Thread by @RachelMcGonagi1

Tonight on Death Thread:

I told the Portland Doc, and then the hospice Doc today, that I'm ready to start hospice now.

An intake team will be coming to the house to do all the intake-y things sometime next week. It's a little up in the air cuz I'm staying on Dobutamine, and hospice needs to take over/work out the contract with the home infusion peeps *before* I sign myself over to their care.

I was able to decide on this now because the amazing folks at my cardiac rehab place know how much I value sweating it up with them, and are making accommodations for me to continue, whilst on hospice, even if it's not strictly kosher. Mostly, I go for the companionship, tho.

My rehab buddy is pleased I get to keep going, and she and I will hopefully liven the workdays of our beneficent caretakers for a long time to come, with our silly antics and gallows humor.

Meanwhile, I will get some much needed support at home, some aid with my ever-growing ToDo List of Doom. The hospice has volunteers, and home care aides, and social workers, and counselors and nurses, and I'm practically giddy in anticipation.

Today in Death Thread:

So....in home care is really spendy, but I desperately want to stay in my home, not the hospital or a (ye gads) a nursing home, in the weeks or months to come. Thus I've created a GoFundMe for anyone who wants to & can contribute:
gofundme.com/f/9qy6x

Tonight on Death Thread:

How do I feel about knowing I have only a limited time left, even though I'm only 51, and should, by rights, have decades left to live?

A friend and I were chatting, and I mentioned the whole weird sense that people give my words more weight, more profundity *because* I'm dying, yet I'm still the same irreverent smartass I was 6 months ago when I thought I had more time.

_I_ haven't changed, I told her.

And if I'm still the same, why should what I say make a different impact? I still giggle over silly videos and hold conversations with my cats and rail against the corruption in government.

I'm still _ME_.

My friend agreed, but also said that others might find it interesting to hear my thoughts on my mortality, and how it's shaped by the I'm-still-young perspective.

So lemme just say this: I've been robbed. Robbed of *decades* of life. Decades I could have had with my husband. With my friends. I'll never see my nieces get married. I'll never see most of my family ever again cuz they're all on the east coast and COVID sucks donkey balls.

I'll never get to do the traveling I wanted to do. I'll never see New Zealand. Or Morocco. Or Kenya or Japan or Belize or....

I won't get a chance to set up our library just how I'd like it, complete with Dewey decimals and a section just for my mom's vinyls.

My husband and I won't have a chance to build the "catio" we wanted, along with the porch swing, where we could sit and watch our cats enjoying themselves, all of us outside and breathing the fresh air in the shade of the apple tree.

I won't get to see Gandalf grow older than his terrible 2s, and see him and Mortimer finally learn to get along. Logan and I are in a head to head race toward the finish line, though--he with renal failure--so I do get to cuddle and baby him as much as humanly possible.

In short, I'm bitter. I'm angry. I'm disappointed. I'm really, really sad.

And I feel....empty. Like a discarded paper bag.

I try hard, every day, to find the good. To find the joyful moments. The little bits of shiny glass amongst the detritus of my hopes and dreams.

Most days, I find them. And I smile, and laugh, and put all the dark foreboding away in a box that shouldn't be opened.

But that box is more full than ever I thought it could be, stuffed to the brim and near to overflowing. And I have to be very careful when I open it, not to let everything pour out and over me, or I'd drown.

A tiny glimpse inside, at 2am on a Monday morning, is more than enough. More than enough and then some.

I'd rather be smiling.

"...When I was a child
I caught a fleeting glimpse
Out of the corner of my eye
I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I have become comfortably numb"

Today on Death Thread:

Got a call from the hospice folks. The contract with home infusion has been worked out, so I can continue with the Dobutamine.

And I set up an intake appointment with them for tomorrow at 11am, which will make hospice official.

Today on Death Thread:

Hospice intake took about 90min. I signed some forms. The Social Worker told me what things are covered, & which aren't. I had to choose ONE doctor to be my primary, the one hospice works with on my covered illness (heart failure.)

