Hard Words

It's been a while since I've felt comfortable enough, or had the precise words to explain what is going on in my life past the physical details. [Foot not fully broken/fractured, still fraked up for a few weeks.]

Births, marriages, engagements, deaths- too many, pregnancies, jobs, new locations.
This is the excitement and progress of my friends and family.

I am happy for them. I have far more hope for any of them than I hold for myself.

Roger Ebert in one of the short notes he sent to me said that it was alright to write about the horrid parts of life. The nasty parts of cancer not shown in those films with a happy ending. It is ok to share the utter desperation, the desires, the lowering of one's self on the chance for mercy from a world that holds no "fairness".
"Truth is not always a happy ending." R.E.

How very true.


This post might hurt. It hurts to write, and I'm sure for some it will hurt to read. Cancer and dying hurts too. Living and knowing the one person you loved, who loved you back, is gone and will never ever come back- hurts.

"Life is pain, highness. Anyone who says differently is selling something." - W. Goldman [The Princess Bride]

When we got married slightly to this theme, that quote meant something so different to me. Wash inscribed my wedding band with "As You Wish" on it.
It's quite amazing how much foreshadowing our relationship has without either of us really picking up on it. I had him nicknamed "Wash" within weeks of us dating. We both knew what happened to Hoban in "Serenity".


I am not "stuck". I am however, mad lately. I'm mad that people around me who have not felt this pain feel it is appropriate to tell me how to deal with my pain. I'm mad that they think there is some magic number of weeks, months, or time that can pass before I should be where they want.
I'm mad that people want the Tashi "back" that does not exist anymore.
She's gone just as surely as her Wash. Never coming back.
I think that acceptance is slowly happening.

I'm mad at myself for hurting at someone else's happiness. I am utterly confused at how it is possible for me to feel so happy to see friends get married, or have a child, or get hired at their dream career, or become pregnant- and so mad at my own life for being deprived of that.
I had 4-6 weeks of marriage before the cancer began to grow in his brain.
Twice we almost stayed pregnant. Twice we both held onto Hope that in some way (biologically at the very least) Wash could continue on. Twice it ended in blood, pain, and tears.
Leto the cat is now the only living part of Wash I still have, or can hold.

I find less and less to talk about, socially. I have little I can relate to with my peers.
The Widow's support group is also made up of people in pain like me, but all so much older. All who had time or a chance at a life with the one they loved. They had children, reasons to wake in the morning and function. They had homes they built up together that they could get comfort from. Years, sometimes decades of memories to hold on to. To recall. To soothe.

I am mad at the people who suggest that because I was "only" married for a short time that I can/could/should "move on" now. That 6 months is enough time to "heal".
I am mad at those who imply I will have or find love again. I had it once. I found him once. I gave my heart and soul once. Who are they to know my intentions? Who besides my own self should say if I even desire to love again?

I am at the age where so many of my peers are married, engaged, pregnant, or having children. Over and over I see milestones I wanted to have myself, and cannot.
I will never have a new birthday card from my husband again. I'll never hear him sing to me that I'm his "Queen of Argyle".

I have pain. I have sorrow. I have tears. I have little Hope to share.
I have a large space to carry pain, to support others. Some days I wake as Atlas, carrying the weight of the world upon myself, and not questioning why I do this. Why I carry this burden.

I am hurt that Cancer keeps stealing people we love. I am tired of this. I am 26 and so tired.
I carry Hope, but it is not a weightless burden.

Hope is painful. Hope does not protect the heart. Or the brain. Hope is irrational, one of the confusing parts of being human I am still trying to comprehend.

When I began this written record I chose "Learning to Hope" in the sense of Hope for my Wash. For his future, for his fight, for us. Now, I think the Hope is for me. How to keep wanting to Hope, when I know so well how much it can hurt. How the nights are spent either awake, afraid of the silence and dark, or sleeping restlessly in a dream of chasing someone I can never catch.
Hope that someday life will become desirable, not just passive, waiting for the moment I breathe out but not in.
How do I continue on, when I still hear him in my head? When I can still read his stories and words? See the world from his eye in his photographs.

