Complete the Circle

"Everyone goes through hardships. The challenge of being a person, with compassion, is to pass that help along to the next person who needs it."


Friends, you all have done so much for Wash and myself.
You've helped to keep us in the home he wanted to die in. You are helping me to stay here right now, where I can still feel Wash around me.
You've helped us pay for food, and medicine, and cool air in the 119F heat of summer.

You helped buy clothes for Wash when the cancer changed his body shape, more than once.

Right now, I am living off of your generosity. When Wash died, our small Disability stipend stopped, so it's literally your kindness that keeps me in this home now, helps me to get food, to visit the doctor and get meds to help me cope after Wash's passing.
You are helping me to have the funds to have the memorial for Wash he did want.

I am so thankful for all of you.
I have something else to ask my readers.

I'd like you to smile right now. Chances are most of you have your teeth when you do.
Think of your morning routine, think of waking up and brushing your teeth, brushing them before bed.
Think of every smile you've given before a photo was taken of you. Yes, even the ones where you may have had braces, or a gap, or something in your teeth.

Now, I'd like you to think about my friend Mary O who cannot do that.
Like Wash, she faced cancer. Unlike him she's still around to fight. But it has cost her greatly.
Mary is in her 30s and does not have teeth. She's gone through surgery, and radiation. She has fought.
Medical Care in the US is something I could, and have, written other blog posts about.
But right now, Mary needs some teeth.

So, my friends, I'm asking you to think tomorrow when you brush your teeth.
Think about your $3.00 tube of toothpaste Mary cannot use or buy.
Think about your $2.00 toothbrush she does not have the luxury of being able to use.

I'm asking you, if you can, go to the link. Read her story. Think about your own smile; could you put a value on it? Think about taking the $5.00 you might have spent on your next toothbrush or paste and donating it so Mary can get some teeth.

As always, thank you for helping me continue to learn to Hope for Humanity.

Stirring the pot

Welp.

The last day (ish) has been quite... interesting.

Wash on Tues had a bad health day, he was having some reactions to his med change. I spent quite a few hours with him trying to distract his pain and discomfort. The upside is these are all very short term side effects so he today feels almost back to his 'normal'.

On Tuesday I was informed that AHCCCS Oversight Dept had been made aware of our issue/situation and would be looking into it. I did not get any real human contact information from the communication. I'm hoping this means someone with power is looking into how William "Bob" Jaegers dropped the ball on our case, and lied. I have no problem using this man's real name. If he wanted to work in a job where he did not actually have to work, there are options. But, not doing his job when people's health and lives are directly impacted is unexcuseable.

In slightly better news, Tues I also heard from someone at the Constituent Services dept of the AZ Legislature. She asked for more information to actually look into our case and I'm having my Social Worker from Hospice help me out there. I think he might also appreciate the chance to ask why (as a Hospice SW) he was blown off by our casemanager Bob Jaegers for two weeks.

ALTCS sent a nurse over to ask Wash and myself some questions and spend about 30 minutes evaluating him. (Which, if you read here at all Wash is very good at covering up his issues for even 2 hours at a time. 30 mins gives no real view as to our lives or issues at all.) She said that he does not outright qualify for ALTCS care but every case that does not immediately qualify gets a medical review. Only one doctor on the review needs to say he does need the care and he's approved. For now, I am hopeful.

It will be a few more days before I know anything about Wash's case. Again though, I'm hopeful.

However, I will not be dropping this issue, or trying to pull it from public eye. No one has yet apologized for the wait, or for lying, or the potential cost in Quality of Life to my husband. I know we are not the only family in Arizona to go through this with ALTCS. I'm beginning to believe as well that if they are careless enough to leave evidence of their lies and harmful policies of us around, there is a lot of evidence that they have harmed others too.

This is a Government run insurance company. They are funded, even partly, from tax dollars. They are require to have Oversight, and they are publicly to be held accountable.

To all who have called, emailed, and faxed on our behalf - I truly thank you. I'm truly saddened that I live in a place where it requires this type of effort and luck to get the care my husband qualifies and is entitled to- not just as a taxpayer and former earner, but as a human being. I believe every human is entitled to healthcare and services as a basic human right. Not even those who would deny that care to others, like my husband or myself, can change my mind. Every human.

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.

LAN Parties

The wireless broke on the computer over a year ago and this weekend was just the "too much" point for Wash's (old/spare) 10+ year old LAN cable which we had McGuyver'd into working.

Less internet for us for a little while - at least until I can get down to a store hopefully this week.

It's a nice thing.

I've been spending a lot more time reading and in my garden, both of which I do love, and Wash has been Netflix/Amazon watching his heart out (that wireless at least still works) and trying to make a "paper/pen RPG" which involves tossing loads of sharp little 2" minis from 40K onto the bed for a few hours a time.

We got in two walks yesterday. We went out again around midnight or so, well after the sun was down (it was in the 80s! (F)) when it was starting to get a bit chilly. We refilled our gallon jug with water and did a 'good deed' before we returned home. It's the type of thing that should be and needs to be done, but for some reason it is so odd, and perhaps embarrassing to talk about. I don't feel like a soapbox today though.

