Into the Open Air

Wash had a good Sunday; saw his friends N & T, watched "Blink", ate well.

He informed me around midnight he felt he was going to pass shortly.

He asked me to put on the finale of last seasons' Dr Who; The Wedding of River Song.

He fell into unconsciousness before the end of the episode, around 3am.

His last moments aware were of being loved, seeing a show that made him so HAPPY, and knowing he was going to be going off on his own adventures soon in his own TARDIS.

He is in a Hospice Home now where he can have the best quality End of Life.

Thank you all for your thoughts, prayers, wishes, hopes, messages, support, and love.

We could not have made it this far without all our friends acting as Browncoats to carry us through these trials.

My Wash's next adventure will start soon.

Short Takes VII

He's been sleeping most of the day.

He'll wake up for a couple of minutes, then go back to sleep.

I'm letting him just rest.

He's under the blanket his Aunt made for him.

So far, today is much more calm. No Police, no Crisis Response Team today. No Hospice check.

Just his Aide and me.

I am thankful beyond words for my friends.

Pic is of Wash standing in his TARDIS (bathrobe) before his shower the other day. The swelling from the steroids is pretty intense, but he is smiling.

[Robe courtesy of www.thinkgeek.com Thank you Geeks! ]

I had a terrible day. But, it passed. Today is new.

I am doing my best. Honestly, I am.

Eye of the Storm

Wash had some severe pain this morning.

Literally screaming, waking me up.

Hospice had his nurse talk to us and he got pain meds. They did help. He had almost a full breakfast and a snack.

The nurse checked in again this afternoon. It could be a side effect of one of his meds, but perhaps not likely as nothing has changed in about 2 weeks.

He had more pain medication in the afternoon when he started feeling the stabbing in his joints again.

He's been asleep now for about 2 hours. He said he was feeling (after meds) "I don't hurt, I feel warm and fluffy."

Aephie is catloafed at Wash's feet on the bed. She and Leto have been taking turns today guarding him.

I'm going to try and get a short nap in today. I have a horrid feeling I might not get much sleep tonight.

He had to put the LEGO building on hold for a little while, moving for him hurt too much.

Hospice is being great right now.

I am very, very tired.

64 minutes

That's how much time I have right now to process everything, cry, think, deal, cope- before Wash wakes up from his nap and needs me to help him move.

Wash did not have a good start to his day. He fell a few times (thankfully onto the bed) when he first woke because he forgot he has trouble standing/walking now.

He was angry. He was confused.

He was a stranger needing help and ready to fight if anyone tried to give him (help).

I called the Hospice nurses and got him some meds to help him calm down. The Nurses wanted to send one out to check on him, and our (awful, new) Social Worker as well.

My mum came in the late morning to help me watch him. By then, he had mostly calmed down and was back to playing LEGOS. That seems to be one of the only things these days he enjoys, building his little LEGO worlds. [a friend sent some Star Wars LEGO sets last week he's been working on]

We had P. our afternoon aide come at one and the nurse was here at 2:30. The (awful) social worker was late.

We spoke like we did literally yesterday about his falls, about his short term memory issues, about my concerns for safety, and his concerns for lack of control....

The talks did not really resolve anything, but I have a lot on my plate to think about and figure out.

Bottom line, he's not safe upstairs anymore. So, I need to figure out how much space I need to make, find a mini-storage place, pack/move/box things up, get them moved, get the downstairs "safe" from sharp corners or things he could pull down if he fell, and figure out if I will be sleeping with him in a bed downstairs- if so WHERE- or do we need to keep space for the couch AND a little standard single bed? How much can I move before his brain freaks out at the changes? How much can I move before MY brain just cries and breaks down at the changes? The Aspie part of me has been (in my brain) hiding and crying in a closet for two days now. That part of me is unquestionably despondent at change.

Then, this all has to happen when Wash is somewhere safe; so do we try and get respite care hospice stay for him again, or does he present more of an "acute" need and thus can go right in to a hospice home for a while so they can get his morning stable and figure out how to best help him move around without posing a risk to break bones?

I won't even hear back about the possibility of a respite stay until Monday.

I feel like I have no time. Like this is all happening now far far too fast. Even beyond my control, my ability to keep safe.

I can't cry in front of him. I can't mourn. And I cannot get my head to actually make a godsdamned decision while he is here, while I have to watch him, to nurse him, to be strong.

Not to mention my asthma, which this week has been kind enough to flare up for me (smog and stress, my foes) so even if I have an hour while he sleeps, when I try to let some of this -emotional blockage- out, I just end up crying a few sobs, and then gasping for air as an asthma attack hits.

