May is National Brain Tumor Awareness Month.
Time again to post the first story of how we came to find Wash's brain cancer.
Please Read.
To learn more about Wash's brain cancer, GBM, visit SaveWash
I'll have a proper update later on.
Share the warning signs. Be aware. Reach for help if you need it, or know someone who does.
I don't want anyone else to die because they were sick and could not afford a licensed Doctor.
Showing posts with label brain cancer. Show all posts
Showing posts with label brain cancer. Show all posts
Wednesday, May 1, 2013
Thursday, April 18, 2013
Doves Cry
I am angry.
I don't know if this is a passing thing, a "phase" as it were, or if this is my new state of being.
I have a small cold. I'm not certain how my low grade fever is effecting me.
I am angry.
I am angry there is no space for me.
I am angry there is no safe place for me to talk, to someone.
I am angry that Hospice has to be considered part of the "safety net".
I am angry at my friends, the people I love. I am angry and love them at the same time. It's a painful contradictory feeling.
I am angry at life. I am angry at the inherent unfairness. Of it all.
I am angry that every week I see more friends have birthdays that place them at or right next to my age.
I am angry that every week now someone new is engaged, married, or pregnant. In about 6 months I suppose I'll be angry at all the births around his death date.
I am angry at myself and society. I am angry that I will never be pregnant again. That I will never carry life, that my husband will never live on. That I have no more family with his death. He was my family unit, and now it is singular, and I'm angry that I had so little time with him.
I am angry at the milestones I have and will miss.
I am so angry at society for telling me I am worthless if I do not reproduce.
I am angry at society for telling me I am worthless for being poor. I am angry when people say it is my own fault, my own choices. I am angry when someone implies Wash wanted or asked for terminal brain cancer.
I am angry at myself because I cannot be fully happy for my friends.
I am angry at comments about couples trying to get pregnant for under 6 months, and how upset/sad/frustrated they are. I am angry when those same people then immediately get pregnant.
I am angry that I have no one to talk to.
I am angry at my best friend for dying, for leaving me. I am angry at myself for that very thought. For not being happy he is not in pain, like he wished.
I am angry when I stare at his TARDIS urn every day and night and wonder if anyone else remembers him?
I am angry that he died before so many wonderful things.
I am angry he will never see the Doctor Who 50th Anni. special. Or be part of it in some way, which he would have; if he had not had the cancer and was still alive.
I am angry at being told I have to change so many things.
I am angry that so many things will change and have regardless.
I am angry that I can remember the last hug I had from him, that I remember it was the last.
I am angry that I have to live a future without him. I am angry that I wake up every morning, and he does not, will not.
I am angry and it feels like a hot weighted stone upon my heart.
I am angry that I feel so utterly useless.
I am angry how disposable I feel. I am angry at the daily implication that my existence is worthless- or worse, costing of others.
I am angry, and so sad.
I don't know if this is a passing thing, a "phase" as it were, or if this is my new state of being.
I have a small cold. I'm not certain how my low grade fever is effecting me.
I am angry.
I am angry there is no space for me.
I am angry there is no safe place for me to talk, to someone.
I am angry that Hospice has to be considered part of the "safety net".
I am angry at my friends, the people I love. I am angry and love them at the same time. It's a painful contradictory feeling.
I am angry at life. I am angry at the inherent unfairness. Of it all.
I am angry that every week I see more friends have birthdays that place them at or right next to my age.
I am angry that every week now someone new is engaged, married, or pregnant. In about 6 months I suppose I'll be angry at all the births around his death date.
I am angry at myself and society. I am angry that I will never be pregnant again. That I will never carry life, that my husband will never live on. That I have no more family with his death. He was my family unit, and now it is singular, and I'm angry that I had so little time with him.
I am angry at the milestones I have and will miss.
I am so angry at society for telling me I am worthless if I do not reproduce.
I am angry at society for telling me I am worthless for being poor. I am angry when people say it is my own fault, my own choices. I am angry when someone implies Wash wanted or asked for terminal brain cancer.
I am angry at myself because I cannot be fully happy for my friends.
I am angry at comments about couples trying to get pregnant for under 6 months, and how upset/sad/frustrated they are. I am angry when those same people then immediately get pregnant.
I am angry that I have no one to talk to.
I am angry at my best friend for dying, for leaving me. I am angry at myself for that very thought. For not being happy he is not in pain, like he wished.
I am angry when I stare at his TARDIS urn every day and night and wonder if anyone else remembers him?
I am angry that he died before so many wonderful things.
I am angry he will never see the Doctor Who 50th Anni. special. Or be part of it in some way, which he would have; if he had not had the cancer and was still alive.
I am angry at being told I have to change so many things.
I am angry that so many things will change and have regardless.
I am angry that I can remember the last hug I had from him, that I remember it was the last.
I am angry that I have to live a future without him. I am angry that I wake up every morning, and he does not, will not.
I am angry and it feels like a hot weighted stone upon my heart.
I am angry that I feel so utterly useless.
I am angry how disposable I feel. I am angry at the daily implication that my existence is worthless- or worse, costing of others.
I am angry, and so sad.
Wednesday, April 10, 2013
Cunning
A few days ago a report came up on The Mary Sue relating to certain sellers on Etsy.com having their accounts suspended or blocked because they sold the hand knit “Jayne Cobb” style cap from the (un-aired) Firefly episode. Other sellers were reporting getting Cease & Desist letters from FOX regarding their selling hand-made knit caps. As a lot of things on the internet do, news spread around the “Browncoat” (Firefly/Serenity fans) forums and sites, and a lot of attention was turned back on a show cancelled by FOX more than a decade ago.
When my late husband and I began to first date, we had already established at our first 'meeting' of each other what big Browncoats we both were. Though we had intended to be watching the new season (3) of the BBC show Robin Hood we ended up mostly speaking for hours on episodes of Firefly or how wonderful it was the fans brought about getting support for Serenity to be made.
That was in 2008. I had been to a previous showing of Can't Stop the Serenity ; a wonderful benefit for Equality Now that was enjoyable not merely for the film, but for the camaraderie of the fans who watched it with me. By the time summer of 08 had come, my husband [nicknamed early on by me as "Wash"] and I were more than casually dating and he invited to take me to our local showing of CSTS that summer. That was the end of June. We both excitedly did what a majority of the FF/Browncoat fans did, and Cosplayed. That first year I went as River Tam and he as one of the "Two by Two/Hands of Blue" agents.
That was the year he also picked up a little brown wristband that simply said, "Can't Stop the Signal".
[Brown band is his Browncoat, the yellow came from the Lance Armstrong Foundation. This is also our kitten Leto. Bonus kitty pic.]
