Parental Advisory

Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.

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I did warn you....

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His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.

His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.

He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.

He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.

He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.

I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.

But, he kind of is.

So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.

I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.

He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.

He does not kiss me anymore.

I rarely get hugs. Maybe a couple times a week now.

We are growing more distant as his memories start to fade.

I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.

It's harder to sleep in the same bed.

We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.

I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?

I cried a lot last night, when I was alone downstairs with the kitties.

It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.

It's hard to see him in pain.

It's hard to deal with my own pain, all encompassing.

I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.

I should try to nap today while I have an aide here for a couple hours.

Lately though, my sleep is plagued by bad dreams.

I got 3 hours of sleep last night. Fucking brain cancer.

Updates

Short update, I'm hoping to be back to write this afternoon.

It's rained twice this week! Not enough though to save my garden; only some of my wild Basil is still alive. It's been too hot, too sunny since we lost a neighbour's shade tree, and with my broken feet I have not been able to get out to water it myself.

Sad.

I'm not sure if it's relate to the weather, but Wash's pain has been increasing almost every day now. It really started to get bad about two weeks ago and now it's every hour or two that he needs meds to keep him going.

When he's not in pain, he's able to enjoy reading his LEGO building books (thank you Mark and Dayna) or to build/play with his LEGO sets.

He's been watching some older series too, things he says he can't remember anymore. His short term memory is declining as well. He needs a lot more help with the little daily things, and many many more reminders.

I have to be patient with him, and I'm not always. I could be better.

My foot is still quite sore and bruised from falling again this week. Gorram cats. I don't think I broke anything new; there's no new swelling. I'm getting another x-ray in about two weeks, so unless it gets worse I'll just wait. I'm trying to keep off it as much as I can and DAS BOOT it up if I have to stand or move about.

We had another Eval or two and Wash has gotten to the point where we will have a daily Aide coming over now to help. As of this month (or, the next 2-4 weeks unless it needs to change) we'll have an aide here now daily for 3-4 hours. That will help with some of the daily house needs, at least one meal that someone else can prep for him, and give me some time every single day to rest myself, a novel concept.

Wash also gave the "It's not you, it's me" speech to the (awful) Medical Social Worker. Hopefully we can get a new one (been trying for months) but at the very very least the MSW is aware now that we need someone who can take or return our calls, doesn't take vacation days in the middle of the week or take holidays without telling the clients (us), listens to Wash etc. Tried to be clear that it was not a "you are at fault" situation, but more that the MSW is not meeting Wash's NEEDS, and we need someone who can.

I am hopeful at this point.

The MSW is also working on a grief counselor for Wash too. He really needs to talk to someone, he's so scared of the next phase to come.

Let's see. Our main school in the big tank of danios is down to 2 males. We had 6 one day and one died. I took the dead one out and the next day instead of 4 fish, there were only 2. I never recovered the other bodies. Cannibal fish or a smart wet-pawed Leto, methinks.

However, before the massive die off, I did recover some fry. We have 3 fry in the baby tank now slowly growing into big fish! Can't tell their colours yet, but they will develop as they grow.

My mum helped out a bunch this week and did errands for me, so we have groceries and mail and bills paid. Hurrah! (Step) Dad made Shepherd's pie for Tuesday Dinner night this week; the leftovers might make it to tomorrow even! It's so good it rarely makes it more than a few days before someone in this house eats the leftovers.

Wash and I continue to thank everyone who keeps sending in Lego sets. He plays and builds them. Speaking of thanks, I need to get to work on his birthday thank you notes. Obviously he cannot do them anymore, so it's just another task that falls to me.

I can't even recall what else I wanted to write about. I've been trying to get some of my own rest and recovery in, and doing a lot of watching him and trying to treat his pain. Some days/nights he refuses his medication; sometimes just a couple hours, sometimes longer. He just gets so agitated and then confused and his confusion blocks him from being able to take meds, or calm down.

Brain cancer is pretty fucking awful.

I'll have more later. We're both still here, still alive.

Posts at 1am

Wash has had Xanax and Ativan up the yazoo. He was ok for the two or so hours our friend J. was by tonight.
Then he got super angry and depressed again. He cannot remember so much of the short term stuff, and he was angry at himself- and yelled at me.
He asked for the Chaplain to come, it'll be close to 1am when she gets here. He says he's getting "Ready" and doesn't want to "pain me or talk about it with you".

I'm trying so hard to not cry right now.

I brought him some wood blocks and Legos to play with, because he was asking what was "safe" that he woudn't harm himself with.
The Hospice Nurse on call said she hoped it was a bad night, but that these intense changes, and his night-issues might be his way of trying to say he is ready to die.

Fuck.
NOW I'm crying.

Harbinger

Bad night.

I had to call Hospice twice.

He was uncontrollable. So angry at me, saying the most horrid things.

Then, he started to hit himself.

He's on Ativan and Haldol tonight.

He's a bit more calm now.