I am quite thankful for my mother. For her being there for me, for us, today. For the hug. I don't get hugs from Wash anymore, kisses really either. I think that part of his brain, himself, that could, that wanted to give ME comfort, I think it's gone.

I'm out of words. My brain just locks up. Rationally, I know what is coming down the line, I know the process, I know the stages, I know the signs.

But, as much as I try and strive, I'm not a fully rational creature. I have emotions.

I have memories.

The pain is overwhelming. I do not want to imagine how much worse it will get, how much more I will have to deal with at the very end.

The tunnel seems much much shorter now though.

It's not a light, it's not something peaceful, beckoning, calming.

The tunnel is ending and I can hear the train coming at me.

I should probably also eat something today. Nothing appeals to me.

No more good/bad days. Now we have good and bad hours in each day.

I hate myself in the few moments when I wish it was over. Because I'm not ready. I'm not ready.

Not even Joss, Jane, and Marti can stop the tears today.

'Where do we go from here?'

He can't run, he can't walk, he's getting ready to stop crawling. I wish there was a cure, an answer to pick up my Browncoat and carry him.

The in-between

All things staying the same, Wash will go into a Hospice Respite home/facility Fri (tomorrow) morning through Monday afternoon, planned.

I am too numb, scared, tired, relieved, and nervous to process more than that.

My mother and I toured the facility today, it was very nice and should meet his needs, if not all his desires.

I have a list, but I cannot pack his things yet. I'm not ready. A few more hours won't matter.

Rationally, I know this is the right thing to do for us both, however much it emotionally hurts to be away.

The Note

Family and Friends,

It's been a little bit since the last real update on Kevin past his entering into Home Hospice Care this January.

It's been a rough few months with many new challenges, but also quite a few wonderful moments, new memories for us both, and a wonderful outpouring of "geek" support for my beloved Browncoat.

Kevin is having a lot more issues right now, which is the nature and course of his disease. Before he went into Hospice service this year he had made it well known he was not interested in more chemotherapy when his brain tumor(s) came back; he wanted the best and happiest quality of life he could have for as long as he could have it. I have done my best to honour his wishes and with some wonderful support from around the world, I have been able to keep him at home and mostly comfortable. He does not consider this to be "giving up" or "not fighting"; he is working with his grief towards acceptance of the end course of his disease. Please know that the intent of this message is only to give you the opportunity to get some closure both for Kevin and for yourself. To give you the knowledge and awareness that despite our best efforts, an immense amount of prayers and well wishes, the love and support of our family and friends, and the best advances that medical science has to offer, he is not going to get "better".

We are losing Kevin, day by day, and the course is set and tragically unchangeable. I would have you know that, and have the choice about how you would like to handle saying your goodbyes. We also want to pass along that the window for saying your goodbyes is starting to close more quickly now so if you wish to visit or call or write, you should immediately start making those plans. Since stimulation has a direct line to his exhaustion and fatigue please take directly to me if you are out of State and would like a longer visit (over a period of a few days).

I am asking those who are local to try if you can to come for a day/evening visit or even a phone/Skype call. He is still able to enjoy things, and his personality still shines through on most days; but he is having more days where he does lose "himself". This is common with brain injuries/cancer. He may recall you and every detail from the last time you were together, but also be aware he may not really recognize you or how much time has passed between events. If he is not upset over this, or seems to be in a time period from when he was younger, that again is just part of his disease. For now we suggest day/evening visits be kept to 1 hour or less, unless details have been discussed with me prior. Some days he may like to go out for burgers, or to see a movie - and he has a wheelchair if he needs it on those days, and others he may just enjoy a short game or talk at home.

I will do my best to address any questions you might have.We both thank everyone for the continued kind thoughts, wishes, and prayers.

Tashi Pratt-King

Please visit www.savewash.com for more information on Kevin and Glioblastoma Multiforme brain cancer.

Looking for Bat Country

It's been a hard week of truths for me.

I've had some good long talks with Hospice, and some friends who have literally been in a similar situation with brain cancer.

I've been holding myself trying not to fall into a depression. Trying not to lose the functionality I still currently have. I feel so tired, so much of the time. A deep exhaustion.

2009 was the scared shit year.

2010 was the year of fighting, chemo, and insurance pains.

2011 was the plateau. Was the "holding pattern".

2012 has changed. The way things work, the way he thinks, changed.