He also received one other small thing. As we had been dating/courting for a few months then and we knew ahead that we would be attending CSTS together, I had decided to complete my first ever knitting project and make a "Jayne Cobb" style hat. I had no set pattern for it, just a copy of the DVDs and a very understanding pause button. I worked on my evenings, weekends, and lunch breaks to finish the hat in time for the show, which was late June. [Even knowing he was going to CosPlay as a different character]
I will never forget how his face lit up when he saw it, and even more when he realized it was for him. That I had made him a "Cunning Cap".
[I think he was pretty happy. This photo from 2008]
We both took turns playing with it for a long time, and enjoying a small quasi-tangible link to what was our favourite show. Serenity was the movie we chose to watch on our first date, sitting in a packed living room he shared with 2-3 other roommates. He was my Wash, and I his Zoe.
We even bothered our poor cat to some degree by making her wear the cap.
[Yes, I am holding a lightsaber. I am comfortable enough in my own geekery to accept more than one Space Fiction love. This is also my most serious "fearless" face.]
The hat to us became much more than a love token, or a symbol of our beloved show.
In 2009 my husband was diagnosed after two emergency brain surgeries with a terminal brain cancer.
For him, the quote from the episode featuring the Jayne Cap become almost his daily mantra.
"When you can't run anymore you crawl. When you can't do that... find someone to carry you." [Firefly ep. The Message]
My husband ran. Then for a long time he crawled. When the cancer took more and more of him, it was our friends, and our Browncoat friends who helped to carry us both. To care, to help, to carry.
I understand there is a lot of questions and animosity going around right now bouncing between the FOX owned IP, the 'Helper Monkeys' at ThinkGeek , and the many single person owned shops at Etsy who have been making by hand for years and years Jayne Cobb Cunning Caps to sell to the Browncoats who adore, love, desire one- but for whatever reason were unable to do so themselves.
The way I see it, FOX owned IP is making money off this venture, absolutely. Especially with the surge of "Geek Culture" becoming more acceptable and mainstream public. I know ThinkGeek is making some money as well**, but as they are a business with more than one employee, they do also have to play by legal rules and acquire the "rights" to a knitted cap design to be made to quality specs by another company- Riddle Junction. Not knowing too much copyright law myself, the only real comment about Riddle Junction I can make is that they are a 3rd party given the license by FOX to manufacture the knit caps then sold by ThinkGeek. TG is now in a sad position of angering some of the very fans they felt they were trying to include. Etsy shops that have had to be shut down are suffering- and by no means were these large scale operations bringing in "big bucks"- mostly female owned self-businesses covering costs of materials and shipping for other Browncoats. One such shop run by a wonderful woman named K. (who wishes to remain anonymous in the hopes her shop can be reopened) makes many geek themed items (among them from Doctor Who, Firefly, Battlestar Galactica and more) but did not herself make any of the knit caps or list any on her Etsy page. She only had other items such as bookmarks or buttons on top of her own artwork that she always listed as “inspired by *name of show*”. Yet, because she used keywords relating to the show, her Etsy shop has been suspended. She also disclosed to me that the money she makes off her Etsy store goes to buying groceries.
What I have witnessed over the last few days on the internet is a lot of anger, frustration, sadness, and some hate.
So, who is really "winning" with this? By a monetary standpoint, I'd say FOX is coming out ahead.
From a publicity standpoint, I think many larger issues are now being brought into light- how Intellectual Copyright law is applied, how certain sellers are suffering and if a knit cap with no set pattern (other than a tricolor shading, a pom on top, and ear flaps.... which sounds like any of these hats of the thousands of images in a quick google search) is limited merely in name.
What my hope for the other Browncoats out there is to have a discussion; how can a specific fandom deal with IP/Copyright laws, and what if any, is a responsibility to the fandom by the company that is kept (in part) in business due to the loyalty of fans?
All I personally know is that since my husband passed away last fall there is only one person in the world I would consider passing along my Wash's Jayne cap to- his most adored television show writer; Jane.
FOX may or may not consider that cap part of their IP (since I made it myself from no set or bought pattern, and did not sell it myself) but it means ever so much more to me.
************* EDIT 04-10-2012 11:21AM
As of 11:30am on April 10th, 2013 ThinkGeek announced through their online media they will be donating the profits/proceeds of the Jayne Caps from Riddle Junction to Can’t Stop The Serenity . While I personally think this is a massive step in the right direction, the larger issue of using questionable legal tactics to put (even temporarily) artists and fans out of business is an issue FOX and all other studios should be considering and talking about. As it was the fans, the Browncoats that helped to push the cancelled show into a follow-up movie years later, the power of a fan-base is a strong one. With respect to the original artist’s work, the fans who love and admire the show and who wish for some tangible connection to it are the ones who now suffer. The individual artists who lovingly and with care hand-make these tangible items, most slightly different from another, and most an homage to an item they love, are now the ones who pay a high price.
ThinkGeek heard the fans and responded timely and in a charitable way that some Mudders must approve of, perhaps now we and other Browncoats can petition Etsy that doing the proper thing is human, important, and matters.
EDITED 14:30 FOR CLARITY
When my late husband and I began to first date, we had already established at our first 'meeting' of each other what big Browncoats we both were. Though we had intended to be watching the new season (3) of the BBC show Robin Hood we ended up mostly speaking for hours on episodes of Firefly or how wonderful it was the fans brought about getting support for Serenity to be made.
That was in 2008. I had been to a previous showing of Can't Stop the Serenity ; a wonderful benefit for Equality Now that was enjoyable not merely for the film, but for the camaraderie of the fans who watched it with me. By the time summer of 08 had come, my husband [nicknamed early on by me as "Wash"] and I were more than casually dating and he invited to take me to our local showing of CSTS that summer. That was the end of June. We both excitedly did what a majority of the FF/Browncoat fans did, and Cosplayed. That first year I went as River Tam and he as one of the "Two by Two/Hands of Blue" agents.
That was the year he also picked up a little brown wristband that simply said, "Can't Stop the Signal".
He also received one other small thing. As we had been dating/courting for a few months then and we knew ahead that we would be attending CSTS together, I had decided to complete my first ever knitting project and make a "Jayne Cobb" style hat. I had no set pattern for it, just a copy of the DVDs and a very understanding pause button. I worked on my evenings, weekends, and lunch breaks to finish the hat in time for the show, which was late June. [Even knowing he was going to CosPlay as a different character]
I will never forget how his face lit up when he saw it, and even more when he realized it was for him. That I had made him a "Cunning Cap".
We both took turns playing with it for a long time, and enjoying a small quasi-tangible link to what was our favourite show. Serenity was the movie we chose to watch on our first date, sitting in a packed living room he shared with 2-3 other roommates. He was my Wash, and I his Zoe.
We even bothered our poor cat to some degree by making her wear the cap.
