the stripping of rights from women and the LGBTQ community... the unions collapsing... social security- literally the namesake of our social responsibility for care of the elder, ill, infirm, widowed- being robbed ... and a war longer than almost any other in our 200+ year history taking money, time, and the lives of our citizens and those of civilians overseas...

Frak.

I want my country and my state to stop tearing every person and thing DOWN and work on building UP for ALL.

That got offsides, didn't it?

I guess being this poor, this sick, this desperate has given me an insight at a young age that some politicians 60 years my elder could not empathize with.

I want to hope that things will improve, will get better.

For all.

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.

Worries

My goal for this weekend is to let go of my fears and worries; most importantly right now no worries about Wash's health this weekend or our need income terribly situation.

We have been given the chance this weekend to just take a few hours to be a couple and I want so hard to focus on that.

Just breathe.

And Hope.