Saturday, March 31, 2012


I let him sleep in for more than an hour today.

Did not help. He woke up physically rested and feeling "strong", but mentally he is off today. He has control issues and keeps showing some obsessive behaviours. He's picking at parts of his face and back and is getting to be a bit bloody. I'm going to speak to his nurses, I can't make him wear gloves every hour. I'm also watching him a lot closer, which takes away any real chance of "free" time for me, I'm stuck being close enough to him to make sure he doesn't dig a hole in his body.

I know it is not him, not my love. This is a side effect of his meds, or scar tissue, or something else. I can still hate it though.

He's so negative and nasty. He thinks he is being funny or clever, but he is just being a horrid human. The things he says... sometimes he is aware of them when I point it out, other times he literally does not remember the words that just came from his mouth. He will attack the people on tv, that is one of his more common ways to express. Gender, sex, race, all these things that I know he has never had an issue with in his life, but he sounds like some horrid extreme opposite of who he was. It always takes me by shock. He's better about not saying things out loud with a few people around us, but I see it come out when he is out in crowds. It's amazing in a horrid way how physically damaging the brain can change people in such complete and fundamental ways.
I always wait for it to pass, and for the most part after a few hours or a good sleep, it will. *My* Wash will come back, along with his sensibilities and his true kindness. Brain injuries and cancer can be so devastating and challenging.

One of the downsides is when he gets in these kinds of moods I get so tired from having to be so patient when he says things that make my head want to burst. I have to be patient and kind, and unlike being polite to a debate opponent I can't just tear apart in front of him WHY it is inappropriate/not kind to say those things. I have to see if he even knows or remembers or is aware he made the statement, tell him, wait for him to calm down, and go over why it is not "ok" to say out loud, or why he may get weird looks if he says it out loud and out side.

I love him, I hate the parts that have been stolen away by cancer and surgeries and a big fucking tumor.

Meanwhile I wait for an apology 8 days overdue. [Not Wash] People I deeply love seem to hurt me the most when I'm let down.

More later, pill time again.

Backfire, Bad

We have internets again! Can has series of tubes!

I'll write more later today. So much has happened this week, I get a bit lost with where to start.

I'll sum for now. Wash had a good evening with me, he even went for a walk Fri! He woke up in a fairly good mood today, though he slept in an extra two hours. We have a small trip/walk planned for later today and a goal to find a windchime for our backyard.

I have to focus on the happy moments that fill the scary spaces and times between.

Thursday, March 29, 2012

Internet is disconnected again i hope to have it back on tomorrow. Bought groceries this week instead of paying cable.

Wednesday, March 28, 2012

Growing up

I have a few moments between emails today while Wash is getting his massage/pain therapy downstairs.

He's doing better. Mentally at least. I managed to get him outside of the house yesterday for dinner at my mums and a walk. Small steps, but it is something. He's coming away from his scary weekend, and is acting more like the "Wash" I recall, his personality is coming in a bit more. His meds were adjusted, so I am hoping that was the right change he needed.

Thank you to all the friends and Dear Readers who have left nice comments for Wash (us). I do read them to him and he soaks up every single kind word right now.

I've been working a lot more in the garden. More solar lights, more plants, more herbs, and my folks even gave me an old trellis they had but were not going to us! The garden is a way for me to be around living things and keep sane, and it's a nice space for Wash that reminds him of happier times and our potential as a couple and family.

The kitties have been more social, even though it is getting warmer. I am shocked. Aelphie comes downstairs some days when Hospice folks are over, and Leto of course greets everyone and even now has a few people he knows will let him climb in their laps.
We had a small sad moment yesterday though, Leto has officially outgrown his (Adult Cat sized) harness! I was watching him the other night and he was walking around like a kid on all fours wearing a sweater WAYYYYYY too small. Kind of cute, but that must have been tiring for him! It's not the girth, that was fine, but the length- he's getting even longer and lankier. So, I guess I need to take a trip to the petstore to get him a dog sized harness. Leto has been CRAZY this morning, running back and forth to all the doors, sitting in front, waiting and willing us to take him out, but he knows he doesn't go out without a harness and leash (his collar is always on) so he just cries. Poor guy. I guess he really enjoys going out with us. He truly is a sympathy and therapy cat.