I chose Portland Doc.

The other possibility was House--the local cardiologist who took over from WonderBoy--but I haven't actually had an appointment with him yet, although he was my attending in the hospital a couple times.

OToH, I've been seeing Portland Doc for 8mos. now, & I feel I can trust him.

The local cards team has been really good to me, tho, so I feel kind of weird dropping them. Although, if I DO want to see them, I can pay out of pocket for it...and I currently have financial aid for all providers of the Megalopolis Regional Medical Center, including cardiology.

I'll still be able to see my shrinkerator, the wakka wakka doc (who has moved to a new location that's slightly easier to access), my therapist--if she returns from her family emergency in time--and my primary care doc for issues not related to cardiology, like my thyroid.

I'll still get Dobutamine, but the dapagliflozin will not be covered, prolly cuz it's really new AND expensive. But I have a three month supply, so I can continue to take it for a bit before I run out. They wouldn't have covered corlanor either, so it's just as well I stopped it.

The social worker then asked me about me: where I was born, where I went to high school & college, what my various jobs were throughout my life, what my hobbies are. That was fun.

One of the hospice nurses will be doing the dressing change on my Hickman catheter on a weekly basis, so no more infusion team nurse, which is too bad...I really liked her.

They won't be doing lab draws on a weekly basis, either...but only when needed due to symptoms. So, no weekly CBC or Basic Metabolic Panel, to see how my iron, hematocrit or potassium are low or high or juuuust right.

The best part of hospice is that I don't have to fret anymore about "Who do I call? Local cardiologist? Portland specialist? Infusion team? PCP?" when something comes up, cuz it's hospice, every time. Even if I feel it's something to go to the ER for, I still call them first.

But the worst thing is, it's very much more real.

I think I'm still in denial about the dying part, cuz every so often, I really recognize the hard facts, & I get really upset. But then I calm myself down & everything's fine again. Except it isn't.

It's NOT fine.

I'm not fine.

I don't want to die.

And I'm terrified.

One of the things the hospice social worker asked is if I've put any thought into the disposition of my body: where (if anywhere) do I want to be buried, or do I want cremation or whathaveyou.

I actually HAVE put thought into it, and have discussed it a bit with my death doula.

I want to have a green burial, if possible, though that's a tidge more spendy than cremation or aquamation, my other top contender.

A green burial is when you forgo embalming & a "regular" casket in favor of a simple linen or cotton shroud or biodegradable coffin, & you're buried rather more shallowly than you would be in a "normal" cemetery...so that your body will add to the nutrient content of the soil.

People can even plant a tree over you, that your body will feed over time.

You know, by decomposing. Naturally.

My death doula did some research for me on local cemeteries allowing green burials, and the mortuaries that prepare the body, etc. She got me price lists. Looking at about $6-7,000 for a green burial.

Cremation is about 1/2 that.

It may just come down to affordability.

And affordability is a crappy reason to not be buried in the earth, returning dust to dust.

But it is what it is.

If I do decide on cremation or aquamation (look it up; it's very cool) my husband can then scatter my ashes somewhere meaningful to me. The ocean, maybe.

So, yes, I told the Hospice SW, I have given it thought.

I'm just not ready to commit yet. Not ready to face down that particular aspect of my death quite yet.

Do you blame me?

"Then the door was open and the wind appeared
The candles blew then disappeared
The curtains flew then he appeared, saying don't be afraid.."

Tonight on Death Thread:

Yesterday, I got a hospice delivery of "durable medical equipment." An oxygenator, oxygen tank, and a bedside commode, for those times when my BP is piss poor (get it?) and I can't make it all the way to the bathroom...which is only like 10 feet away.

The last few days I've been utterly exhausted...like, sleep-half-the-day-away exhausted. I'm worried that my iron has cratered again--just today got the results from Aug 8th blood tests which showed low hematocrit, hemoglobin and RBC count...but I won't get regular testing now.