The hat to us became much more than a love token, or a symbol of our beloved show.
In 2009 my husband was diagnosed after two emergency brain surgeries with a terminal brain cancer.
For him, the quote from the episode featuring the Jayne Cap become almost his daily mantra.
"When you can't run anymore you crawl. When you can't do that... find someone to carry you." [Firefly ep. The Message]
My husband ran. Then for a long time he crawled. When the cancer took more and more of him, it was our friends, and our Browncoat friends who helped to carry us both. To care, to help, to carry.
I understand there is a lot of questions and animosity going around right now bouncing between the FOX owned IP, the 'Helper Monkeys' at ThinkGeek , and the many single person owned shops at Etsy who have been making by hand for years and years Jayne Cobb Cunning Caps to sell to the Browncoats who adore, love, desire one- but for whatever reason were unable to do so themselves.
The way I see it, FOX owned IP is making money off this venture, absolutely. Especially with the surge of "Geek Culture" becoming more acceptable and mainstream public. I know ThinkGeek is making some money as well**, but as they are a business with more than one employee, they do also have to play by legal rules and acquire the "rights" to a knitted cap design to be made to quality specs by another company- Riddle Junction. Not knowing too much copyright law myself, the only real comment about Riddle Junction I can make is that they are a 3rd party given the license by FOX to manufacture the knit caps then sold by ThinkGeek. TG is now in a sad position of angering some of the very fans they felt they were trying to include. Etsy shops that have had to be shut down are suffering- and by no means were these large scale operations bringing in "big bucks"- mostly female owned self-businesses covering costs of materials and shipping for other Browncoats. One such shop run by a wonderful woman named K. (who wishes to remain anonymous in the hopes her shop can be reopened) makes many geek themed items (among them from Doctor Who, Firefly, Battlestar Galactica and more) but did not herself make any of the knit caps or list any on her Etsy page. She only had other items such as bookmarks or buttons on top of her own artwork that she always listed as “inspired by *name of show*”. Yet, because she used keywords relating to the show, her Etsy shop has been suspended. She also disclosed to me that the money she makes off her Etsy store goes to buying groceries.
What I have witnessed over the last few days on the internet is a lot of anger, frustration, sadness, and some hate.
So, who is really "winning" with this? By a monetary standpoint, I'd say FOX is coming out ahead.
From a publicity standpoint, I think many larger issues are now being brought into light- how Intellectual Copyright law is applied, how certain sellers are suffering and if a knit cap with no set pattern (other than a tricolor shading, a pom on top, and ear flaps.... which sounds like any of these hats of the thousands of images in a quick google search) is limited merely in name.
What my hope for the other Browncoats out there is to have a discussion; how can a specific fandom deal with IP/Copyright laws, and what if any, is a responsibility to the fandom by the company that is kept (in part) in business due to the loyalty of fans?
All I personally know is that since my husband passed away last fall there is only one person in the world I would consider passing along my Wash's Jayne cap to- his most adored television show writer; Jane.
FOX may or may not consider that cap part of their IP (since I made it myself from no set or bought pattern, and did not sell it myself) but it means ever so much more to me.
************* EDIT 04-10-2012 11:21AM
As of 11:30am on April 10th, 2013 ThinkGeek announced through their online media they will be donating the profits/proceeds of the Jayne Caps from Riddle Junction to Can’t Stop The Serenity . While I personally think this is a massive step in the right direction, the larger issue of using questionable legal tactics to put (even temporarily) artists and fans out of business is an issue FOX and all other studios should be considering and talking about. As it was the fans, the Browncoats that helped to push the cancelled show into a follow-up movie years later, the power of a fan-base is a strong one. With respect to the original artist’s work, the fans who love and admire the show and who wish for some tangible connection to it are the ones who now suffer. The individual artists who lovingly and with care hand-make these tangible items, most slightly different from another, and most an homage to an item they love, are now the ones who pay a high price.
ThinkGeek heard the fans and responded timely and in a charitable way that some Mudders must approve of, perhaps now we and other Browncoats can petition Etsy that doing the proper thing is human, important, and matters.
EDITED 14:30 FOR CLARITY
Tuesday, April 9, 2013
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.
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.
Thursday, March 7, 2013
ECCC episode IV: A New Hope
There is too much for one, or even two posts from the last week. I will have to do a poor job of just summing it in brief.
I was happy. I was happy this past week, in a way I had not been since 4 years ago when Wash and I took our little trip to Vegas and got married.
Those few days of, and the two days of 'Honeymoon' we had after were my happy moments. The happiness in his face, our joy, and our utter faith and confidence that we (might have some bad and good moments) would be together from that point on, for decades, until we both died in our advanced ages- hopefully together.
That is really the only thing I could ever be mad at him for; he broke that promise. He promised, he swore to me he would let me die first.
I cannot be mad though, as he did not ask for it. He did not ask for cancer, and he did not ask for an early death. He did not ask to die before he ever saw 30 years go by.
So, it was a difference. 4 years without really having a smile, sustained joy. Excitement.
Meeting new friends was more wonderful than I think I'd felt it at any other time in my life. It is like an emotional puzzle with other people as pieces, all coming together to create a feeling of 'completion'.
Seeing some "old" friends was a true joy as well. I had a chance to bond and become much closer to someone Wash was quite fond of, and cared for. Well, he did that with all his friends, true, but I recall him saying many times over how much we all had in common- he expected us to be the type of people to remain close and good friends for our adult lives.
Having had a longer chance to meet and talk with her, his lovely Brother, I have to agree.
It was a feeling so lovely, so happy, so light!, to be able to talk to someone else who knew my Wash BEFORE the cancer. Who knew him as the person/man I had fallen in love with. It was easier to remember the happy times we had BC and to share them, and mostly to laugh.
It was good for me to see his friends and the other people he adored/loved who carry on his passions. Who love certain parts of architecture as he did.
Perhaps that is one reason why ECCC was so comfortable for me; instead of utterly terrifying.
It was a giant center filled with people very much like myself, and even more like my Wash. There was familiarity there. A sense of remembrance; not having ever been to Emerald City ComicCon, the exact layout was not familiar; but the people, the CosPlay, the games, the booths... all images that I recognized.
I went down at one point to the lowest low convention room/basement/lower basement.
Also known as the "Gaming Rooms".
..........
[Insert Table/Card/Dice/LAN gamers growling at yet again, being stereotyped even within the 'geek' Subculture, and thrown in the 'basement']
One person I spoke to suggested, perhaps only partially joking, that the elevator button just have a sticker with "Dungeon" put over the Lower Level/Basement button.
However, I wanted to see if I could find anyone who way playing Warhammer [40K or Fantasy] or a table-top game, since I play a bit myself. Mentally, it felt like Wash would also kick my ass or haunt me if I was at Con and did not check things out.