He is gone but save a digital footprint of his existence.

And, yet.
Yet...

He is the Gaius to my Six.
Whispering in my ears. Touching my hair. Standing in his kilt. Kissing my neck. He lives in me, in my brain, in the memories he shared and gave to me to hold. I cannot begin to imagine how one can "get over" that.


This is my pain. My grief. My anger. My sadness. My soulmate. My timeline.
My life and future to mourn.


Yes, I still hurt. I can smile, but I ache.
I feel a need to hide away from the happy world. From the lives others are living. I am not living. I exist right now.


Is this the trade-off? Is this the start of my re-payment? A karmic debt I owe?
Is this the price of love? Of the short, but fully complete happiness I once had?

I think I am still too young to say that for certainty. I think I am not omnipotent enough to say that for certainty.

If this pain is the start of the price I now pay, I owe.
I owe this pain, and I own it.

I gave my self and my heart up to him. I willingly gave it. I gave him everything I could.
From 2008-2012 I had his love in return. I had him. I had unconditional love for all of me. I had more than a friend. I had more than a lover. I truly knew Hope, in a painless sense, then.
I had his love.

If this pain is my price, it is mine.
I would do it all over again, in a hummingbird's heartbeat. Knowing the pain, the tears, the sadness, the blood, the loss. I would do it again.
He was worth it. 4 years, or 40 seconds. His love was worth it.
It does not ease the pain, does not put a balm on my wounds, but it is the truth.
I would put myself through every bit of this pain again, for him.


I can wish my story had a happy ending. I can wish it was a different type of cancer, a different disease, a life of health. I can write that we struggled, but overcame and lived happy forever until we both died on the same day, decades after our marriage. I can write we had children, and grandchildren. I can write we both had perfect dream lives.
But I write truth here, not fiction.

There is no "happy ending" in my life. My love story is a tragedy, not a happily ended romance.



Photo is from approx 2004-06 from Wash's Speech Black Book. [Speech and Debators will know this.]
This is his opening selection from "Will the Circle be Unbroken" by Studs Terkel that he used in an Oratory or Dramatic piece.

01.20.09

I've been awake for about an hour.
It just hit me.

The last time I saw this, the last Presidential Swearing-in, Wash was still alive. We were watching history being made together, and how excited and happy we would be to tell our children about getting to witness that day.
We were about 6 weeks away from getting married.
Wash was in school, and had a "brings in money" job, and a better one lined up after we got married and came back to AZ.
I was still working full-time. I saw myself being able to go back to school to finish my own degree in a year or two from that point.

Neither one of us thought in any way, at all, that he or me would not be there just 4 years later.

We thought that it was the start of a new wave of Hope and Change, but it turned.

4 years ago this day, we thought anything was possible.
Now, it's just me.

One "term".

I'll most likely be crying a lot today.

Once More (again) with Feeling

Things will never be back to "normal".

I won't go "back to [my] life".

I'm changed. Forever.

If not purely by my marriage and almost 4 years of living with another person.

I'm not "The Queen of Death". I'm not "Bones". [and ye gods I have hated those nicknames]

I'm me.

I'm Tashi.

I'm watching my husband die, more and more everyday.

I'm Tashi.

I'm not a wife anymore, though I've kept all my vows.

I'm a nurse, a help, a guide.

What becomes of me when he goes? I've done the statistical odds of dying at the same time as him, it's not a number in my favour.

I left college.

I left my work, my job, my contacts.

I never was smart enough to find a cure, to save him.

We never got a house, only our little rented "home" that I'm going to have to tear apart even before he dies.

I'm going to have to pack away my books, my closest companions and friends.

I'm going to have to put away things which we both love, but cause danger.

There is so much change.

I cannot see myself on the other side. I cannot see how *I* will remain with that much change.

I'm already so different. Who am I now, who will I be then? Will I have any part of my own true self left?

I've given so much away already.

Given so much of my life to him, to keep him going, breathing, smiling, loving.

Must be a bad day. My movie lineup is "Once More with Feeling", "Harold and Maude", "The Royal Tenenbaums", and if those don't work- JT's "Titus".

