Sunday, April 24, 2011
Real quick; for 4/25 if anyone wants to get Wash (or maybe me too) this shirt http://on.fb.me/ijVqws that would be a lovely Easter/Anytime gift for him. I guess that's a good part of cancer; it's always an occasion for a gift, right?
Also, my love for Patton Oswalt has been long and hard. Wash and I listened to "Werewolves and Lolipops" on our Honeymoon trip....
He's in town/state. I would shit my pants if we could see him.
I know I have asked a lot of you my dear readers; even just to keep coming back and hearing our story. Perhaps the internet has some more kindness in it- some ability to connect humans to bring out the best of our humanity- and could get us tickets to his Mesa, AZ show. Hell, I'd drive us to Tucson to see him if needed.
As you wake Monday morning, perhaps you might be inspired to help give something meaningful and precious to us.
This blog is called "Learning to Hope" for a reason.
Cancer takes it all.
Hope is all we have left.
Heading off with Wash today to spend Easter Sunday with a friend and her family. I'm excited for this, apparently her parents have known Wash for years as well but through various situations and reasons I've never met the friends' parents.
... We have a running joke that they don't really believe that I exist- Wash just made me up (as they've never met me in person).
I am excited to validate my existence today.
I will avoid speaking of any bad news for this post/today. Yes, there always is some.
The kitties have been getting along so much better lately. They've taken to trying to groom each other a bit and they have adjusted to being able to sleep on the bed together with us. I think since we got back from our holiday I've been feeling closer to the living things around me; I really feel more like a "family" now- I'm not sure what changed except perhaps myself.
I've been mostly avoiding the news lately; stress is still a trigger for my asthma and now I do have an honest worry that I'll get a panic attack over something which leads to an asthma attack then maybe a heart attack and death for Tashi. I think that's my biggest person physical fear right now.
Wash has been mostly ok. Physically right now he just deals mostly with severe fatigue issues and food issues; he can stay awake for maybe 6 hours if he is not active, if he is up and moving he can keep it for maybe 2-3 hours. We still try to get out of the house a few times a day when he feels up to it. It's been about 5 months without the chemo now so it seems this level for him will probably be permanent.
Right now I'm worrying a lot about money again; my recent medical issues, applications for Wash, rising co-pays and new meds, and then there's the need for A/C in my house- I use fans as best I can but I have to keep the temp low and steady as Wash literally cannot regulate his own body temp. It's a permanent effect from his brain surgery and where he had to have his radiation from the IMRT. He feels "cold" even when he has a fever and is sweating, he cannot tell when he is over-heating.
This is part of my biggest worry- transportation. My/our car is a 1996 Chevy Blazer. On the trip back up from SteamCon the car (Betty) decided that was the time when the Air/Heat/AC would die. So there's that to fix at who knows what cost and there's an old axle issue that needs to be addressed as well, brakes.... you get the idea. I've done the best I can with maintenance but she is an old SUV that takes a lot of gas and a lot of money we don't have to fix. I have no idea what I would do without transportation for him; his hospital is a 20-30 min drive away and we don't even have a full grocery store within walking distance. Not to mention the fact that it is over 100F outside for like, 9 months of the year.
I haven't really talked to Wash about this much. I am not sure what he really thinks/knows/remembers about it. But it is a stress on me and I don't know what to do. Any of my readers know of someone who has a (used/new) working, reliable, and air conditioned 4 door car they might want to give to the caregiver of a 26 year old with brain cancer so he can be safely transported? Any other ideas?
We've mostly been talking, reading, watching movies, and trying to think of a positive or hopeful future where we can have certain pieces of happiness. I think we both know right now it's really just fantasy, but it is one we can share in. When the options are to live always in our lives... fantasy holds a nice calling. Wash likes his movies and certain books for it. I like movies, books, music, and time in the shower to either lose myself or just to pretend of a better "Happily Ever After" ending.
Those don't always exist even in movies anymore though.
And it certainly will not be the end to our story. Ours is a tragedy moving slowly towards the end.
Today though is a nice day to try again, a clean slate, a new chance to come to something better. So I still hope, even in my most down times.
To those who celebrate, Dear Readers Happy Easter.
Tuesday, April 19, 2011
So back to my internist yesterday for more asthma issues.
Got a different type of breathing/nebulizing treatment there and a (new!) inhaler (3 so far) to try on top of my oral corticosteroids.
I only woke up 3 times in the night last night with breathing troubles and it is easier for me today. It feels close to if I was wearing a boned corset for about 4-5 days straight. (I have maxed out at almost 24 hours once. Not that comfortable.) My posture was/has changed, my breathing rate, and according to my doc's my blood pressure has been effected by this too.
Need to relax, keep my muscles working, and not give myself a heart-attack.
So! Who wants to help me with my new stress of paying for all my emergency doc visits and new meds? Frakkin' insurance companies. Thankfully my PCP has loaded me up with samples for now, but gorram a 10 day dose of one of my inhalers is around $500!!!!! (That would be the new one of course)
Money troubles is for another day. Today we rest and rejoice over Passover and that I have finally gotten Wash to watch the 1996 Dr Who movie and meet the 7th (8th) Doctor.
Aside from that, still have mountains of laundry to do, loads of weeds to clear from the last storm out back, and a "Welcome Home" packet for two of my friends; one is coming back from teaching across the country the other is coming back after defending our country across the world.