And tomorrow I need to call hospice and check whether the shots in my right eye--due to the retinal vein occlusion--are covered or not anymore...since I have one coming up on Thursday.

Is "vision loss due to an eyestroke" considered part of my terminal illness, and thus requiring hospice approval? Or is it separate and thus covered by my insurance due to the "other diagnoses" clause?

What about the CardioMEMS? It's one of the only metrics that can tell if I'm symptomatic...aside from me saying so. If I don't do the readings every morning, no one can use them diagnostically...but they're managed by the local cards team, which I've cut ties with.

So I have to get clarification on the MEMS, too. I think I'll call Portland Doc about the MEMS, too, cuz they'd be the ones getting the reading...if we can turn it over to them, that is.

I'm just flummoxed. Kattywumpus. Brain-scrambled.

And bone-deep exhausted.

Yesterday I called Portland Doc, and he said I could continue with the MEMS if I wanted, or stop doing the readings if I wanted...they would support me either way.

I decided to keep doing it, cuz it's the only "objective" diagnostic I have left.

And this way, Portland Doc will be able to take interventions to mitigate the likely symptoms I'm having--or will soon be having--if my pulmonary artery pressure is rising over a period of days. It keeps them more definitively in the loop.

I also spoke to the hospice nurse--who came to the house yesterday--about the eye shots, and she said there shouldn't be any problem with that being covered as "other doctors, not related to the terminal illness."

So, good. One less thing to worry about.

Speaking of which...

I'm both amazed and humbled by the response to my fundraiser for in home hospice care. More than 2/3 funded already! With much less to worry about now, I have an assessment appointment with a local care agency this afternoon.

Thank you all!
gofundme.com/f/9qy6x

Tonight on Death Thread:

"Don't run away it's only me
Don't be afraid of what you can't see..."

Today on Death Thread:

Thoughts, after being on hospice for...ten days now: liquid oxycodon, for pain relief, is niiiiiiiiiiiiiice; hauling oxygen tanks around is a pain in the áss, but being able to breathe better most everywhere, also niiiice;

the hospice contract with the infusion team changed my bags of dobutamine from 24 hours worth of drugs at a time to 48 hours at a time...so I only change out the bags every other day, which, in case you were wondering, yes, is obnoxiously more difficult to remember to do on time;

the hospice nurse doesn't seem to grok Hickman catheters...or that mine is used 24/7 by a dobutamine infusion, since she wanted to flush it while doing a dressing change, which is completely unnecessary, and somehow she managed to make my skin all itchy again after weeks of calm;

I liked the non-denom chaplain who came out last Tuesday to check in on my "spiritual well-being," for lack of better term, cuz she was funny and kind and understood how fücked up it is that I'm going through this, and that my laughter is often a defense mechanism;

I had a first-and-likely-last appointment with House, the local cardiologist taking over from WonderBoy (last appt bc I chose Portland Doc as primary, for hospice purposes) and he was very kind and supportive and wanted to make sure I knew he was there, no matter what I needed;

I have nasty boob-rash, some of it caused by scratching at the catheter dressing, and some caused by...I don't know what, but it's open sores on my sensitive skin areas, and it fückin hurts, and I need to call hospice today and see what they want to do about it;

I have been sleeping a lot...like a LOT, a lot, & I don't know if it's a combination of the increased seroquel dose at night, cuz I was having trouble sleeping, plus the oxyfast, or what, but I've been taking great big galloping naps during the day, yet still going to bed by 12;

on top of all that, one of my favorite shows, @LuciferNetflix, came out with a new season..but put out only HALF the episodes, ending on a cliffhanger, like, do they expect me to just live til they get their asses in gear and get the second half off the ground?

Ridiculous.

Today on Death Thread:

"I have no God no King or savior
No world beyond the setting sun
I'll give my thanks for one more day here
And go to ground when my time has come..."