After his nap I'm going to have Wash take a look at some Urn-makers and try to catch up on the wonderful offers that have come in from the CF4L crowd. I wish I had more energy to answer everything in the proper timely fashion. I do what I can, and Wash gets first.

My own heath problems are not really resolving yet. My meds will take about 2 weeks to really start to work and maybe repair some damage. I'm not certain if I'd be better off now if I still had my gallbladder, or if it just would have melted in me regardless. I'm in a lot of pain daily, but I'm trying to listen to my doctor about foods /diet and give the meds the time to work.

Laundry today. At some point. I've also averaged less than 4 hours of sleep for the last three nights and no nap longer than 20 mins uninterrupted. I'd like a nap, but I can't sleep unless Wash is, or someone else is around to watch him. I will be happy come April when he can be approved for some home aides to help give me some respite.

Cat cuddles, a good movie or two, and some chocolate with mint tea made from my garden are on my list today.

Tuesday, March 27, 2012


There's something I was supposed to be doing today, but with Wash where he is... there is not a safe way for me to take him, or leave him alone with no sitter.
I'm scared of the consequences, but I am literally option-less in this case.

Sunday was better. Our friend Andy ended up coming and staying Sat night with us, which honestly even made *me* sleep better. I just felt I could relax a bit more knowing there was someone else in the house if Wash got up to trouble, or sleepwalking or some such. Thankfully for us all, he did not. Slept through the night just fine.

I made the boys breakfast on Sunday and after Andy left, one of the Hospice Volunteers came over for a few afternoon hours with Wash. They played some games or watched a movie, I can't even recall. We had SR come by after the HV left and my (step)dad came to take me out of the house for about an hour, to do an errand and just breathe. I needed it. I have not had but about one chance for a 10 min cry so since this whole thing started. And it's some emotionally heavy shit. Wash hates seeing me cry though, he can't understand anymore and just sees me in pain, and usually draws the conclusion he caused the hurt. So he feels bad too! Horrid cycle! So, I try not to cry around him.

We had enough time in the evening for a nap for him and a shower for me, then we gussied ourselves up for our Mad Men ses 5 party. Which rocked. I cannot wait to complete my new BINGO charts for next week.

Unfortunately, this means I cannot 'bother' him about the Urn right now. He needs a little time away from his thoughts this weekend and the idea of his own end.
It's hard to keep him distracted, try to keep him cheered and happy, to convince him to just keep living. It's selfish, I'm personally not ready for him to die. I have to hope at some point I will be, I'll be able to make peace with it, but not right now. Now, he still has life left in him, just sadly some very bad days too.

Monday we had the Hospice parade through, nurses, social workers, our Chaplain. Poor Wash! I think he was much more tired than he let on, or else his steroids might be bothering him. He's still asleep this morning, 35 minutes so far that I've been able to write and work on my own. I'll have to check him soon, make sure he's breathing ok.

I have so many fears, so many anxieties. I worry for my own future, is it coming at the price of his? Am I hurting myself very very badly over long term for staying, for putting his needs first, for being public?
I get so scared.

I need to hear good news today, or else have a lack of bad news. My husband is 27 years old and dying. I'm his only caregiver, and fulltime to boot. I have to do what is right and best for him, and I will have to face my own consequences.
I wish it did not have to be this complicated or painful. Being an "Adult" is not easy.

Saturday, March 24, 2012


And THERE is it. 2 plus hours into a not-fun-at-all talk this morning, continuing from last night, and Wash has said it out loud, again.
"Because I need to DO SOMETHING, MAKE SOMETHING of value, or why else stay alive? I'm worthless just existing."

He truly feels, believes, and was told from a young age on, if he cannot be "productive" in society, he should just die. [Why yes, he did read a lot of Ayn Rand]

He's already spoken to Hospice about this before, and his Chaplain and Social Worker, and Therapist have all said that is not true, but he really fucking believes that if he cannot work and get a paycheque, he should just fucking die already.

I told him earlier the least he could do today was to be honest to himself and us around him.

He's been so verbally abusive today.