I'm lost.

I'm leading someone, but I'm lost. He's mostly leading me now, leading to the end. Saying goodbyes.

Soon, he'll go.

I'll be lost again.

And then, alone.

How can that ever lead to "normal".

How could I go back to what I was?

I have a few hours alone. I've cried, sobbed, and had two asthma attacks.

I'm going to go sit in the shower and probably cry more.

I try to think about the details of the next couple weeks and my brain just locks; there's so much pain it won't let me think about it. I just get headaches.

I want to clear my head and bowl.

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.

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.

Wash's parents were supposed to come in and spend this week visiting him /spending time with Wash / helping give me some Respite time.

They cannot come.

Kind of waited very last minute to tell us.

Rationally I can completely understand it.

Emotionally? Like my husband I am beyond crushed. "Disappointed" is a light term. He wanted and needed this time with them.

We don't know how healthy or mentally aware he will be the next time they decide they can come.

I had to clear my entire schedule this week, now I am scrambling to fill it in.

Yes, I was looking forward to a little Respite too while they had a chance to bond.

Wash is just sitting on the bed hunched over and cuddling his teddy-bear, Hoban.

Fuck bad news days like today.

Life has been SO GORRAM unfair to him, I hate days like this.

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.

Deny the Lie

This is a busy and stressful week for us.

Wash meets with his Oncologist, his Neurologist will check the MRI he's having tomorrow (again, barring any Insurance Fuckery) and at the end of the week he goes in for a follow up/diagnostic with his Radiologist- since not too many of GBM patients will make it two years out after 42 days of radiation to the brain, Wash needs to get checked. They will do some tests to make sure he is not showing signs of developing different cancers from the treatment (apparently Leukemia is common) and check his mental status.

Wash is pretty scared of this week. I don't blame him. I'm scared too. I want him to be "stable" still. I want another MRI where they tell us, "Nope, no new tumors!". Every time we go the odds grow more and more against us, but I still have to Hope.

I have seen what happens, what is to come for the End. I'm not ready to face that yet. Neither is he.

Sadly though, this testing week always sends him regressing. He is acting about 4-8 years old for the past few days. Very very distracted, just wants to play with toys or games, not interested in talking, reading, creating. He's Depressed and scared. I'm hoping if we have some good medical news this week it will help, I'm also going to talk to the Dr about adding on another Anti-Depressant for Wash. He does not have the high Quality of Life right now he deserves or can have. We're not rich at all, I barely can make ends meet each week let alone the month, but there are things we can both do for free to keep happy- he lately has just had no interest.

I feel like shit as I have not gotten around to writing all my Christmas thank-you notes yet. Dear Readers, they are coming. Wash takes my attention and priority first. I feel bad though still, I wish I had more time or more help.

We have had some good moments in the past few days, absolutely. But, when terminal cancer is literally your life, the day you find out just how sick or stable you are can be defining. And Wash has that day every 6-8 weeks. Mentally, that is a lot of stress.

As hard as it is, and some days I feel ready to give up myself, I want to keep writing. I want this record here after he is gone. I want to be able to really remember how the days were spent, how my emotions played, and I want to recall who my husband was. Not a perfect man, but entirely wonderfully, beautifully, human.

Sadly, even daily time in the garden in the back has not helped his mood.

I have to be the one to be Hopeful for the both of us.

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?

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.

Mires

I have not been wanting to write lately. More emotions in me than real articulate thoughts.

It is beyond hard to find let alone have a voice. I feel like I've been pretty silent for years and now when I'm told to speak, and speak up, it comes back at me as being "selfish" and "whining". I am genuinely confused.

I'm scared. I'm scared mostly for the future for all the uncertainties. I'm scared of being put in a situation with no reference and expected to know where to go and what to do. I'm so mad lately as well, that life and our future is so gorram unfair.

We had two wonderful days of Hope, and then weeks of waiting for bad news we both know is coming. Brain cancer, two brain surgeries, a year of chemo, and too much bad personal news in 2 years.

It's just so much hardship and disappointment and unfairness, topped over and over.

