Freckles

Wash is tucked away, with his blankets and little stuffed dog and Hoban the Bear. His pain spiked up very suddenly this evening but we managed to get it back under control and down to where he can relax, not spasm and sleep.

Lately he's been sleeping nights anywhere from 13-16 hours. The good news is the pain medications seem to be working, as for the first time in three years, he says his active neuropathy pain is going down. He's overall happier when he is in less pain. Though at this point, that is mostly the physical pain that is being addressed. The emotional pain from facing mortality at his young age with his already traumatized brain ... it can certainly make things harder some days.

I have been trying very hard in the last few days to really be calmer around him and just agree, even if he is making no real sense. My Wash would have wanted me to have passion still, to disagree and debate. But, right now, living it, I'm told left and right "Don't argue. Don't fight him anymore." Wash would not have wanted that. I'm not really certain what I want, and what is easier; or if they are now the same thing.

We have a good friend and his mum coming in this week from SoCal to help take care of things around here for a few days; to help watch Wash, give me some rest. To help me clean the house, take care of things I cannot with a broken foot. To let me get off my foot. To give us support; since Wash knows and really likes this friend too.

I want to be clear that it is not a case of our local support system being a "total failure". That is not true at all.

The issues are that our local support is 99% people in their 20s. Who are all just starting their own careers. We had 4/5 of our local support who lives in the same city as us move in a 5 week period. This also happened to be around the start of my foot issues. A correlation of unfortunate timing.

Our local support works, they have to, and are lucky enough to have jobs. I also really want to emphasize that they are our age; dealing with serious issues this young is a challenge in general, to have handled everything that has happened to their friends (us) over the last few years must be terribly trying for them as well; I'm honestly surprised we have not lost even more friends; like the couple I knew for more than a decade, helped keep together during times of relationship crisis, and then when Wash was ill and they were getting married... both of us fell off the map. It ended so badly. I'm still hurt two years on.

So, I am thankful for those who have stuck around and been there, steadfast. I'm thankful for our friends who show up weekly and give Wash a sense of stability and love. I am.

At the same time I recognize that our local group is quite small, and quite limited by age and work. This has caused issues. The conflagration continued with the saga of the Awful Social Worker (ASW) who we have not spoken to or heard from in two weeks, since he stopped by and Wash had to give him the "It's not you, it's me" speech to get him to leave. This has effectively left us without a Social Worker.

Wash's insurance covers 22 hours per week of caregiving (that is not me). That works out to 3 hours 6 days, 4 hours 1 day of the 7 day week. That also leaves 20-21 hours out of every day I am alone here as the sole caregiver for Wash, who needs EVER so much more help these days with everything. This means that for the last three weeks, though I have been wearing Das Boot I have not been able to keep off my feet as completely as my doctor requested of me when the break first happened.

Which leads up to this week, when help arrives, and today, when I had my first set of follow up X-Rays.

There was some expected news and some good news, tempered with some mild hope.

My foot has not healed. In fact, it is still quite weak and broken.

However, my doctor also knows me, and he knows Wash (the office took care of Wash as his Internal Primary Physician) and he knows our situation. After I explained that I was being as medically compliant as I could, without putting my husband in danger, he decided that giving me 3 more weeks in the Boot to try to heal more would be ok. He also gave me a note to pass along to Wash's insurance in the hopes that with some medical backing and paperwork the insurance company will allow for more Aide hours to caregive for Wash while I stay off my foot and let it heal naturally. Or else my insurance (which is the same as Wash's; AHCCCS, the State Run Group) will eventually pay thousands for my orthopaedic consult, hospital stay, surgery, casts, and physical re-hab. Giving me a full day caregiver for 3-4 weeks seems ever so much more fiscally practical, let alone humane.

I don't trust at all my Insurance to make a humane decision though.

Ah, I'm tired.

So many of my close friends are going through some losses of their own right now. I ache that I cannot be there more for them.

I'm also so thankful for my extended friend family, and the Geek/Browncoat Army which has rallied to help raise funds for my friend to come help us and take care of me and Wash, and help me take care of Wash as we move towards what I think is the end.

He is in more pain each day, but so far thankfully each day we have been able to keep it under control and not to an unbearable point. He also has some new worrying swelling in his face/head and some specific pains that make me wonder if he has another brain tumor and perhaps where it is working it's way around in his brain.

He's not playing with LEGO sets too much right now. He got a couple LEGO books and I think is reading them and trying to get an idea to do a project with a mix from his sets. I hope. I hope he is still enjoying them, even on some level. He enjoys less things over time too.

Burgers he still loves, though, and watching Dr Who with our friends. Warehouse 13 on Monday nights, where he still claps at Jane Espenson's name on the credits. Every.Time. Every. Week.

He plays games, like "walk the plank" and some other Pirate themed stuff. His Aides are wonderful and take care of him, clean after him, and play with him when he is awake and has energy for it.

There's a few other things, but I'm quite tired and past the point I might have been trying to make with this post.

Cheers for people who love and support others, be it by phone call from across the country, or bringing over a set of burritos for a terminal guy to eat, or friends buying groceries to be delivered since my broken foot in Boot makes driving impossible. Postcards. Texts saying "I'm thinking of you." So many ways to show how much care, compassion, and friendship exists.

We are rich in friends all over the world, even if our local group is numerically small.

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]

Maccababy Miracle

I still have my old VHS tape of the Rugrats 'Channukah' special. I used to watch it EVERY year as a kid, sharing with as many friends as I had at the time.

As I got older, I never really "grew out" of watching it, even as I learned more and more about the actual history and stories of Hannukah.

I have played it for Wash a few times and he seemed to enjoy it, though not the process of actually hooking up the VCR to play it.

This year, I checked online first. Lo and behold the Maccababy Miracle, it's finally on Netflix Instant View. So, we're watching my old special looking great on Wash's tv (his nice one from his bachelor days).

I think we are both trying to make today a "good" day.

There was a lot of stress yesterday, on me, and from Wash.

He was not having a good brain day. I know he was mostly "there", but he got so angry, and said such .... horrible things to me. It was disturbing on so many levels just how deep his words could cut. I still wonder; does he say the things purely as a result of the brain cancer and surgeries, or is it because he knows me so well. His words, hurtful and nasty as they are, for me I wonder just how much truth they hold.

I wonder if he remembers or doesn't sleep as well after telling me I'm less than human. After telling me I'm such a freak I could not belong to any culture on the globe. There's more too, but I personally just want to forget the meaner shit he said.

I've mentioned here before that we both (before we even got married) agreed that our relationship would be the type where we work our shit out and we would not go to bed angry with each other.

For me, it is in some ways harder to do this since we found out about the cancer, and from a perspective easier. I know, I KNOW I have to forgive and at least let my anger go before bed. Easy to say, not always easy in action. Perspective though, tells me that doing it, even if it is so hard to work past the pain of the words or actions, doing it takes some of the pain and some of the stress off of me. If he dies in the night, or if I do, we end on the note and re-affirm that we do still love each other.

I worry always. There is always a chance something will happen in his brain and he just won't wake up as the same person. Every day holds that as an option.

It is hard, so hard to let go of the anger, and work on my own hurt/sad feelings.

I have not gotten anything for Wash yet for Hannukah or Christmas. He went out and "got" me a new small tool to replace my old one, so .... it will be interesting with the "presents" this year.

My present is that he is still alive. My present is that most days he remembers that I'm his wife and his nurse. My present is a good day means he can still talk a walk with me. My present is he still laughs, and he still -sometimes- can have discussions with me.

How am I supposed to ask for more?