Brain cancer can suck on Sideshow Boob.


So we had some nurses come over this afternoon and talk to Wash, and he spoke very honestly about his suicidal thoughts and wishes, but was able to say he would be "safe" for the next day and not an immediate danger to himself.
The nurses adjusted his meds, and had a social worker come over after they left; she talked for about an hour with him. She was able to figure out he was triggered into this most recent cycle when he was on the computer last night and saw a little side-ad for architecture college degrees.
So, we talked of a few ways to help when he was triggered, and how to distract him from the self-harming or suicidal thoughts.

Our friend N. is coming over to take him to a burger place for dinner, and my brother is coming over the evening to help me watch and distract him. I still want someone to sleep over with us tonight though, and someone in the morning.

Hospice rocks, cancer sucks, and this is emotionally draining. Also, my intestines hurt again.


Wash has said he is ok with me posting these portions of my more private entries from the last day.

He wants people to see what it is like.

He wants others to know what happens, physically and mentally.

Even in his most trying times, he wants to be an example, and it breaks my heart he cannot see what an effect he has had.

Thursday, March 22, 2012

When there's someone by your side to sing along

I have not been feeling my best lately and putting off taking care of myself. People I value have pointed out just how stupid that is, as well as avoiding the doctor, so I sucked up my issues and called.
I'm hoping to get some answers and some help.

Some short, but good bits today.

Tuesday sadly Shepherd's pie was cancelled as there was a bug going around my stepdad was not feeling great. So, my mum came over to our place instead, we grabbed Tacos for Tuesday dinner and the three of us enjoyed watching "The Muppets". My mum started out hushing at me but by the end was singing all the songs out loud with Wash and me. It was a really sweet and happy night and memories for all of us, I feel.
A little later on just after we had finished the second episode of "Texas Ranch House" the power for our entire block went out. I'm still trying to figure out if that is ironic. I just grabbed some candles, Wash went to sleep with a few extra blankets, and I stayed up and read for a couple hours until the power reset. Then I turned in.

Wednesday I really was not feeling that great myself, and Wash really just needed to *write*, so he just took the computer over for the day. He finished his short story a while ago and has been doing his best to get some help to really edit it and make it into a nice product. I'm proud of his hard work and how he has been able to re-focus his grief of losing his ability to be an architect, into something else; writing fantasy/fiction and illustrating. Some days he can work for a few hours with great focus, but most of the time his projects lay undisturbed until I remind him or something happens to inspire his creativity. Brain cancer and injuries are so odd; certain predictabilities, and other flat out deficiencies. He cannot remember to brush his teeth, or even eat on a daily basis, but he can still write a 20 page short story. I am constantly amazed by how much of "him" remains, and how much of his personality and even skills have just gone away.
We also had some good insurance news this week; our old horrible case-manager for Wash is off, and our new one is a very respectable woman. Wash had a 2 hour assessment that left him very drained, but we have a few new things to help him now; a new cane he got today and he will have an appointment soon to check his eyes and see if glasses can help him. We're not sure how bad is sight is due to the tumor pressing his optic nerve and/or the brain surgeries, and how much glasses can really help; but I think that if his sight is improved, even if for seeing or just reading it will help. Everything right now I can do to help him still *feel* independent, even if he is not, it helps his Quality of Life. I don't like thinking we are at the point of just audio-books for him, so I hope maybe, just maybe, reading glasses might help him do it himself.

So, my paperwork says that as of April 2012 Wash will be on ALTCS totally and in full effect, and at that point (the social worker explained this from my paperwork) we will STOP having to pay the additional $125.15 and $98.00 Medicare/Medicaid premiums a month. Which I've been having to do out of pocket for about a year or so now. It will be really nice when I can stop being "past due" on all my bills.

Today I am trying to play catch up as best I can, while keeping my eye on him, and feeling gorram awful. I see my doctor this afternoon, and I'm hoping even if there is no pill for my stress levels, she can help with some ideas/referrals, or diet.