It seems like I'm being told it's wrong to feel upset at the fucking unfairness. I just wonder when it will end? What if any point is there to keep going, to keep trying when it never works?

It's a hard day, and one with setbacks.

I've taken him back around to his follow-up doctor visits and though it still seems to be in the "not a brain tumor" category, there is still something off. His doctor thinks he is still having some kind of seizures, I guess ones that are just in his frontal lobe- his body does not seem to be as affected, but his emotions are just... uncontrolled. So next on Wash's to do list is get an EEG done (he may have to have more than one but I'm not telling/reminding him of it.) and a 'pressure' test to check the inside of his head and make sure his CSF is not too high. He will then see an Epileptologist (someone specializing in Epilepsy) and they can decide to change his anti-seizure meds, or perhaps put him back on low dose steroids. Not sure what yet, but he's on the right path to get help now.

Sadly though, this was I guess not the news Wash was wanting or expecting. I think he believed he would be told he was "fine".

He's not.

I am just tired. Physically and emotionally. Happiness seems to me, seems not to be.

Back to basics

Wash's med adjustment has left him more tired lately- common side effect. I've been feeling more tired lately, feeling like I have to do a lot more, worry more.

I spent a good chunk of time cleaning fish tanks this weekend. Scrubbing algae and cleaning water, protein skimming... Wash spent 6 days putting off cleaning the cat boxes and then almost 2 hours bitching before he cleaned them. The meds seem to make him a lot more whiny in the mornings. I've been switching to having him do his (like, 3) chores in the evenings.

I've also been trying hard to make sure he/we are getting out every day for some kind of a walk. I feel so lax on my exercise lately, and Wash won't get out of bed unprompted, so it all falls on me to be my own motivator and his. Hard stuff some days.

I've been trying to drive a little more lately to make sure I get over my fears/trauma of the tire blow out. I've noticed that I've become a lot more sensitive about night driving as well, which I haven't been since about '05 when we had the Baseline Rapist/Killer (s) out. I partly also wonder if my vision is getting worse and perhaps that is contributing towards my hesitation to drive. The weather is calming down some but not enough yet for Wash to really get to spend a lot of time outside.

We started to watch 'The Sopranos' this week; we're about halfway through the first season (neither of us has seen it before) and so far I find it hilarious. I imagine it might have some darker plot lines coming, but to me watching it now, there's just a level of humor at the writing I can't deny.

So far I've managed to go halfway through October without a major pinkwashing/cancer mental break. I'm happy and proud for that. I've separated off contact with a few people who I know would say some stupid shit this month and I have a core of good friends around who 'get' how the Pinkwashing makes me feel. All cancers suck, true... however it is brain cancer that is going to take my husband and I wish it would get even half the attention/awareness.

October also marks my birthday- coming up at the end of the month.

I always seem to get (extra) depressed around then. I don't think it is seasonal as I love fall and winter and spend time outside. It is just clockwork since I was about 6 or so that the 2 weeks or so before my birthday I just feel more depressed, less social, more anxious...

I just want it to be over. I am always expecting something horrid to happen, and honestly almost losing Wash on my 23rd was beyond no fun. Breaking my arm for my 8th. Having a family member forget my 16th. Being vomited on by someone on my 10th.

I don't have a real good feeling relationship with my own birthday.

I'll be 25 this year. Young, it was how old Wash was when he was diagnosed and given less than 2 years to live. At the same time, I've lived lifetimes in as long as I have been alive, I feel this absolute divide with my youth now. Somehow it is all done and wrapped up, no more 'kid fun'. I feel robbed to a degree. This unfairness of life, which cast me so mature so very very very young has yet again found a way to toss me to the side of what society tells us is 'success'.

Some things in life change, mature, grow. Some things stay static. Both can be good or bad or even both.

I just don't know where I am anymore.

Surrender

I haven't written in a bit.

I've been doing a lot of quiet thinking lately, reflection, and self panic.

I'm having birthday related panic set in. I'll be 25 shortly. I feel 20 years older than that. I feel like this should be a mark between "youth" and "true adult"... and yet, I don't feel like I contribute to society. I feel like this began two years ago and I've BEEN "grown up" this whole time. Part of that is realizing that as an adult I won't always have the answers, even if that's what I think partly defines an adult, someone who knows.