I am glad I did.
I met a exhibitor there who introduced me to a new Table-top game [Fanticide] which my friends ended up buying for me.
It is a pretty cool game to begin with; but more so, it is compatible with other TT sets. You can buy specific models for the game, of course, but you can also use anything else you already have/own.
For me, this is really the best I can ask for.
I can have a (new) game to play with some of *my* W40K sets and minis that I kept, and the local Games Depot took Wash's old stuff to be donated to their game room, for all others to play with. [Outside of what he Willed for his friends to keep]. I can go down, play on the terrain that Wash and I made, but not the *same* game that we played. It will not have those same memories, which are mostly keeping me from doing any W40K playing myself. It is too hard, when all I can think of is him as a missing partner.
With a new game however, I am excited to learn the new things, to build on the knowledge that Wash gave me by teaching me these kinds of games [slightly different than the D&D stuff I did a LONG time ago].
I'm excited about playing this new game.
I know that Wash would have been pleased beyond words at that.
I'm pleased with myself for feeling I'm doing this more for myself than just for his memory.
Highlights I will address in future posts; meeting specific people/celebrities, panels, Con commentary.
*****************************************************************
I am back home now.
My cats have calmed down, some. Aelphie does not wish to let me out of her sight (like she did as a wee kitten) and if she has the chance, will crawl into my lap.
She is not a lap-cat, either.
Leto has been chirping a lot more, and running around- pretty much acting like a kitten. At 3 years old for a male Maine Coon, technically, he still is a kitten. I am pretty certain he just missed having someone around- all.the.time.
That has been his only life really; as a companion. To Wash, every day for more than the first two years of that cat's life, he was with Wash. Then, me.
I think if Aelphie would tolerate it, he would play with her. She does not, alas.
This has been a very changing week for me. Though I have had a lot of fears, I have learned that I can get through them. Not all the time, or even with 100% consistency, but I can. More so, I tried. I put myself out, I lived as Tashi; and I let myself experience life as Wash would have (wanted).
The past week opened me up to trying again. To See.
There are times still to just be Going Through The Motions, and now I also feel ready to try living again.
That spark in me of love, and life is gone. I know that. He is never coming back. I will never feel that same lifebeat with anyone else.
But I still remain.
My heart still beats.
I still breathe, even when it is hard or I've forgotten how.
My blood still flows, my mind and body; still connected to each other and the world.
Brain Cancer- Glioblastoma Multiforme took my husband, my love, my life, my Wash, our future.
It took from me too, so much I perhaps cannot even list it all.
But I still remain.
I cognate.
I see.
I remain.
I was happy. I was happy this past week, in a way I had not been since 4 years ago when Wash and I took our little trip to Vegas and got married.
Those few days of, and the two days of 'Honeymoon' we had after were my happy moments. The happiness in his face, our joy, and our utter faith and confidence that we (might have some bad and good moments) would be together from that point on, for decades, until we both died in our advanced ages- hopefully together.
That is really the only thing I could ever be mad at him for; he broke that promise. He promised, he swore to me he would let me die first.
I cannot be mad though, as he did not ask for it. He did not ask for cancer, and he did not ask for an early death. He did not ask to die before he ever saw 30 years go by.
So, it was a difference. 4 years without really having a smile, sustained joy. Excitement.
Meeting new friends was more wonderful than I think I'd felt it at any other time in my life. It is like an emotional puzzle with other people as pieces, all coming together to create a feeling of 'completion'.
Seeing some "old" friends was a true joy as well. I had a chance to bond and become much closer to someone Wash was quite fond of, and cared for. Well, he did that with all his friends, true, but I recall him saying many times over how much we all had in common- he expected us to be the type of people to remain close and good friends for our adult lives.
Having had a longer chance to meet and talk with her, his lovely Brother, I have to agree.
It was a feeling so lovely, so happy, so light!, to be able to talk to someone else who knew my Wash BEFORE the cancer. Who knew him as the person/man I had fallen in love with. It was easier to remember the happy times we had BC and to share them, and mostly to laugh.
It was good for me to see his friends and the other people he adored/loved who carry on his passions. Who love certain parts of architecture as he did.
Perhaps that is one reason why ECCC was so comfortable for me; instead of utterly terrifying.
It was a giant center filled with people very much like myself, and even more like my Wash. There was familiarity there. A sense of remembrance; not having ever been to Emerald City ComicCon, the exact layout was not familiar; but the people, the CosPlay, the games, the booths... all images that I recognized.
I went down at one point to the lowest low convention room/basement/lower basement.
Also known as the "Gaming Rooms".
..........
[Insert Table/Card/Dice/LAN gamers growling at yet again, being stereotyped even within the 'geek' Subculture, and thrown in the 'basement']
One person I spoke to suggested, perhaps only partially joking, that the elevator button just have a sticker with "Dungeon" put over the Lower Level/Basement button.
However, I wanted to see if I could find anyone who way playing Warhammer [40K or Fantasy] or a table-top game, since I play a bit myself. Mentally, it felt like Wash would also kick my ass or haunt me if I was at Con and did not check things out.
I am glad I did.
I met a exhibitor there who introduced me to a new Table-top game [Fanticide] which my friends ended up buying for me.
It is a pretty cool game to begin with; but more so, it is compatible with other TT sets. You can buy specific models for the game, of course, but you can also use anything else you already have/own.
For me, this is really the best I can ask for.
I can have a (new) game to play with some of *my* W40K sets and minis that I kept, and the local Games Depot took Wash's old stuff to be donated to their game room, for all others to play with. [Outside of what he Willed for his friends to keep]. I can go down, play on the terrain that Wash and I made, but not the *same* game that we played. It will not have those same memories, which are mostly keeping me from doing any W40K playing myself. It is too hard, when all I can think of is him as a missing partner.
With a new game however, I am excited to learn the new things, to build on the knowledge that Wash gave me by teaching me these kinds of games [slightly different than the D&D stuff I did a LONG time ago].
I'm excited about playing this new game.
I know that Wash would have been pleased beyond words at that.
I'm pleased with myself for feeling I'm doing this more for myself than just for his memory.
Highlights I will address in future posts; meeting specific people/celebrities, panels, Con commentary.
*****************************************************************
I am back home now.
My cats have calmed down, some. Aelphie does not wish to let me out of her sight (like she did as a wee kitten) and if she has the chance, will crawl into my lap.
She is not a lap-cat, either.
Leto has been chirping a lot more, and running around- pretty much acting like a kitten. At 3 years old for a male Maine Coon, technically, he still is a kitten. I am pretty certain he just missed having someone around- all.the.time.