In the evening we went over to my mum's house and spent the evening with my older brothers; one who lives around here showed up even though he WAS sick with a cold (he wore a mask the whole night) and my older brother Yoshi had flown in for a night to fly a charter Cactus League team to Japan the next day. We got to share photos, stories, and some laughs. I heard all about my lovely nephew and his adventures (he went "skiing"/sledding for the first time in Feb! He made a life sized 3 foot tall snowman too.) shared some of what was going on with us, and just had a nice night with *my* family around the table. It was wonderful on so many many levels.
Having him live so far away makes things hard, but I'm glad for the technology that allows my mother to speak and teach English to her grandson in Japan, and allows us to share so much so fast. Wash even remembered the last time he had been in town, which was back when he was still getting chemo I think!

I can't think of what else has really been going on, but I've been forgetting things all week.

Tuesday, March 20, 2012

Fluffy Days

So much to do today, I don't have much time for an update.

Someone from the long-term care side of Wash's main insurance; AHCCCS is coming over today for another medical evaluation. Sadly our social worker can't come til tomorrow to explain things, but I am just going to write down every question that I have today with the new 'case manager'. I got some paperwork from ALTCS a day ago (finally!) but it is 9 pages of financial reports that I just do not comprehend. I cannot tell if we were approved or denied again! At least they were correct with our reported income; $26.00 in the bank. Hopefully the Social Worker will shed some light on the papers tomorrow.

Wash had an interesting day yesterday; He woke up very confused, was not certain really what day it was or the things he needed to do, even after looking at the schedule on the board I put up for him. He was just getting so mixed up and a little scared. I called our Hospice nurse, who spoke to him for a few minutes. Since he was not aggravated with his confusion this time, she asked us to check in again in a few hours, see how he was then. He was not angry at all, just a sad and confused.
My mum came over in the afternoon to help us on a couple errands, and Wash was feeling a bit better when we went out at first, but he was tired and dropping by the time we were done with the first thing. Poor guy. I had him sit down in a chair but he was still just so tired. I think I should have just put him in his wheelchair yesterday for going out.
We took him home and put him to bed while I went out to finish my errands as he slept.
He had a 2 hour plus nap and was a bit more lively when he woke, and a lot less confused at that point. I called the Hospice Nurse back, she spoke to Wash again and seemed to agree that resting did a good job of helping to "clear" his brain.

It was a busy day on top of taking care of him.

I'm doing my best to catch up on emails and such, I ask a little patience.
So, we have the entire afternoon blocked off for Wash's medical stuff and then recovery time for him, and then it's the last Shepard's Pie Tuesday for the "winter" so I am looking personally to my [step]dad's cooking tonight. He makes some wonderful vegetarian meals for me, and I love so much that he does it with love for me.

AND THEN comes Wednesday and my happiest hopeful moment of the week; my older brother is coming in from Japan! He's only in town for one night, as he was hired to fly some folks in for a Spring Training game and fly out tomorrow, but I am so excited to see my brother! He's about 12 years older than me, so we are not *super* close, but he is my older brother, and I love him like I love every one of my siblings. {Step or bio}

I want to also take even a minute and just write out a thank you to every single one of you. Everyone that has stopped by and read my words, or heard Wash's wish, or spread our story, or felt moved to help in some way, thank you. It is every single one of you who gives me Hope for us as humans, who give me Hope that we as humans can in fact come together.

I will be hoping for a good day for us, a good day for Wash, and I honestly hope that every one of you, Dear Readers has something good in your day too.

I hope you know that you are loved, and thanked, and appreciated just as much as Wash and I feel today from all of you.

Saturday, March 17, 2012

As befits a TimeLord

I suppose I should be more shocked at the response we've gotten in the last few days. Geeks and lovers of specific shows bond hard it seems.

I'll get to some questions in a moment.

Wash has been holding steady the past few days. Physically he has been a bit more run down for some reason, we were not even going out on a walk to the mailbox together, he's just been physically tired lately. I did get him and Leto outside to watch me garden the other day, but he was too tired to even read out loud then, just watch and look at the green oasis I have made in the back.
I did later last night get him out for a small walk around the block. His first real physical activity in about 3 days. He crashed out before midnight and is still in bed now, trying to disappear under the covers.