Today on Death Thread:

I had some stories I was telling myself...about myself. Somewhere, doubts had crept into my psyche about this whole hospice thing, and was I "too accepting" of it, and maybe I had never fought hard enough for a transplant!

I'm often very mean to me.

Because the stories I tell myself paint me as the villain of the piece, as a horrible, lazy, cowardly heel of a person who just "gave up."

I've told myself variations of this story my entire life.

The doubts I've harbored about my abilities as a writer, my compassion or empathy, my skill as a teacher or nanny or wife or just being a decent person on this planet, they permeated these stories and reinforced what I already felt about me.

But, objectively, if I look at me as an outsider...I know I'm NOT that cowardly, lazy, giving-up person. I AM a decent human, who cares about other people, and who almost always has a smile or kind word for others, even when I'm dying inside.

And I know I fought for me, too.

Anyone who's been following my struggle with congestive heart failure these last almost-two-years knows how hard I've been trying. How I did absolutely *everything* the doctors told me to, to the Nth degree, and nothing worked, nothing got better.

How I pushed for this device or that test. This or that specialist. When we finally got to where I was pretty sure we'd been headed all along--"You Needa Transplant" Country--I fought like a bear w/the social worker, trying to figure out a support system that'd meet her approval.

I failed, obviously. But it wasn't through lack of trying. And when they came at me with a laundry list of yet-more-reasons-it-wouldn't-work, that was when I capitulated.

The support system issue, yes, but also my paralyzed, elevated hemidiaphragm. And my bipolar disorder. And my CNS apnea. And my weight. And the concern that the quality of my life after a transplant would be worse than before one...which would be untenable and very sad, besides.

I didn't come to this realization on my own of course, cuz it's very difficult to see your own shït when you're up to your eyeballs in it. No...I had a meeting with my death doula today, and she was extraordinarily helpful in getting me out of that rut of negative self-talk.

Somewhere in the middle of it all, she led me in a very short (the way I like it) mindfulness meditation to better get my thoughts in order. I was, at that point, a bit of a mess, what with the crying and snotty tears and so forth. Mindfulness was quite helpful.

As she said, there are two ways I can approach this situation: sidestep it, fix the temporary problem as I did today, and move on, or...dive in and really stare down the root cause of the stories I tell about my incompetence and being a "bad person."

Where do they come from?

Death Thread, Continued:

Yesterday was very busy, and today I paid for it. I still have it in my mind that I can do all the things I used to, that I can fill my schedule with appointments and make it out the other side with some energy still in reserve.

This is no longer true.

I started out yesterday with a visit from hospice nurse, who did a dressing change on the Hickman catheter, and while she was setting up, I got a call from one of the local providers wanting to check in and see how I'm doing.

Two meetings in one!

Just 90 minutes later, I had a virtual appointment with Portland Heart Failure Specialist, wherein we discussed why I'm so flonkin tired all the time, but also the wonder of my frequently having a systolic blood pressure in triple digits! Sure, it's only 102 or 104, but still!

I also showed him the latest postcards I'd received as part of the postcard project. A couple really cool ones, and a couple ... really hot ones. I'll upload them soonly, so y'all can see 'em, too.

https://twitter.com/RachelMcGonagi1/status/1261007310593261569?s=20

About 20 minutes after that appointment was over, the hospice social worker arrived, to chat and see how I was doing, if there was anything I needed, anything falling through the cracks.

I mentioned I'd not yet heard from the massage therapist, nor the bereavement specialist. Both had been offered to me two weeks ago, but I hadn't heard anything since. Social Worker Lady apologized and said she'd put in the request again, with additional notation.

The bereavement specialist is of particular importance for my husband, because it takes him a while to get comfortable enough with new people (esp. therapists) to open up. I want him to have her in place and established as a contact and confidant when I die.

(I choose to believe there's not a problem with this plan, even if I still didn't hear from anyone today. I'm sure it's fine.)

Social Worker Lady and I talked about a bunch of other stuff. I introduced her to the Postcard Project. Discussed local options for natural burials.