That has been his only life really; as a companion. To Wash, every day for more than the first two years of that cat's life, he was with Wash. Then, me.
I think if Aelphie would tolerate it, he would play with her. She does not, alas.
This has been a very changing week for me. Though I have had a lot of fears, I have learned that I can get through them. Not all the time, or even with 100% consistency, but I can. More so, I tried. I put myself out, I lived as Tashi; and I let myself experience life as Wash would have (wanted).
The past week opened me up to trying again. To See.
There are times still to just be Going Through The Motions, and now I also feel ready to try living again.
That spark in me of love, and life is gone. I know that. He is never coming back. I will never feel that same lifebeat with anyone else.
But I still remain.
My heart still beats.
I still breathe, even when it is hard or I've forgotten how.
My blood still flows, my mind and body; still connected to each other and the world.
Brain Cancer- Glioblastoma Multiforme took my husband, my love, my life, my Wash, our future.
It took from me too, so much I perhaps cannot even list it all.
But I still remain.
I cognate.
I see.
I remain.
Tuesday, January 29, 2013
Streaking
I feel like I am turning into a character from a Stephen King novel.
It is cold and wet outside; the sky covered in clouds.
I am burying myself in blankets and socks. Also, a warm cat or two to snuggle with.
So much writing. I need a new ribbon for my typewriter. [Smith-Corona Corsair Deluxe portable]
Actually, my online writing is done on the computer, the typewriter is just my old, old friend; I think I got mine back in 1990? Thereabouts.
However, the overall mood, the same themes as are in the books I've read until they became cannon, it feels a bit odd to suddenly be living it.
I don't really want to see anyone right now, no company. No distractions.
My downstairs is finally closer to being cleaned and organized in a way my Asperger brain enjoys and can function in. Part of my brain is already doing the same to my upstairs level, but the actual work there is harder; the bedroom is still the last room where there are things left that he moved and touched and put into place.
It is harder to be 'ready' to change that. Ready, ha. As if such a thing could happen in a human life. Rationality can only go so far, even I could only prepare for some of what was to come.
Cleaning the bedroom changes it. Changes it TO a bedroom. It started that way, when we first moved here in 2008. Once he got sick though, it changed. We slept there, yes, but being bed-bound changes so much. The mood of the room was not the same. The items in it. The sounds. The colours. The photos and objects on the walls, even.
It was a place of sickness, even by accident. By proxy.
Now to me, it still holds the strongest memories, and the majority of my reluctance to change it.
Words and thoughts, even lucid dreams rob me of any real 'rest'. My thoughts have become a perpetual motion machine, spinning ever forward and back. Flipping between some social order of "normal" to be outside of my house and in social situations, to hysterical uncontrolled laughter at something that I find funny or he did. I hear his voice less in my head, but a stronger compulsion to 'talk' to his TARDIS urn.
I miss his body, but in strange ways. I just miss how he felt pressed against me. I miss having my head and my ear line up with his heart when we were physically close. I miss kissing the part of his neck where it met his hairline. I miss how his ears were always cold, even in the Arizona summer.
Mostly it comes at night, when I am alone in the bedroom-that-is-not-a-bedroom, sleeping in a bed that feels half empty.
It is different because there was no choice involved. He did not choose cancer. He did not choose to die young. He did not choose to have a tumor remove his memories and change his being.
He only chose how to live.
Busy days help me. Busy days though, cannot keep out the thoughts. The questions.
The world is so open to me, but the person I want to share everything of myself with is gone.
Is it still a desire if there is complete certainty it will never happen?
It is cold and wet outside; the sky covered in clouds.
I am burying myself in blankets and socks. Also, a warm cat or two to snuggle with.
So much writing. I need a new ribbon for my typewriter. [Smith-Corona Corsair Deluxe portable]
Actually, my online writing is done on the computer, the typewriter is just my old, old friend; I think I got mine back in 1990? Thereabouts.
However, the overall mood, the same themes as are in the books I've read until they became cannon, it feels a bit odd to suddenly be living it.
I don't really want to see anyone right now, no company. No distractions.
My downstairs is finally closer to being cleaned and organized in a way my Asperger brain enjoys and can function in. Part of my brain is already doing the same to my upstairs level, but the actual work there is harder; the bedroom is still the last room where there are things left that he moved and touched and put into place.
It is harder to be 'ready' to change that. Ready, ha. As if such a thing could happen in a human life. Rationality can only go so far, even I could only prepare for some of what was to come.
Cleaning the bedroom changes it. Changes it TO a bedroom. It started that way, when we first moved here in 2008. Once he got sick though, it changed. We slept there, yes, but being bed-bound changes so much. The mood of the room was not the same. The items in it. The sounds. The colours. The photos and objects on the walls, even.
It was a place of sickness, even by accident. By proxy.
Now to me, it still holds the strongest memories, and the majority of my reluctance to change it.
Words and thoughts, even lucid dreams rob me of any real 'rest'. My thoughts have become a perpetual motion machine, spinning ever forward and back. Flipping between some social order of "normal" to be outside of my house and in social situations, to hysterical uncontrolled laughter at something that I find funny or he did. I hear his voice less in my head, but a stronger compulsion to 'talk' to his TARDIS urn.
I miss his body, but in strange ways. I just miss how he felt pressed against me. I miss having my head and my ear line up with his heart when we were physically close. I miss kissing the part of his neck where it met his hairline. I miss how his ears were always cold, even in the Arizona summer.
Mostly it comes at night, when I am alone in the bedroom-that-is-not-a-bedroom, sleeping in a bed that feels half empty.
It is different because there was no choice involved. He did not choose cancer. He did not choose to die young. He did not choose to have a tumor remove his memories and change his being.
He only chose how to live.
Busy days help me. Busy days though, cannot keep out the thoughts. The questions.
The world is so open to me, but the person I want to share everything of myself with is gone.
Is it still a desire if there is complete certainty it will never happen?
Thursday, January 17, 2013
Crossposting
Feel free to go and read my latest article over at P-Mag if you would like.
For those who are coming to my blog for the first time; a nice history and summation is to the side in the links, or you can start from my starting place back in 2009.
For those who are here who have been widowed themselves, or lost someone they loved to brain cancer; I truly am sorry for your loss.
I strive to live up to (it was ours first, Wash and I) the title of this blog;
Every day I have to learn how to Hope.
For those who are coming to my blog for the first time; a nice history and summation is to the side in the links, or you can start from my starting place back in 2009.
For those who are here who have been widowed themselves, or lost someone they loved to brain cancer; I truly am sorry for your loss.
I strive to live up to (it was ours first, Wash and I) the title of this blog;
Every day I have to learn how to Hope.
Saturday, December 1, 2012
Brave (2)
I tried to fall back asleep this morning. No go.
It's one week til Wash's memorial.