Mentally he has been fairly present and even this week, though again, I've noticed him not reading words as much- he's switched over from some short novels to a comic series now. I notice these things, but I'm not really sure how aware he is of them. This is the unpredictable portion of the predictable cycle of brain cancer.

And speaking of, to every single one of you who has read our story, shared our story, or donated in some way; thank you. I literally could not give him the highest quality of life *I* can without all of you.

As to the TARDIS; we actually DO have a TARDIS cookie jar! I got one for Wash for giftmas back in Dec of 2010. We tend to keep Jammie Dodgers in it and it frequently is moved about downstairs. Wash does not want the plastic, or the memories we have of the cookie jar fucking me up after he's gone.
We have received about a dozen offers so far from folks willing to do a ceramic urn for Wash; he is trying to look through portfolios and decide which idea he likes the best. It is his decision, and I will do my best to thank every offer we have received personally- a small thank you for all the wonderful woodworkers who have reached out as well.

We are in touch with April from Regretsy to choose the final urn, and Wash again thanks every single artist who has offered to help give him his wish of a resting place.

It can be overwhelming sometimes to be this young and thrown into a situation like this, and I would not have made it this far and long were it not for the oftentimes unconventional support.

Wash and I are Browncoats too, and I think he has really seen just how many people he has around to carry him when he can't even crawl.


Wash also says if anyone wants to or can get in touch with The Grand Moff [Stephen Moffat] or Nathan Fillion he would be happy to get some kind of dying-geek shout-out from his idols.

[Thank you to R. for the most excellent photoshop on the pic. I frakkin' LOVE it. Someone tell Wil Wheaton we're saving Wash now, not Ferris]

Wednesday, March 14, 2012


My husband,

I love you.

Happy 3 years of living our vows, every day.

We've gone through the shit, and we have had a few glorious moments which I can hope I will never forget.

We have had our days and even short weeks of triumph and an even more precious bond.

You still make me laugh. You still teach me things, every day.

You introduced me into a world of new adventures, new images. You taught me what "Steampunk" was (and was NOT), and you welded me a throne- "For my Queen" you said. I still have it, and will as long as I live.

You crafted me matching Steampunk Goggles to your own; but with all the details for me.

The "something blue" from our wedding is kept inside the Codex you made.

You introduced me to the 9th Doctor, and in turn I showed you the 8th, and who *my* Doctor was growing up. We enjoyed laughing at the humour of Tom Baker together.

After our first real and proper date you had my heart when you said you would be happy to just to watch "Serenity" with me- no pressure for anything more than sharing a love of Joss. We did.

You showed me what the Firefly RPG was. I showed you my film collection and musicals; you had me laughing my pants off at your Jeeves & Wooster collection.

You introduced me to so many mediums of Science-Fiction I did not know existed. We bonded over shared hobbies, and you introduced me to some shows and writers I aspire to be like. You introduced me to strong creative women like Jane Espenson, Marti Noxon, and Cherie Priest.
I introduced you to my favourite female authors like Syne Mitchell and Laurie R King.

You were fine and happy that we proposed to each other.

You loved having a bride who wore a Red, not White, dress.

You wore a kilt for me.

We had two days of Honeymoon looking at Steam Trains. My heart was so big to see how happy you were around those engines and steel and steam.

You worked for me, while you could. You wrote for me.

We shared books, and stories.

You had me read "Watchmen"; and we both took a love story from that. Never knowing then how true it would really be.

You respected how having Aspergers' makes me- different. My "death shadow" never scared you. You were interested in learning about what I was in school for. You were not scared that I was around dead humans. You were proud of the work I did. You told me often.

You made me feel that even though it was often confusing, I could in fact, love that deeply.
You helped me to understand my feelings, understand what the stimulus was. Understand the motivation that falls in line with what we consider to be "unconditional love".

You built me a garden. Twice.

You took me to 'Cons. You gave me the chance to meet some of my favourite actors and idols.

You spent years bonding with my cat, even when she was not nice at all.

You care. My Wash, you care.
You have always been supportive of who I am, what I love, and what I care about.

You give me the motivation and inspiration to always be better, to be patient, to be kind, to be loving.

You are the person I want to touch as I fall asleep every night. You are the person I want to speak my last words to every night, "I love you".