I don't always have the answers. I didn't make the connection earlier to Wash having seizures again, even though I saw the end results. I am not a doctor and I'm not a neurologist. I don't know it all, but I have to know enough to keep him alive, safe, and happy.

So, Tash, let's go into what happened this weekend.

We got lost on the way down to the wedding. Wait, let me start earlier; we were an hour late getting on the road in the first place, thus starting my stress before noon. I wanted to make sure we had LOADS of time to find the place and get settled. Then, well, we got lost a few times. First the wrong city, then the wrong park entrance to find the actual site. This also stressed me. Wash was not able to navigate and that just, it was unfair of me to expect that from him, but at the time I could not see it. I had to stop the Blazer several times on the rough roads and turn around. (Note to self, pick up really good state/city map for car)

So about 30 minutes before the ceremony was to begin we find the right place (and was charged $9 to enter, something I really wish would have been mentioned on the invites) and park. The couple decided to have the ceremony itself at the Red Rock State Park in Sedona. It was literally picturesque. The guys were dressed in browns and deep reds and the bridesmaids were in these soft red flowy dresses. The bride was beyond beautiful. I really hope I looked that wonderful at my own. She was so happy as was he and it shone through. It was a lovely ceremony and just a moment I was so glad to have been part of.

The real trouble started after the reception. We had to leave early to make the drive back down so Wash could get his meds. And we got lost again. I had not eaten much all day. Wash needed his pills. Stress building. I find a little sandwich shop that gives me directions back and I head towards town and lights. We're out in the country here and there were not really lights around. When we got back to "town" and a stop light I do what seems legal and prudent and stop at the red light.

BAM!!!!!!!!

That's when we were rear-ended.

It was an older truck and the lady driving looked to be about my age. She was smoking a cig and shaking. No one was hurt, but I did learn this was not her first accident and copied down her licence and plate number in case she gave me bad info. I could not check the back of my car then, there was just literally no light.

So, we buckle back up and head back out.

20 minutes later and 30 miles of road between us and the nearest town and I see the freeway. We pass a small gas station and then get on the on-ramp.

BOOM

The car veers hard to the left and turns, almost tipping over the side of the ramp. With no guard rails on it. I hold the wheel at firmly as I can and steer the car into a line along the "shoulder" on the left side of the road. We've come to a stop halfway down the ramp and a foot away from going over the side. It's a least a 30 foot drop in almost total darkness- terrifying.

My front driver's side tire is gone. I can see my rim and a small bit of rubber left at the top- the rest was just shredded.

Mentally I am a wreck. Two car accidents in an hour, leaving me at 90 miles away from the city, from help, from home, from Wash's pills, from food.... I called AAA and my mum. After going back and forth with both parties and my very limited options, we were towed back to the small town and my parents started the drive up to pick us up.

The tow driver was as helpful as he could be. Apparently he was off duty and heard the local call go out and noted it was a medical case (Wash needed his pills!). The driver's little brother also has seizures so he hurried to us to make sure we were taken care of. He also scared the fuck out of me by saying that the cars he usually picks up on that stretch roll off the ramp or blow out on the freeway... and he usually just gets the cars (ie no people survive).

FUCK!

We came close to DYING. My first tire blow out (not a slow flat) and it happens in the place that could kill us, but didn't.

We ended up at the Walmart in Cottonwood. For a few hours. At 10pm on a Saturday. I could write a whole post on that alone (I may, later) but for now we will say they were hospitable and warm. My parents showed up a few hours later and late at night brought us back down to the Valley. They rock. I also felt about 15 years old on that ride home, but that's for another post.

Thankfully we had some good luck come in and I did not have to take a shuttle back up to the town. Some of the local friends had stayed up for the wedding and some really really really awesome friends drove my car down for me.

So we have Betty back and new tires. I learned a few good lessons and I held myself together fairly well. There were a few Aspie moments when I was just sobbing wanting to just go in my closet, but I did what had to be done.