Talked about cats &how they are teh awesome.

And discussed one of my pure life goals at this juncture: I desperately want to go to the local farmers market and buy some berries and tomatoes and squash and apple cider and a marionberry pie.

She's gonna try an make that happen.

And today I have been so frickin exhausted. I had cardiac rehab and I barely made it there. I was meant to have a hospice volunteer come over this afternoon to help with the niece-booking project, but I was too tired to think, and had to beg off. All I wanna do is sleep.

"If you open your mind for me
You won't rely on open eyes to see
The walls you built within
Come tumbling down, and a new world will begin
Living twice at once you learn
You're safe from pain in the dream domain
A soul set free to fly..."

This (Early) Morning in Death Thread:

Yesterday (Tuesday), I entered the world of Private Caregiverness, thanks to the generosity of over 175 of my awesome friends and relations!

I'm using a local agency, and my first caregiver was here for 3 hours.
gofundme.com/f/9qy6x

She's ... rather younger than I am, but we got along swimmingly. She's got a great sense of humor, didn't seem to mind when I swore like a sailor over constantly dropping things, and we got a few key things accomplished, not least was us just getting to know each other.

If she's going to be working with me/for me, for tge rest of my life, such as it is, we need to get to know each other. And you know me, fam, I'm never one to shy away from an opportunity to tell stories. So I shared The History of Rachel & CHF, Abridged

I may have diverged from the main plot a time or two--so sue me; my thoughts are not always linear--but I hit all the main points. And I found out stuff about her, too.

And we accomplished a few things: got me lunch; sorted through a bunch of mail;

cleared out an area at the head of the bed where there's too much stuff--books* and unsorted or undealt with mail, medications, tubes of hydrocortisone, IcyHot, diclofenac gels and pens* and postcards* and kleenex boxes and and and...

*True, you can never have too many of these.

Next week, we're gonna work on the Postcard Project together. By which I mean, she's going to work on it for a while, and then I will. It's difficult to upload images of the many amazing cards I've received because it should be done from a standing position, and standing is hard.

So she's gonna do the taking-pictures-of-the-postcards thing, and then I can do the add-it-to-my-postcard-thread thing.

It'll be great!

I have ~a dozen new ones to share, plus a bunch of older ones I never got done.

Postcard Project (for the curious):

https://twitter.com/RachelMcGonagi1/status/1261007310593261569?s=20

All in all, a successful beginning to the whole hiring-a-caregiver thing.

I'm just having her come one day a week for a couple hours just now. When things start to turn, and it becomes harder for me to do ADLs (Activities of Daily Living) on my own, I will increase hours & days

Im many families, a sick/dying spouse would be able to rely on their partner to be the full time caregiver, and only ever need outside help on occasion...but my husband has MS, with all the attendant processing problems that comes with it, and he's also an aspie.

So...yeah.

"Here it comes
The unavoidable sun
Of what's just happened
And what's been done
And you know
I don't remember a thing
I don't remember
A thing"

Today on Death Thread:

It was a busy week, hospice and otherwise. The hospice nurse who came on Wednesday to change the dressing on my Hickman catheter had "not changed a dressing in years," she told me, and was obviously clueless about what she was doing.

That was fun.

I invited her to stop, and I'd have the Friday nurse do it instead...and she told me she was going to be the Friday nurse, too. So, I went with it, but was afraid, the whole time as *I walked her through the dressing change* that I was going to end up with a massive infection.

So far, so good...I think. But yesterday, and today, I have been having unexplained chills, and occasional pains in my chest region. Not at the insertion site of the catheter, but right in that area.

I am still afraid.

But it's not constant pain. Nor do I have a fever.

So it's probably fine.

And I think I got the nurse in trouble already. 😬

I...don't do confrontation well. I get it, you wouldn't know that from my big "mouth" on here, but I was growed up with the adage, "You ain't nothing good to say, you ain't say nothing."

I have to get *riled* before I break that training. So, you know I get riled plenty.