You push me to keep living, every day.

Even in the bad times, you are still my best friend.

I will take happily every day I am allowed to wake up next to you, my love. For however long we get.

Happy 3rd Wedding Anniversary.

Whatever I do for you, I can hope it is a reflection of the love you have given to me.

Thank you for these 3 years of being my husband.
Thank you for being my Wash.
I love you.

Tuesday, March 13, 2012

Civic Duties

Not a Bus Strike or brain cancer can keep Wash and myself from our Civic duty to VOTE.

If I don't participate in the Electoral process, how can I even think to voice outrage or support?

In other news, I have awesome friends. Some girl friends got together to get me a nice tea brewing set inside the mug (with lid!) AND- they got me motherfrakking compostable tea for it! This is how I know they know and love me; not only the tea, but they know I love gardening and got me tea that would serve me well after I drank it. I am in love with my MFCoAW.

Also, some friends of ours (Roseanna, Hi!) sent us the coolest gift set; soaps from the oldest apathocary shop in the US! Wash got a set of soaps that former Presidents used! (scent wise, not a old used bar.) So, he can now smell like Washington, Ike, or Kennedy! I am fascinated by the history of it, and the scents are really nice too! Wash is adoring the idea that he smells like a former President.

We are both excited for tomorrow. 3 years married. Considering everything we have overcome together, I think it is amazing. Some days I feel like we have packed 3 decades into 3 years, then again, we have to.

Wash is getting some help in the afternoon to make dinner for us. I'm still hoping for some cool things in the mail for him, and still hoping on the off chance he will get a "Firefly" type congrats. A big part of why he has fought against this cancer (that he really can't "beat") has been for me. Much like everything that I do for him, for his smile, for a memory he can remember; he has fought to stay alive in part, for me.
He sees something so special and good in me, he has fought death to stay by my side this long.
I think that is a pretty special gift for any day, let alone our anniversary.

I'm a very lucky person, even on the bad days. I have still had 4 years together, 3 years married with the love of my life. With the other half of my soul. The person who resonates so deep within me that I will go through hell and back to have him even for one more day.

Frak cancer.
Frak brain cancer.
Frak tumors.
Frak chemo side effects.
Frak doctors who don't think he is worth "saving".
Frak insurance companies that think he is too expensive to keep alive.
Frak the drama.
Frak the bad nights and bad mornings.
Frak the tears.

For 3 years I have had the honor to be married to the person I love more than myself.
For 4 years I have known the man who changed me, and believes in me, and loves me.

It is bittersweet, but I am happy and thankful for every memory- happy or painful.

Happy almost Pi day, indeed.

Sunday, March 11, 2012

Speak Friend and Enter

Wash said this about his gift from me on Saturday night;

"My wife's 'Leslie Knope' anniversary gift to me: A steakhouse dinner with friends and then an awesome adventure movie after. My inner Ron Swanson smiles."

I'm happy my husband is pleased. Yay!
I enjoyed highly my own little bridal/anniversary party.

Details and photos to come.

I think waking up today, feeling happy and loved, is something to celebrate.

Friday, March 9, 2012

Dancing Through Life

I still need like, 6 more hours of sleep.
We were 6 rows back, dead centre.

I could see the mikes on the actors. We could see everything on the set. We were not hearing any mics or speakers, that close all we heard was their voices.

There is no one word to describe how excellent and memorable that show was for us. How many great memories we will now have.
Wash says he is happy to cross this from his "bucket list".

Good shot, Wash. He asked the Hospice folks to help him do this for us/for our anniversary and it was incredible.

I think hearing "Defying Gravity" live will be one of my happiest memories of my life. True, hearing Mandy sing in "Les Mis" when I was little was GREAT, but.... Elphaba holds a most special place in my heart.

I feel like floating on happiness today.
Memorable and Magical.

Wash- you did good. [Not that you will be reading this til after our anniversary like you promised!]

It's 1:33pm and he wants some dinner now.
Pics tomorrow.

Beyond amazing.

Thursday, March 8, 2012

Flying High

Hospice is so awesome.

Wash asked our SW for some help to do something nice for *me* for our anniversary.