I'm not doing well.
There are so many things going on all at the same time. I feel I am coming untethered.
I am terrified of trying to write something about him with that level of finality. I was not afford the luxury of denial like others around him were.
This is, certain.
Final.
It breaks what is left of my heart.
The cats keep me company in the bed most nights. Either Aelphie takes her place by my feet, or Leto comes over and sleeps on top of me. The tend to switch off.
I wake up everyday with this sense of "wrong". Something is off. Not as it should be.
I remember how we used to fall asleep together. How we would cuddle. How some nights it would be me holding him until he fell asleep, and a long long time ago, he used to hold me.
I remember the first winter we had together; he was working night-shift and in school. We hardly ever saw each other during the week. Except for 30 minutes in the mornings when he would come home from work, waking me up to the smell of coffee, which he'd always bring me a fresh cup.
He'd climb into bed and for 30 minutes the world did not exist. It was just us. Our time.
I miss the spot I'd kiss behind his ear, right above his neck.
I miss his smell. I miss that so much.
I miss his comfort.
I've had people, strangers and friends tell me how "brave" I've been. I thank them, but I don't understand it at all.
Is it really "brave" when there is only one direction to go? One way to move?
I have to go on, because what else can I really do? I don't see other choices, options.
I am happy to have friends coming in to help me say "goodbye" to him.
I know that lives don't stop. Well, only mine, and to a literal degree, him.
I miss the normalcy.
I miss Family Tuesday Dinners. Those started long before Wash, and it was the one day a week I knew I could see someone who knew my name, who would hug me, where I could just be me.
Those stopped.
I can understand. It's painful. Too busy. Out of town.
I am left though, with this feeling of being attached to nothing. I feel this greater distance with my own family than I have ever known.
Quite like a balloon. I had been tied for so many years, able to float out a bit, and now, un-cut, I am loose. I am going higher and farther than ever before. Than I ever imagined there to be.
The problem though, is the inevitable.
Balloons don't stay up forever. We all know.
Eventually, they pop. They burst, high and in a different place.
More and more I keep wondering why I am still here, in this place. What besides him was keeping me here?
I wonder if this is temporary, or if I have lost hope for Arizona?
I am scared for another reason. Well, many. I've been scared a long time, it's just easier to ignore the fears when there is someone else who needs comfort.
I wish I had known how few choices I would have had, before.
This will by my first Hannukah alone. My parents leave again the day after Wash's service.
At this point, I no longer even see a point in putting up my yearly little tree. I love the lights, but, it feels like I already know I'll be alone at the end of the month.
This is part of it. Everyone moves on. It's been almost 3 months! I mean, sure, he was my husband and the person I was intending to spend my life with, have children with, move with, be happy with, and my best friend. But, no, yeah, under 3 months is fine. Move on. Do we just stop saying his name next year?
I really am upset no one gave me this time-table for "acceptable" grief ahead of time.
I'm still back in the days of Judith Martin, apparently.
I'm guessing since this 'new' timeline for grief is something I'm really not familiar with; being of the impression I could go at my own emotional speed, could someone send me a link?
That last part was a bit sarcastic.
I cried myself to sleep this morning trying so hard to remember if I held him til he fell asleep that Saturday night. I cannot remember. I know I was with him, I was next to him, but I can't even remember if I held him.
I am scared of next week. I'm scared of who might show up. I'm scared my anger towards some people and how they acted towards Wash will not have passed fully if I see them. I'm scared that I cannot yet say that,
"I forgive you for hurting him so much while he was dying."
I was hurt too, to be sure. In a heinous and vicious way. But, people have hated me for a long time. I'm kind of used to it.
I know what was done to him, though.
I know exactly how many nights he cried himself to sleep over this.
I know how many tears, how much pain, and worse, how he could not even understand it. Part of that was the cancer, but a bigger part was just the shock and the pain of who it was coming from.
So much pain and sadness.
How do I say good-bye to my best friend?
The person I loved heart, body, mind, past and future.
I wish, I wish I knew.
It's one week til Wash's memorial.
I'm not doing well.
There are so many things going on all at the same time. I feel I am coming untethered.
I am terrified of trying to write something about him with that level of finality. I was not afford the luxury of denial like others around him were.
This is, certain.
Final.
It breaks what is left of my heart.
The cats keep me company in the bed most nights. Either Aelphie takes her place by my feet, or Leto comes over and sleeps on top of me. The tend to switch off.
I wake up everyday with this sense of "wrong". Something is off. Not as it should be.
I remember how we used to fall asleep together. How we would cuddle. How some nights it would be me holding him until he fell asleep, and a long long time ago, he used to hold me.
I remember the first winter we had together; he was working night-shift and in school. We hardly ever saw each other during the week. Except for 30 minutes in the mornings when he would come home from work, waking me up to the smell of coffee, which he'd always bring me a fresh cup.
He'd climb into bed and for 30 minutes the world did not exist. It was just us. Our time.
I miss the spot I'd kiss behind his ear, right above his neck.
I miss his smell. I miss that so much.
I miss his comfort.
I've had people, strangers and friends tell me how "brave" I've been. I thank them, but I don't understand it at all.
Is it really "brave" when there is only one direction to go? One way to move?
I have to go on, because what else can I really do? I don't see other choices, options.
I am happy to have friends coming in to help me say "goodbye" to him.
I know that lives don't stop. Well, only mine, and to a literal degree, him.
I miss the normalcy.
I miss Family Tuesday Dinners. Those started long before Wash, and it was the one day a week I knew I could see someone who knew my name, who would hug me, where I could just be me.
Those stopped.
I can understand. It's painful. Too busy. Out of town.
I am left though, with this feeling of being attached to nothing. I feel this greater distance with my own family than I have ever known.
Quite like a balloon. I had been tied for so many years, able to float out a bit, and now, un-cut, I am loose. I am going higher and farther than ever before. Than I ever imagined there to be.
The problem though, is the inevitable.
Balloons don't stay up forever. We all know.
Eventually, they pop. They burst, high and in a different place.
More and more I keep wondering why I am still here, in this place. What besides him was keeping me here?
I wonder if this is temporary, or if I have lost hope for Arizona?
I am scared for another reason. Well, many. I've been scared a long time, it's just easier to ignore the fears when there is someone else who needs comfort.
I wish I had known how few choices I would have had, before.
This will by my first Hannukah alone. My parents leave again the day after Wash's service.
At this point, I no longer even see a point in putting up my yearly little tree. I love the lights, but, it feels like I already know I'll be alone at the end of the month.
This is part of it. Everyone moves on. It's been almost 3 months! I mean, sure, he was my husband and the person I was intending to spend my life with, have children with, move with, be happy with, and my best friend. But, no, yeah, under 3 months is fine. Move on. Do we just stop saying his name next year?