I have mostly been in reflection the past few days, thinking of the accident, thinking of my behaviour and my responses and thinking about my own mortality. I have so little time with Wash, so little time to be a couple, to be the small family we are, I don't want to lose anymore of it.

I am thankful for seatbelts. I am thankful I don't drink and drive. I'm thankful that when my tire blew we did not go off that ramp to our deaths or mutilation, but that I did get the car under control and did get it safely to the shoulder area.

It is so easy in this world to die, and sometime such a hard climb to live.

I still think it's worth it.

Pic is from the little bank inside the Walmart. This was literally the only thing that evening that made me smile.

Loose tongue

Alright, I need a safe place to say this and as it is my blog, frak it... I fucking hate the idea of "50/50" movie. I'm happy it was "inspired by a true story", but FUCK. Not everyone who is young and gets cancer ends up with 50% or better odds. Yes, statistically if a cancer is caught in a "healthier" younger person they have a better chance at survival, but it varies with every person and every cancer. Some people have to live with being VERY young and given a death sentence by their cancer. It isn't something to "overcome" in their life, it's a fucking god-damned death sentence. It isn't a "go through hell for 2 years and then be 'cured'" type. There is NO cure and there is NO long term survival odds. Long term for Glioblastoma tends to be over 2 years. Think about the mental trauma of knowing at BEST you might get 2 more years of life- and being told that at 25. I guess I am still angry.

I guess I resent most the movie is just unrealistic. There might be moments in the film that other cancer patients or their loved ones identify with, but the whole thing is just so far removed from my reality that to be compared to it just fucking hurts.

My husband is 27 now. He has brain cancer. He always will. He will never be "cured"- his type can't be! He will not hear the word "remission" and "glioblastoma" in the same sentence.
There is no Deus Ex Machina for my situation. No happy Hollywood ending. I'm happy it's the case for some people, I wish like hell it could be the case for more. My pain comes from facing my reality, which is the slow death of the man I love and want to spend the rest of MY life with.

But I really don't want to see JGL or Seth Rogan on my TV anymore, and I don't want to be reminded of the day I found a clump of Wash's hair so big that we decided that day he had to shave off what was left. I feel like even seeing the trailer on mute drives me deeper into remembering trauma. Wash hurts too. He see's the trailer and even the fucking title reminds him of what he has lost- what he grieves for; the loss of his chance at life. Someone empathize here and imagine if you were a scared 27 year old, already 'past' when he should be alive and every ad for a movie takes you on a flashback to the day in the hospital when you were 25 and just had two brain surgeries for a tumor you didn't even know was there and a old doctor with no bedside manner came up and said, "It's brain cancer, called Glioblastoma Multiforme, grade 4, radiation and chemotherapy are an option but the incidence of re-occurrance is about 98% and the mortality rate is 97% by 18-24 months."

It's a lot to bear. That kind of weight hurts. It eats at the soul just like a cancer.

I hope any of you all who want to see it go and enjoy it.

But, for me to have the positive cancer outlook just reminds me daily that my love's brain cancer isn't cureable, it's a 1% chance of making it 3-5 years. It's a horrid daily battle of my brain knowing it might be the last day I have with him and the painful hope I might get another one tomorrow. I just don't feel like I stand to watch a movie showing off the hope from how far we've come with 'cancer' and have it be so far from the realities that every cancer is different, and every person who has cancer doesn't always "win".

Who cheers for each day Wash decides to wake up and keep living despite the time bomb in his brain?

He's my heart and my hero.

/rant
//apologies to those JGL fans, nothing against him as an actor.

Shut off

I had lots to say the other day but it seems to have all left me.

We had a good start to the (Jewish) New Year with my family having dinner the other night. Yum. My mum picked up some honey-cake for us too.

Aside from just wondering what service next is to be shut off (we lost internet earlier this week and got it back with some help) and worrying about that, my brain is stuck on Wash. We went to the doc's this week- his ENT to check on the follow up for his eye cyst. I was freaking out as I had received a bill from them for $146~ from his first visit and I couldn't pay that or whatever they would charge to see Wash this week. Thankfully we both got some good news from that trip; the Billing dept had put Wash in as 'No insurance self pay' despite his insurance info being on the paperwork *I* filled out. So, 3 office staff later and two people in billing it was cleared up and erased. Small favours.