They got us tickets to Wicked! tonight.

With Idina.

That means I not only get to see theatre, which I LOVE, but I get to hear/see the actress whom I fell in love with on the original cast recording back in 2001 or so.
I read the book in 7th grade.

To say I am mmm, excited, about tonight would be quite the understatement.

Apparently some friends of mine are also throwing me a (belated) Bridal Shower/Party this weekend- see as we eloped in secret, I never got one. We were engaged, but we never had any public recognition of our marriage until Wash was sick; and then of course, the focus was on his health, not "us" as a married couple now.

I am hopeful and trying to really be happy and enjoy this. I cannot allow myself to remember the other half of this right now- I'm going all out because I am really not certain if my husband will be alive for our 4th anniversary next year.

Wash also got to have a nice little Skype chat last night. One of our very close and good friends is still taking orders from Uncle Sam through Nov or so this year- we rarely get to see him, but I wanted him to know and I wanted to make sure Wash got to talk to his friend before he left, and while he still knew who he was speaking to. They caught up for about a half hour last night, and there were plenty of laughs and some good news shared.

I should have an ALTCS update tomorrow, hopefully.

Now, since Wash got his awesome gift for me all set; who wants to help with the other parts of my gift to him? I want for Wash- something personalized from Nathan Fillion. It can be a book or a napkin, or a phone call. I just want Wash to know (even for a few seconds) that Nathan knows who he is, what he is fighting (a losing battle), and that he (Nathan) symbolizes Wash's hero; the Browncoat who *never* gives up.

My Wash IS a Browncoat. Has been since the day I met him.

Monday, March 5, 2012

Eye of the Hurricane

I had a Migraine appear yesterday. This was about my 5th ever- I started getting them a few years ago when I turned 19. "Painful" and "Horrible" are very light words for this.

It was as intense as my gallbladder melting. It felt like Athena trying to hack her way out of my head.

So, Wash spent almost 4 hours playing with his Hospice Volunteer yesterday and we had Andy* and another girl-friend of mine come over for Walking Dead BINGO.

I'm going to try to write about Sunday morning in a bit. It was a hard few hours; Wash did not know what day it was and was so aggressive to me when I tried to tell him that it was Sunday, not Saturday. He remembered what happened but just could not put the TIME together with the ACTION. It was a real hard startling chance for me to see how his brain cancer, GBM, really effects him.
It was painful for me, in more than just his yelling or his nasty Not-Wash words.
I hate seeing him that confused. That hurt. That scared.

Sunday, March 4, 2012


So I had asked Wash to do ONE thing Saturday (make a call to an automated number to find something out) and he (should have known) did not do it. I reminded him first thing when he woke today about it and he FLIPPED THE FUCK OUT on me. He thought today was Saturday and I was messing with him. He remembers "yesterday" but has no association anymore with "when" things are; the days are now a concept to him it seems; even having calendars around doesn't help much.
I talked rationally to him for a bit, but I'm really not sure how much he understands or how much he really comprehends right now.
I cried for a min in my bedroom. He is not the same, he is not "himself". The man I love comes and goes, and most of the time a very selfish and shell of a person is left for me to just literally take care of. I am and sad and miss my husband.

Some mornings are just shit.

Thursday, March 1, 2012

Congratulations, Mr P-K, it's a Sprain!

We need every bit of good news we can get today. I'll have a longer post later.
Thankfully, nurse says a bad sprain, but he will be fine if he stays off it for a few days and takes it easy for a few weeks. Considering we already have a wheelchair, I think we'll be juuuuust fine.

So close

Here's to hoping it's not broken!

Wash tripped/ lost his balance and knocked his foot against one of our floor fans.
He did not think it was hurt too bad when he went to bed last night, but this morning it is purple and very very swollen and so far even with meds, still painful.
I called Hospice and am following their nurses' advice for him, but depending on the next few hours, he might have to go down to the ER for an X-Ray to confirm if it is or is not broken.

God-damned Cancer.

It would be a very small thing to a healthy person, but ultimately, Wash is not "healthy". So, we will wait, be in contact with Hospice, and just hope very hard he sprained it not broke bones.