He's not going for more chemo. He made it very clear a long time ago, he could not face that fight again. Losing so many days to chemo, sickness, fatigue; for something that wouldn't raise his Quality of Life.

But, that part is hard to focus on, even though I remember when it's now in my face. When the inevitable has started to really happen. As much as I appreciate you, Dear Readers, this is still a way for me to talk to myself, to preserve these thoughts. A record of Death.

I don't know how to tell the people who are not around him so often how he is. I don't have the words that dull the sting. I live it, every moment of the day; but telling the other people who love him and care; so much so it hurts them more to see him like he is than stay close.

I just don't know anymore; I don't know what he wants. It's so hard for him to really grasp a concept to be able to articulate his desires and needs now. My biggest worry and fear is he is no longer getting the comfort he wanted from living with me.

I am so tired, but so guilty that I'm not doing "more". I can't even begin to know what "more" even is, but I still feel like it's not enough for him. I'm not doing EVERYTHING I can to make it more "fair" for him.

I've cried a lot this week, perhaps more than in the past month combined. It's terrifying to feel like I'm really losing him again. I have flashbacks so often to 2009 and the summer and the tumor, and how scared, how perpetually frightened I was then. He wasn't working and my hours were part-time. Money was always a worry. We were fighting over stupid things and I just did not know why. He was withdrawn, angry. He was no longer laughing. It was dark. I remember our huge 4th of July fight. I remember wondering if, on the Thursday before we found the tumor, I would end up divorced before a year of marriage that know one even knew about?

All of that keeps coming back.

Some days he feels/remembers/thinks he is in a time around 2005-2009. He's vaguely aware time has passed, but it's such a hard concept for him; time.

It's so weird, and so painful to see his brilliant brain doing this to himself. He knows me, but not always who he is anymore.

He has not been my "husband" in a long time. He cannot even remember to say "I love you" to me daily. It hurts, but I try to keep the pain down, like a bruise. The scary part this time is not that we don't know what's going on. His medical team and I are fairly sure there's something going on again; most likely another tumor(s). Since he doesn't want "treatment" there's no point even checking right now though. Schrodinger's Tumor. Better to just not be imagining what is there; to be unawares, and he is.

There's the smallest kindness in that; I don't think he is very aware at all just how much has slipped away or that there might be a tumor. Well, I guess today he was talking to the SW and thought he was back in 2009 and knew he had a tumor, but didn't know it was removed.

He gets a lot of details confused.

I knew this time would be coming. I knew from the time he went into the ER and I saw his CT scan. I knew from the Oncologist, the Radiologist, the Neurologist, and the Hospice team.

I knew it when we would have talks about his wishes, and I knew it when I had to ask for the urn to be made.

But, facing the end, it's hard.

I know statistically if there's another tumor and he doesn't treat it will be a couple weeks to maybe 3-4 months.

It's hard to think past tomorrow, maybe a few days from now.

I keep feeling these conflicting portions of myself scream out that I'm both way too young to deal with this pain, this heartbreak, this loss, this responsibility, I also feel so so so old, so aged, so seasoned to certain ways of life and Death.

The Social Worker said it was nothing he felt I had to address today/tomorrow, but he'd read next week or help me write.

It's terrifying having to be so strong.

I'm thankful for the bit of local, physical support I do have, but I'm trying to be open and vocal about needing more.

Things and times I truly believe will only get harder from this point on.

I keep wishing I had my best friend, my husband with me to give me strength.

Terminal brain cancer in a 25, now 27 year old; it's unfathomable cruelty to watch.

Mini-reflections

We had a super long day yesterday; about 4 different people (Hospice) came by during the day! But, Wash and I both had a good chance to talk about some issues, and get some tools to really help his life (and mine by extension).

So though he did sleep in until almost 10am today (stress, physical movement, and emotional processing all drain Wash) and was a bit physically slow to start, Wash seems mentally and emotionally "better" today than he was in the past couple days.

He's doing some thinking and my hope is he is realizing that he has a LOT of help right now, and he does not have to feel so "alone".

I had a couple good moments as well.

My Social Worker, Dave*, shared a little of his background with me over the past few days and it is - it feels like I have a solid foundation now, I have more confidence in certain parts of my life and needs, and I feel stronger to even ASK for help now. We spent a little while talking and reminiscing and I had such a nice moment when we both realized that individually people from our lives had asked us the exact same questions and we gave almost verbatim answers.