; Pic is Wash doing his best to keep me smiling and not be so scared yesterday when I couldn't breathe.
Thank you as well to all you my Dear Readers who have sent me Good Well messages. I really do appreciate them so much. <3
Monday, April 18, 2011
Friday, April 15, 2011
Been quiet here you say?
I was very stupid this week and nearly put myself into the hospital or worse.
My asthma started to get out of control about 3 days ago. I decided to play my favourite heath game "Wait and see if it kills me". Wash was there for me from the beginning and tried to get me t0 see my doc early on. I said no.
So, it got so bad that I was barely breathing and my lungs were quite weak. My heart was stressed for at least two days from this as well. I could not even cough, my lungs were that tired.
Wash called and got my into my doc's ASAP. I was given several nebulizing treatments. And a shot in the ass. I kinda feel I totally deserve it. I know a lot of medical professionals read my blog and yes, I'm well aware how dangerous I let things get. I wish I knew how to really care more about my own health.
My wonderful doc gave me a fairly kind lecture on my asthma and how serious it is. I recall her words as being, "People die from asthma like this. If you let it go and get bad, sometimes that is how people go to sleep and they just cannot breathe and die. Next time you cannot wait, you need to call us or the Emergency."
I feel correctly reprimanded over this. Lesson hard learned.
I'm going back to bed rest, I will fill my Dear Readers in on our other adventures from this week.
Sunday, April 10, 2011
Thought I would quickly share what so far is my favourite photo from our Honeymoon;
We have many many more but I'm quite tired from a near 8 hour drive today to get them all sorted and such.
I shall leave with the nice feeling of a week of silence, love, and smiles.
Thursday, April 7, 2011
Saturday, April 2, 2011
Mostly buoyed today by good news. Despite my night of pain and vomiting at 2am I felt ok enough to tackle the issues and chores of today.
Pharmacy trip. Grocery shopping. More shopping. More driving to grab things for the trip. Long and hot day for us both- though Wash stayed home for most of it and concentrated his work here. My mum has really been helpful and wonderful with this trip/honeymoon. She is really committed to doing what she can to help me and us relax. That takes a lot on everyone's end.
So far also having to fight with insurance on some stupid issues. I love our local Walgreens pharmacy though because they actually know us and do their best. So, they knew ahead of time we were planning on going away (I'm there every week) and when today the insurance threw a fit over paying for one of Wash's meds they did the best thing they could and got him a 10 day supply. Should be enough to last until it is cleared up; however heads up taxpayers of AZ, you just paid 3 times the amount for his meds than should be. Instead of taking one 60mg pill for 30 days AHCCCS would rather pay for him to take 3 (three) 20mg pills every day and having the script filled at full cost of the old one 3 times per month. I have no idea why this is deemed necessary.
Aside from that when one of my medications wasn't in stock they had it overnighted so it would be here this weekend before we left.
We're not numbers there. We're not even 'patients' really. I truly feel they see us as people and it is wonderful and feels validating on a human level.
Though there is still packing to do, trash to take out, the bed to make, catbox cleaned one last time, and bills set to be paid... most of the hard part of waiting is over. This will happen and I can hope with all I have learned to love what happens and not be scared of ... whatever irrational thing my brain comes up with.
It will be hard to leave my kitties. I haven't left Leto for more than two days so far and I've been gone from Aelphie 5 days as a max. When Wash was in the hospital all that time Aelphie actually got depressed.
I am hoping the cats/house sitters we have will alleviate some of that. That, and they have each other. It's just me to worry about and how I deal without my ... emotional outlet. I am thankful to have found that Aelphie is really one of the best things and ways I can calm down after or during an Aspie meltdown. She pretty much seems to know when it happens and just comes to me and sits or purrs or just looks at me and it helps.
A long week without her.
... Also a long week with no cat hair on everything, hissing, hairballs, litter smells, or a raspy tongue at 4:30am. I will just have to go with it and deal as everything comes up.
We also had another couple drop by to see us tonight before we left. Happily for me she brought the "babeh"; he is chubby and cute and an adorable healthy 2 month old. We held him and chatted for a while whilst Wash and her man J talked Warhammer 40K and movies. Starting to see why we like these guys? Being able to share and connect with people your own age is an amazing thing and really something I had mostly forgotten. They've only known Wash as he is, not like some friends who have had to see the changes from brain cancer. We end up having different conversations than some of our other friends who have known us years. Yet I find both types of friendship very affable to me, recalling that I do have facets and different things to talk on and hear about.
All being said, here is my optimism; it will be a wonderful time between us both - a gift for just us as soul mates.
We will see beautiful outdoors. Steam trains. Geological wonders and beauties. Red Rocks. Some of our favourite friends and tasty, warm pubs.
And I plan (99% probability) on us having a Jacuzzi tub in our cabin so that right there is heaven for me. I do realize that I cannot spend the entire week in the tub, nor will I, but having that option is just frakking amazing for me.
Oh and a dishwasher in our kitchen too.
I Hope for a week free from cancer reminders and problems. Where we can be what we are- a mid twenties couple that is on their first real Honeymoon/holiday away with just each other. For that week the world does not have to exist past the man I love.
I Hope that this week we both truly live.