He keeps calling Aelphie "Max". "Max" was Wash's old cat when he was a younger kid, that cat has been passed away for many years now. He sometimes catches himself, "No, Aelphie, not Max!" but...

This is a shit awful and scary night for me.

I'll give more details later, it hurts to write right now.

Where do we go from here? Kumbayaya Remix

Friday was a long day. Lots of shit from Wash, and very very little sleep for me.

Then he woke me up every 2 hours.

I made some desperate calls and my mum agreed to watch Wash for the day so I could rest. He did not fully understand that, so for the first while was just angry at me that I was "abandoning" him again.

He came home after 8 hours away and right as soon as my mum left, began to be nasty to me again.

I had gotten one good nap in and a bunch of chores. Not in the best mood to deal with his crap, piling on me.

I called Hospice and let them know what was going on.

After about 2 hours of him being pissed and me doing laundry upstairs, he had some medical cannabis and calmed the frak right down and even apologized.

He went from, "I want to sleep on the couch and even if it's my last night alive I would not change anything!" to "I'm so sorry. Can we please cuddle?"

He's still asleep right now (2 extra hours for him) after passing out after 3am, myself after 4.

I'm expecting the Hospice Nursing team to be here before noon. We'll talk about medication changes and options for Wash to go away to a Hospice Palliative Home for a few days so I really can rest and get some things done around here.

I'm scared. I'm afraid to go another day with the person who wears the skin of the man I love; it's literally a stranger in my husband's body. I'm afraid to go a day without him. I'm scared of him dying away from home, away from me.

I'm scared if he leaves, will he remember me when he comes home? Will he remember home?

Brain cancer is g-dsdamn awful.

Ragute

Hard morning for us both.

Wash woke this morning a bit panicked. He was very confused with what day is it today, who is coming over, what day is it again?, No there's stuff to do!

He got very very angry at/with me when I tried to correct him/give him info on today.

I had to ask him to sit in his "Cool Down Chair" twice this am.

Heavier on the am Xanax too.

I hate the days he doesn't remember. He knows who he is, but the rest is scary details he only faintly remembers.

He knows someone from Hospice is coming over today, but it's not his normal CNA so even explaining that just confuses him more. Same with a new Hospice nurse this afternoon.

I need extra patience on days like these. He's mentally a scared 3-5 year old in the body of a sick 27 year old.

But I always have to be the adult.

It's scary, it's not fair, and it's not fun.

Somebody that I used to know

The nature of brain cancer is such that -being in and of the brain- it is rather unpredictable.

Wash had a much better day today, and in turn I did as well.

I let him sleep in an extra hour in the morning, and he felt strong enough to actually go downstairs and eat breakfast at our table. That happens every few months or so, it was quite nice for me.

He also said he was in much less physical pain today than yesterday, so that seemed to contribute in a positive way.

My mum came and talked to me for a couple hours yesterday while our Social Worker stayed with Wash. He has a medical background as well, so I do not have to worry about Wash's level of care. I got a chance to vent about a lot of things, and just ponder some questions I do have to answer, at least to myself.

Had some of Wash's frat bros come over in the evening to help me watch him and do a few errands. I'm finding that asking for help is not a terrible thing, even if my brain thinks so, and Wash really responds well to company and stimuli that is not just, well, me.

So, today went a lot happier for us both. We had some more good talks with our SW, and Wash had his hair cut and beard trimmed by his CNA who came over in the afternoon. We even got in an episode of NOVA and he managed to stay awake through the whole thing. Then he crashed for about 2 hours.

There are some moments I live in 15 minute increments. Some nights I am tired enough that I do just fall to sleep instead of burning my brain thinking all night long.

I have to remember I do not bear this alone. There are other who have walked before me, and some who can share with me now. It is hard, hard often to remember this, but I have to.

He will be my husband until death. Parts of him might change or be lost, but he is still mine. He still fought and came back from death twice for me. I can mourn, but I cannot let myself forget.

Depths

I feel my husband is no longer "there". It's a person I don't know living in my husband's skin. He's angry all the time. He's sad. He hates to "do" anything that is not play or fun. He won't have a real talk with me, and all my own concerns just become sharp barbs for him to cut me with.

Today, he said if I had stayed on the anti-depressants I would not have miscarried.

I can't handle this. It hurts *so much*.

I don't think I'm ever going to be having sex with him again. We sleep in the same bed still, but we don't even touch, unless he is taking the covers.

Yesterday his new nurse came for the first time to help him bathe.

He's still HERE, but the person I love is gone.

The man I married would not say those evil words. I know it's not "him". That's the cancer speaking again.

I hate cancer.

I am just so tired. So sad. I want to go to sleep and just never wake.

Cancer is not a good death. It does not give dignity.

It takes and takes and takes the very things we love. The parts of ourselves we can't function without.

I wonder just how much "Wash" is left? Is there any part of him that still loves me? I know he remembers who I am, but I don't think he remembers what I mean/meant to him anymore.