Mark over at Trouble Blogging; http://troubleblogging.blogspot.com/ I think would appreciate it as well. Certain things married/partners understand. Certain things you can't even imagine until you become a Caregiver to the person you love and were intending to spend a long life with. [This blog is GLBT*Q friendly. I wish every consenting adult who wanted to pledge their life to another consenting adult could, legally. I don't care if the term is "partner" or "husband" or "wife" or "lover". They are the person you love, care for and about, and want to spend your life with. That is enough for me. A Government refusing to recognize your status as the partner does not negate the loss any. /Soapbox]

I also wanted to take a moment to remind myself to thank and remember how awesome our friend Andy** has been through this.

He has his own shit in life to deal with, and his own grief.

But, he has been such a steadfast and loyal friend and I could not do it without him. In the past few months, half year or so he has been trying very hard to make sure he comes over at least once a week (and in the past month or so he tries to come over several times) to spend time with Wash. Sometimes he takes him out to do "guy stuff", sometimes he just "sits" for Wash so I can get away for an hour, and a lot of time he does what almost no one else does; he acts like a frakking normal friend to us both. He doesn't care how sick Wash is when he is over, he simply understands. He talks to Wash, plays with him, laughs, and makes stupid jokes. He helps Wash to forget he is a "dying" guy and instead, he's just "Wash", Dave's friend.

I want to write down how much it means to me to see Wash still have that last little bit of "normal". To have a friend who wants to see him to hang out, not just "check in".

I know not every one of his local friends can do this. The great friends we have close by we tend to see weekly, and even that cheers up Wash.

But, Andy? He's special. I will be forever grateful for just how well he has treated my husband. For how GOOD of a friend he has been, and I hope he will be.

For every asshole I meet who says something about Wash "deserving" this cancer, or that it is "Gods' Will" for him to be this sick and dying, I have awesome friends like Andy and others who prove that there ARE good, kind, and caring human friends out there.

No drama today, just a day to rest and smile.

*Dave is not his real name

**Andy is not his real name

School-Daze

To me, if a person reads a truth, a verifiable truth, and takes personal umbridge; that person either has a valid reason for being angry; or they feel guilty for empathizing with the painful portion of the truth.

But, I'm weird.

I'm writing this post as a letter; I won't use names to avoid further mmmm, pain, but I will share the story.

Dear MFW,

I think I would be crazy and unable to care for Wash if it was not for the humanity of Hospice Care. 1 & 2 are driving him sad and crazy all at the same time. I am seeing my husband in so much pain, and it hurts me as his caregiver and his wife to see that. I don't want to see someone I love in pain. Emotional or physical.

Rationally I can understand that shit happens. Things fall apart. Shit happens at a really super bad time, and then like dominoes, the rest fall too. I get that, I do. Truly.

Wash doesn't. He sees hurt and he cannot see the reason behind it. He cannot cognate like that anymore.

I know you are right when you say that they are making his death about them. It sucks and it is painful to say but it seems to be the truth. Denial is painful for those around.

Hospice has been so helpful though. As hard as it was to make the decision to call them in, I think it was one of the best things I could do for Wash. He is able to speak to others to gain emotional and physical support. And relief. He can talk about 1 &2 without feeling guilty about even admitting he has problems with them. He can speak about the pain they cause, and hear from a professional that perhaps 1 &2 cause him pain because they cannot face the pain the truth would bring to them. As hard as it is to understand, it is easier to hurt Wash than it is to face the painful truth themselves.

We are taking your advice and trying to enjoy this week instead. We are trying to focus on his happy and high level of Quality of Life and giving him the best life possible while he can still enjoy it. While he still knows who he is and who others are that love him.

I do not know how long it will take him to get passed this. I hope soon. It's hard to move past something you don't understand, and with brain cancer the real truth is he just does not understand everything anymore. Sometimes I fear we are too far passed when his "best" time would have been. The longer the wait the worse he does get and the more he does not understand change.

I feel more hopeful not that I can change this, or cause someone else to move past denial, but I feel hope that I have support; Hospice and a few friends have stepped up, some family too, to really make me feel like even on days I "can't" do this, I can. And I will. I feel more hopeful for myself as an individual and human coming out alive after this, after he goes.

I love you, and I could not do this much without you. Without knowing someone is hearing our story, our pain, our small triumphs.

Things will change, he will degrade, but I feel- today at least- that maybe I don't have to die with him. Maybe it will be ok for me to say "Good-bye" and not "Wait up".

I guess I have to fight to live to see.

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.

Out West

Developments.

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

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

I will write more after I talk to his family.

Your kind thoughts and prayers are always welcome and appreciated.

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.