Today I have a routine Doctor visit for myself, and a few errands I hope to enlist a friend to help with. In theory, I get Betty the Blazer back to drive on Wed. Living in a "food island" is incredibly tough- We have no grocery stores within walking distance, and none even that would require only one bus- the minimum would be two transfers. We have a CVS with a small selection of canned goods and a Farmer's Market about a block away that does carry some more "grocery" like items and some fresh local produce, but the prices are all about $2-4 higher in cost for everything in there. I think Whole Foods would be cheaper!

My bro took us shopping briefly on Sat, but there are only so many canned foods Wash will eat.

Stop ranting. Be the Change, and do something.

Wash's next MRI is in a week. By Wash cycles, that means this is his "Pre-MRI-Symptoms" or, his "PMS". About a week before his check, he starts to get a lot more depressed, and morose. He's very negative, and sometimes petty and nasty. He's scared, but does not like to admit it, so he expresses as rage. Fun times, fun, times.

So, a mostly slow day here, but I'm trying to focus back to Wash's needs this week (Because I took 'time off' this weekend to enjoy life and time with my husband and brother, and concentrated on my own needs as well. I don't do that.) and trying to be extra loving and supportive of him, since he is facing some nasty tests next week- or at least there is always always always the possibility of bad news.

Ah, New Years! We did manage to get away, my lovely brother came and took us to his home for the weekend. We had loads of fun, talked, watched movies, played with his cat. Thankfully, I did not worry that much about our property as for the first time since I've lived here the city decided to do their Police Checkpoint/HQ across the street from us! So many officers and dogs patrolling we had no illegal parking, no trash left on our street, and as best we can tell, no traffic accidents around us! A safe start to the New Year is always welcome.

I'm slightly nervous about tomorrow, but I am just trying so hard to be hopeful. We could use some good luck or karma about now, and I just truly Hope it is time.

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.

Spirit in the Sky

I want to be clear on something- I love Wash. He's my husband and my best friend. I love him.

That being said, I can sure as hell get angry at the cancer in his head and the effects of trying to kill the cancer and not my Wash.

He had a BAD day on Friday. They are the kind of days that the oncologists and nurses and friends who have gone through it before can warn about, but never really prepare you for. (Thanks Jo & Rose!)

He was just not Wash on Friday.

He was angry. He was forced to confront some issues in his therapy and they came out on me. He can't exactly take his own brain out and yell at it, so I take the brunt. That part sucks. I don't even know really how to describe these days to his friends and family- the close ones that need to know the details. Remember that Wash can pull off "normal" with a hat for a few minutes to most people, but thankfully he has found some comfort with a few friends just being himself.

He was speaking in the same voice, and it was the same body. I can really only describe it as close to how he was acting when the tumor was in his brain- his voice, his body, but not his words or his mind.

MY husband would never say such frakking evil things to me.

Cancer? It has no reservations about saying the most hideous thing and with the sharpest of points. Case in point- I'm trying to help Wash, trying to explain that Friday I was not the enemy but he might need more help than I could give. I have to think it was the cancer or some damage that caused him to say such nasty things to me.

I watched a film last night that was a small companion documentary to a book I read a few months ago on forgiveness and grace. Even knowing that it is not always my husband's WILL that causes him to do something horrid - that still needs some communication of forgiveness to pass between us. We're not just roommates. We're not just best friends. I'm not just a 24/7 nurse- that is my husband slowly being eaten away by cancer in the other room, our relationship greatly impacts his length and quality of life.

We don't go to bed angry. For me the chance of him not waking up tomorrow is always so great I never want to risk sleeping away out of anger again. It really only wastes time we don't have.

What this means though, in reality, is that I have to be willing to forgive ANYTHING by bedtime.

This way of thinking, which is a far cry and change from my own youth, proves challenging to me sometimes. I find myself forgiving Wash with more ease, but feeling more anger at others who I see as wasting my time or energy. It's not really mine, for right now Wash is borrowing it all until he passes. I see things as my time can be wasted, but not his.

It all has to end with letting it go, though.

Friday was a monster named brain cancer living in my husband's skin.

Saturday he seemed to come back. That's the terrible nature of this. I can always always always hope that he will be back to "Wash". Cancer says I really never know who he will be when he wakes.

Every new day I am thankful that he is still with me. 3% make it 18 months. He's at 23 months now. He's a person, now defined by a statistic.

My goal, my challenge, is to make sure that every day he is alive here, now, is better in quality for him than death. Some days I think I fail. Some he falls asleep happy and telling me he loves me.

He's the other half of me. He's my heart. He's the person I would take cancer for. He's the man I'd wait 2000 years for, locked in a box.

How can I stay angry at the person I'd fight hardest for?

Sometimes.... I wish it was not real. A great story, a great myth. I could conquer mountains, Hell, and gods for him. I would have that River Tam shot, saving him, and in the end, a medical CURE would be found.

I remember it's all real instead. There is no magic cure. Fighting won't really save his life. I can't bring him back once he's gone.

There is no "set" ending. There is no happy news or 11th hour reprieve. Real life is so far away from fiction, the little minutiae of living each moment. Real life means now knowing that the "happy ending" only happens in fiction.