It's not fucking fair.

He's only 27. This is just not fair.

Debate answers

We were up until 3am last night. I cried myself to sleep for the first time in a long time.

The past 24 hours have been, in a simple word, hard.

Wash took some time to really reflect on his life lately and what truly has happened in the last two years.

He has been living in a play world I have helped to create. It's partly my fault for just trying to give him the "best" and "easiest" life; though perhaps not the most honest.

We have issues, and for the most part, I just eat the pain and leave it; he's the one dying, right?

It's not fair. It's not fair to his end of life or my own. Neither one of us is happy.

We talked. For hours. Had a real nice "come to jeebus" type of conversation. Wash was able to really express himself and his fears to me for the first real time in two years. He's scared. He's scared of the pain and dying and scared about a tumor that could leave him paralyzed. He's scared about how much of his life he has already lost and what he cannot even remember of the last two years.

He tends to deflect ; that is not the tumor, just his personality. I hope he did hear me when I had the chance to explain to him just how painful his deflections onto me are.

A big part of the stress comes from his just lack of respect.

He had a chance to really reflect and this is what he came up with;

*He does not remember how sick he was

*He does not remember each day how sick he might be

*He recalls he has memory issues, but not how bad

*He did not want to believe in his brain cancer. He did not like thinking it was true he has a terminal cancer

*If he hold onto those thoughts then he does not have to confront his own mortality

*If he does not have to confront his mortality, then he's not really dying/sick

*If he's not really sick, he does not have to listen to Tashi or his doctors

*If he doesn't have to listen to Tashi or his doctors, he does not have to respect them either

*If he doesn't respect Tashi then he must be ok and not really sick or dying

(His logic progression)

We had a good chance to really explore these thoughts and how harmful to him and me they really were. I did contact Hospice yesterday for some help, along with his social worker.

It's so hard. It's hard to love someone you have to watch die. It's hard to fight for what you know and believe to be their best interest when they (sometimes) cannot even see how much they need. I want our life to be happier, even if on a smaller scale, before he dies. I want a chance to enjoy my husband, not my charge. I want to be a wife, not a caregiver.

I had at most 6 weeks when we got married before the tumor got to him. Not 6 years, or 60. I had 6 weeks. 6 weeks of love then my world turned to a hell for months before his tumor caused a visible and almost deadly grand mal.

Respect is so important to really any relationship, but for our marriage it is essential. I know what brain tumors can do, I know how they can change personalities and bring forth anger. I know that and I understand. However, Wash still insists and I do believe that he has to a degree, control. He makes choices on his own. He decides some days to be mean and disrespectful because he can, because he has no other way to act out, and he feels - or felt, that he HAD to act out. I get upset and hurt emotionally when he does those things out of purposeful disrespect to me. Some times he fucks up. Some times I do. I don't get mad or upset at that, life and crap happens.

There have been a few occasions though over the last few years where he has been fully aware of his decisions and the effects they would have on me and us, and he chose to do the thing that hurt me over being honest.

We're being sued now, and honestly it is both our faults. I did not do my diligence and check to see just what he had done when his tumor was crazy. I accepted his word on some things, accepted that he said "I can and will and have taken care of the issue."

He did not.

And I did not check up on his work.

And now I have a suit in court to deal with.

Wash does not want to go into a Hospice home. He does not want to move out of state and he does not want his parents or a stranger caring/nursing for him. He wants to stay married to me and die in this house that we have made into our home.

I am still willing to fight to make this happen for him.

Death is fucking scary. Dying at 27 years old, even more so. I cannot put myself in that place, much as I try. I cannot take his cancer away, or put it upon myself.

The most right now I can do is not be silent. Is not hide his end of life behind a window of "He's fine". It is to be respectful of his wishes, while making sure to have respect for myself. It is not to lie to him, even if it saves the pain. If we're lucky to even get one more whole year while fighting this cancer, I don't want more time between us wasted on lies.

I can be honest about what it is like to face death. What is is like to watch the brain turn on itself, the painful parts, the wonderful moments worth holding onto, and the nobility of fighting when there is no real chance to survive.

I don't want my love to die. I don't want him to have cancer, or to suffer. It's not about what I want, though, and life will sometimes make you watch the thing you want so very much to avoid.

Right now though, it's not about me. It's about being honest enough to help my husband want to live - as long as he can have.

That's where we ended up at today. The house is still needing cleaning. I have errands to run. I have papers left to write and file for insurance. Sometimes mental issues have to take precedence.

Some days are burdens, some days are gifts. Such is life for everyone. Knowing death is so close though, daily it changes my perspectives.

Small thought on today

Part taken from a larger reflection from me (not ready to publish the whole thing yet)

This is how my brain has always been. It's why I take charge with almost everything, so it gets done "correctly" and my brain won't hurt. I don't know how to really describe it, except maybe imagine putting together a puzzle every day that at any time someone can mess with or steal from and then you get a migraine until the puzzle is put back together.

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.