I really am upset no one gave me this time-table for "acceptable" grief ahead of time.
I'm still back in the days of Judith Martin, apparently.
I'm guessing since this 'new' timeline for grief is something I'm really not familiar with; being of the impression I could go at my own emotional speed, could someone send me a link?
That last part was a bit sarcastic.
I cried myself to sleep this morning trying so hard to remember if I held him til he fell asleep that Saturday night. I cannot remember. I know I was with him, I was next to him, but I can't even remember if I held him.
I am scared of next week. I'm scared of who might show up. I'm scared my anger towards some people and how they acted towards Wash will not have passed fully if I see them. I'm scared that I cannot yet say that,
"I forgive you for hurting him so much while he was dying."
I was hurt too, to be sure. In a heinous and vicious way. But, people have hated me for a long time. I'm kind of used to it.
I know what was done to him, though.
I know exactly how many nights he cried himself to sleep over this.
I know how many tears, how much pain, and worse, how he could not even understand it. Part of that was the cancer, but a bigger part was just the shock and the pain of who it was coming from.
So much pain and sadness.
How do I say good-bye to my best friend?
The person I loved heart, body, mind, past and future.
I wish, I wish I knew.
Friday, November 16, 2012
Stuck inside my head
Emotionally hard morning.
Completing paperwork where I have to change my status to "widow" and explain what happened.
I had planned to spend the evening/dinner with someone, who had to cancel on me this morning.
My dreams were of Wash. We were together.
Day like today, it is hard to not feel alone.
Day like today, I just want to go back under the covers.
I will write more later.
It is mentally and emotionally difficult for me to go day after day living, with no one around who knows my name. No one to talk to me. No one to visit. No one to share activities with.
In the past two weeks I have seen one frat brother for about an hour. [And she rocks. She usually brings the puppy over to help cheer me.]
I have had one family dinner. Spent maybe 2 or so hours with my mother, more than a week ago before they went on vacation.
I have seen my (local) brother for about 4 hours. Over a week ago.
I had my Physical Therapist shake my hand Tuesday when I completed PT. A "goodbye, you did hard work!" thing.
That's been it for this week.
I suppose I should just shut up and be thankful I even have a few hours every week where someone speaks to me. And knows my name.
That's all a person needs, right?
Yesterday was the funeral and service for another local "Brain Buddy" who had the same cancer as Wash who passed this past.
I was not strong enough to attend.
I'm just depressed and lonely today.
Monday, November 12, 2012
Hard to say
Just a note to my friends;
I do not have the "Science" channel.
I have not seen the Firefly/Browncoat reunion.
I have no plans TO see the reunion special.
I am trying so hard to not keep that in the front of my mind; that Wash (my Wash) missed seeing this by 2 months.
So far, I am failing at that.
It is like trying to run away from the sky... cannot be done. Even if one hides, the sky is still there.
I am aware the special is out there.
It hurts in ways I cannot even begin to describe that Wash was not alive to see this.
It does not feel right, or good, or happy to even try to watch it without him.
I will probably be minimally online until I feel emotionally stronger.
Until I know I can pull up a page without seeing the Cast, without being confronted in my face with another memory I could not have with my Wash.
2 months.
2 months.
Haunting.
Thursday, November 8, 2012
Smiles
Ending my day with a nice note.
I finally found the storage drive that Wash had loaded all our photos on. I have not seen it since early 2009.
So, I found a lot of wonderful photos that we took in 2008 when we first met and got engaged.
Before the cancer.
Very different smiles than at the end of 2009.
It felt like seeing the person I knew and fell in love with all over again. Without actually having him around this time.
It's bittersweet, but right now I have to hold onto every memory.
Remember every smile, every laugh.
Remember how much he said he loved me.
How he said he was happy.
How we planned to spend the rest of our lives.
I go to bed every night hoping to dream of him.
I finally found the storage drive that Wash had loaded all our photos on. I have not seen it since early 2009.
So, I found a lot of wonderful photos that we took in 2008 when we first met and got engaged.
Before the cancer.
Very different smiles than at the end of 2009.
It felt like seeing the person I knew and fell in love with all over again. Without actually having him around this time.
It's bittersweet, but right now I have to hold onto every memory.
Remember every smile, every laugh.
Remember how much he said he loved me.
How he said he was happy.
How we planned to spend the rest of our lives.
I go to bed every night hoping to dream of him.
Friday, October 5, 2012
Leto, being adorable
Had some nightmares again last night, but I was able to control them more.
I woke up feeling better than I have in a while.
Still broke down and sobbed for a bit in the shower this morning.
The cats have been cuddly lately. Super cute. Needy. I'm ok with this, and spoiling them right now. Maybe we all need it.
My friend R* is here from the Pacific North West on work, and then she's spending the weekend with me before she leaves.
We've known each other for years.
She knew Wash.
She's also lost someone close to her to (a different kind) brain cancer.
So, she knows.
Hour by hour, some worse than others, but I just hold on to Hope that somehow it will start to get better, at some point.
I still Hope it will.
I woke up feeling better than I have in a while.
Still broke down and sobbed for a bit in the shower this morning.
The cats have been cuddly lately. Super cute. Needy. I'm ok with this, and spoiling them right now. Maybe we all need it.
My friend R* is here from the Pacific North West on work, and then she's spending the weekend with me before she leaves.
We've known each other for years.
She knew Wash.
She's also lost someone close to her to (a different kind) brain cancer.
So, she knows.
Hour by hour, some worse than others, but I just hold on to Hope that somehow it will start to get better, at some point.
I still Hope it will.
Friday, September 7, 2012
Leto watches "Animal Cops" with me
Heard back first thing from AHCCCS/Insurance Dept. They just need a statement that I hurt myself when I broke my foot, and that it was not the result of an auto accident or work injury (ha!).
I asked if I could write down that it was due to lack of paid help from the same insurance for my husband's care, and the lady was, "Sure, as long as it's true."
AHCCCS, check.
Your move.
Raining this morning. Woke up to phone calls. Back to sleep. Rain. Back to sleep. Cats crying for Nums. Back to sleep.
Wash screaming and running/throwing himself down the stairs; WOAH, OK I AM AWAKE.
He heard the neighbour's door knock and in his brain that was his cue to wake and "Oh I need to go to work!"
He came down the stairs and just started falling over everything.
It's gonna be an ... interesting... day.
Tuesday, September 4, 2012
Open the Box
Wash is having a super bad day.
Needed a LOT of medication this morning.
Did not know where he was for a while, could not remember we were married. He knew/recalled who I was, but I looked "different" to him this morning, which confused him.
The house has changed a little and he was very upset/confused where all his things were today?