Wash meanwhile was treated to a less invasive scan of his sinus cavity and told it was NOT a cyst, or even a tumor. Just inflamed scar tissue. Apparently he broke his nose some 20 years ago and that's just how his head looks in a MRI. Thankfully he didn't need a biopsy, or worse more surgery.

He's just been distant and cranky lately. I ask him for help or to try something or he asks for guidance and then it just... gets ignored. Forgotten. I know that's the result of the cancer, or tumor, or surgeries.... I still get disturbed by it.

There are some other issues brewing as well, but not anything I feel comfortable talking about yet. Basically there have been some statements come out against Wash having comforts, or a Quality of Life- especially if it costs ME anything. To some, I guess his happiness at the end of his life doesn't matter just how much he "costs" to stay alive each day.

I have some ... anger issues, at this way of thinking.

Wash just turned 27. There's a 1% chance he will see 30.

To me, his quality of life is paramount in importance.

It's his life and death. He gets to decide what makes him happy while he can still FEEL happy, and he gets to decide when the pain is too much to go on anymore.

I get so tired and depressed having to explain this to other human beings. To me, it's fucking common sense.

Baking chocolate

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

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

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

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

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

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

Sigh.

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

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

Any of our readers want to help raise some funds?

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

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

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

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

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

Frak.

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

That got offsides, didn't it?

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

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

For all.

Emotions

I did a video update/blog for today.

I remember we could talk about anything

I've been having a hard time lately.

I have clinical depression and have been dealing with episodes since my teens. A few months after Wash was diagnosed I went on anti-depressant medications. I topped out at 4 different ones to deal.

Earlier this summer for certain medical/health reasons I had to stop taking them. With a very short step-down process. I've been dealing with everything on my own, no meds for a few months now.

I've noticed how hard it is. My Asperger's has become a lot harder for me to control/function around on most days. My depression when it happens, it faster and harder and deeper than before. Medication is not really an option right now, and dislike the kind of numbing it did mentally for me.

I bring this up as it's getting later in September. I hate this month. In 2003 my grandfather died on Sept 16. In the bedroom next to mine. My family and myself had been very close in his daily care even through the home hospice period. That was also the time I had my first real betrayal by my then boyfriend and best friend.

Three years later and my other grandmother had been battling leukemia all summer, while my grandfather's widow was literally trying to die. She passed 3 years to the day from her husband, and 7 days later on Sept 23 my other grandmother passed from the cancer complications.

It was the start of a huge cycle of death and loss that continued for another 2 months that year.

I tend to get 'seasonally' depressed around the anniversary of their deaths every year.

This year it just feels all compounded.

GBM is a fuck awful cancer. I literally live just waiting for a sign or a word that a new tumor has grown back. That's the eventuality. It's a WHEN, not an 'if'. I hate trying to force down from my conscious the worry and the knowledge that waaaaaay sooner than I want my husband will die.

There's maybe a half dozen people in the world with his cancer even 20 years close to his age who have made it more than 4 years. He's almost at 2.

I keep feeling like my time with him is running out. I want to be able to give him something, to take him somewhere, to find a way to have a fucking chance to live before I loose him.

It feels like this cancer has taken my youth and my chance for an "adulthood".

I often and lately have been questioning my own worth and value, especially in this society. The message it sends it really one of "move away or just die". There's no financial system in place for those terminally ill and in their 20's. People judge based on how productive one is- Wash can't do what he used to, and no one pays me to care 24/7 for my husband.

I see less and less humans around. People who will take the time, see us as people not numbers. Right now we are a "cost". Personally, I'm loosing my self worth with the peanut gallery constantly chipping that I have "no" worth.

It's hard mentally for me to continue to keep myself going. I have death and debt to "look forward" to.

I want a life with my husband.

I want a family.

I want a job and a career that pays me for the hard work I put in.

Intangible delicacies.