Also when he was flipping channels he saw the date and freaked out; it CAN'T be September already! No! It's... the month that comes after January! He knows!
I hate brain cancer.
I hate what it has taken from us both.
Tuesday, August 28, 2012
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.
Saturday, August 25, 2012
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.
Thursday, August 23, 2012
Songs from an American Story
I wake up Wash this morning "Outside!"
"Wash, you can't go outside, it's hot and wet right now. You need to take your pills first."
"No! No wanna go out! The... the... stuff, the outside stuff; our FURNITURE! Is it gone?"
"What? Why would it be gone?"
"It's a YES OR NO ANSWER TASHI, IS OUR BACKYARD STUFF GONE?"
"I don't understand why you think it would be gone...."
"THE STORM. THE STORM TAKES STUFF. DUH, TASHI."
He goes and looks out the window.
"SEE??? You could have just said, 'No'." [everything is EXACTLY where it should be outside]
I just... what?
Waiting for his meds to kick in and the Hospice nurse to arrive.
How's everyone else's morning NOT dealing with brain cancer?
I'm wondering if he thinks it is Summer 2011 when we had our things STOLEN from the backyard?
"Wash, you can't go outside, it's hot and wet right now. You need to take your pills first."
"No! No wanna go out! The... the... stuff, the outside stuff; our FURNITURE! Is it gone?"
"What? Why would it be gone?"
"It's a YES OR NO ANSWER TASHI, IS OUR BACKYARD STUFF GONE?"
"I don't understand why you think it would be gone...."
"THE STORM. THE STORM TAKES STUFF. DUH, TASHI."
He goes and looks out the window.
"SEE??? You could have just said, 'No'." [everything is EXACTLY where it should be outside]
I just... what?
Waiting for his meds to kick in and the Hospice nurse to arrive.
How's everyone else's morning NOT dealing with brain cancer?
For reference, nothing has EVER gone missing during a storm for us. The umbrella gets knocked over, but nothing
goes MISSING. And I took down the umbrella earlier.
I'm wondering if he thinks it is Summer 2011 when we had our things STOLEN from the backyard?
Monday, August 20, 2012
Parental Advisory
Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.
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I did warn you....
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His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.
His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.
He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.
He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.
He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.
I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.
But, he kind of is.
So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.
I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.
He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.
He does not kiss me anymore.
I rarely get hugs. Maybe a couple times a week now.
We are growing more distant as his memories start to fade.
I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.
It's harder to sleep in the same bed.
We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.
I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?
I cried a lot last night, when I was alone downstairs with the kitties.
It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.
It's hard to see him in pain.
It's hard to deal with my own pain, all encompassing.
I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.
I should try to nap today while I have an aide here for a couple hours.
Lately though, my sleep is plagued by bad dreams.
I got 3 hours of sleep last night. Fucking brain cancer.
Sunday, August 19, 2012
Frak Cancer kind of day
Every day when he wakes up it is a new challenge.
Lately he just forgets he has cancer, he is sick, he needs help.
He tries to do things, most of the time just making a bigger mess or destroying what he thinks he is "fixing".
He thinks he has a job. He can't remember what he does though.
He thinks he is starting school soon; he's not.
It takes 30-90 minutes for him to really notice and remember what is different, what is changed now.
To get him to agree to take his medications...
He feels horrible without them, but his brain doesn't always remember he is sick, or that he feels better with meds. It takes time for him to recall and that time is excruciating to wait for him to take his meds and feel better.
Mornings are pretty awful these days.
Friday, August 17, 2012
Updates
Short update, I'm hoping to be back to write this afternoon.
It's rained twice this week! Not enough though to save my garden; only some of my wild Basil is still alive. It's been too hot, too sunny since we lost a neighbour's shade tree, and with my broken feet I have not been able to get out to water it myself.
Sad.
I'm not sure if it's relate to the weather, but Wash's pain has been increasing almost every day now. It really started to get bad about two weeks ago and now it's every hour or two that he needs meds to keep him going.
When he's not in pain, he's able to enjoy reading his LEGO building books (thank you Mark and Dayna) or to build/play with his LEGO sets.
He's been watching some older series too, things he says he can't remember anymore. His short term memory is declining as well. He needs a lot more help with the little daily things, and many many more reminders.
I have to be patient with him, and I'm not always. I could be better.
My foot is still quite sore and bruised from falling again this week. Gorram cats. I don't think I broke anything new; there's no new swelling. I'm getting another x-ray in about two weeks, so unless it gets worse I'll just wait. I'm trying to keep off it as much as I can and DAS BOOT it up if I have to stand or move about.
We had another Eval or two and Wash has gotten to the point where we will have a daily Aide coming over now to help. As of this month (or, the next 2-4 weeks unless it needs to change) we'll have an aide here now daily for 3-4 hours. That will help with some of the daily house needs, at least one meal that someone else can prep for him, and give me some time every single day to rest myself, a novel concept.
Wash also gave the "It's not you, it's me" speech to the (awful) Medical Social Worker. Hopefully we can get a new one (been trying for months) but at the very very least the MSW is aware now that we need someone who can take or return our calls, doesn't take vacation days in the middle of the week or take holidays without telling the clients (us), listens to Wash etc. Tried to be clear that it was not a "you are at fault" situation, but more that the MSW is not meeting Wash's NEEDS, and we need someone who can.
I am hopeful at this point.
The MSW is also working on a grief counselor for Wash too. He really needs to talk to someone, he's so scared of the next phase to come.
Let's see. Our main school in the big tank of danios is down to 2 males. We had 6 one day and one died. I took the dead one out and the next day instead of 4 fish, there were only 2. I never recovered the other bodies. Cannibal fish or a smart wet-pawed Leto, methinks.
However, before the massive die off, I did recover some fry. We have 3 fry in the baby tank now slowly growing into big fish! Can't tell their colours yet, but they will develop as they grow.
My mum helped out a bunch this week and did errands for me, so we have groceries and mail and bills paid. Hurrah! (Step) Dad made Shepherd's pie for Tuesday Dinner night this week; the leftovers might make it to tomorrow even! It's so good it rarely makes it more than a few days before someone in this house eats the leftovers.
Wash and I continue to thank everyone who keeps sending in Lego sets. He plays and builds them. Speaking of thanks, I need to get to work on his birthday thank you notes. Obviously he cannot do them anymore, so it's just another task that falls to me.
I can't even recall what else I wanted to write about. I've been trying to get some of my own rest and recovery in, and doing a lot of watching him and trying to treat his pain. Some days/nights he refuses his medication; sometimes just a couple hours, sometimes longer. He just gets so agitated and then confused and his confusion blocks him from being able to take meds, or calm down.
Brain cancer is pretty fucking awful.
I'll have more later. We're both still here, still alive.
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