So, anyway, I didn't do a confrontation with this nurse. I didn't call hospice and do a confrontation with them about my discomfort. My fear. Cuz, really, when it comes down to it, the last person on the planet I confront others' shortcomings about is on my own behalf.

I did, however, mention it to my death doula on Thursday, how weird it was they'd send out a nurse who wasn't properly trained up in what I needed, and how I was concerned about massive infection and so forth...and she offered to call hospice on my behalf.

So, Friday afternoon, I'm at cardiac rehab (more about which in a sec) and I get a call from the hospice nurse manager, who had heard from the hospice doctor, who'd heard from my doula, and she wanted to know what had happened.

So I told her, about the sterile pack and the gloves on and off and the round anti-bacterial patch thingy she asked if was necessary(!) and the swabs she had me open and the extra mask she put on her face (over her shield) instead of giving it to me, and so forth and so on.

And the nurse manager promised me this wouldn't happen again, that this particular nurse would be properly trained up in dressing changes--as would anyone sent out to me--and that if I EVER felt uncomfortable EVER again, I should say so immediately.

They WILL send someone else.

The Wednesday nurse was a fill-in, not a regular nurse anyway, so she's unlikely to be darkening my door again, but it was good to hear I could just say, "No. No, thanks," and they'd find someone else.

Yesterday, I also finally heard from massage therapist! I shall have my first meeting with her on Tuesday morning. I have fibromyalgia, in addition to heart woes, so massage has always been a dicey proposition, but this therapist works with dying folks, and insists she's gentle.

Also yesterday, FINALLY talked with the hospice grief counselor I'd met with 18months ago, just after being diagnosed with heart kablooieness. She's gonna help guide me and husband--but mostly husband--through the grief process whilst I'm still alive & for the year after I die.

I've mentioned this before, but he really needs someone he feels comfortable with BEFORE he can open up with them, & right now, he doesn't have anyone for that, for feelings stuff, besides me. We tried to get him a regular therapist, & that was a bust.

Hospice is our last hope.

He considers me his "whisperer," in that his mind makes leaps of logic that other folks' don't, and when he says things in conversations, they can often sound like non-sequiturs.

But if you know how he thinks, like I do, you can trace the flow. So I explain, & talk continues.

I told the hospice grief counselor, so she can understand him better.

He's also very literal. He will answer the exact question being asked of him, not what the asker might have intended. This can frustrate some people, but once you know him like I do..it's actually refreshing.

Anyway, grief counselor believes she has a good match for him with a volunteer, who she'll bring on board after she herself meets with both of us, in person, a time or two.

I hope she's right.

My husband will need all the support he can get, and I'm worried for him.

Okay, I find I'm too tired to talk about cardiac rehab and other stuff that happened this week right now, so I'ma nap, and come back to it later.

Have I mentioned lately, though, how much it means to me to have y'all being kind and well wishing me and stuff? You're amazing💜💜💜

This Evening on Death Thread:

So, I just answered a question about "How I Met My Husband," and this tiny paragraph brought up a ton of memories and stories I like to tell of when I first moved to Oregon, and how it was so different here.

https://twitter.com/RachelMcGonagi1/status/1302400057128280064?s=20

I want to record some of these stories, for after I'm gone. So my husband will have them. Or my nieces, if they're interested. But mostly for him. I'm not sure I shouldn't just record myself talking with the photo function on the ipad? Is there something better I could use?

Tonight on Death Thread:

Just one week ago, I had the first of my fundraiser-funded caregivers in for a few hours of caregiving, and it was a rousing success.

She was meant to return today.

But my caregiver is awesome, and so she's also a member of Oregon's National Guard. She got called up to help fight wildfires. Natch.

Thus I received a call a couple hours before she was due to turn up--and while the hospice nurse was already here--to let me know.

And to ask me if I wanted them to find me someone else for today. I said no. I was really tired and wheezy all day--ash inhalation'll do that--and didna feel like meeting yet another new person, since I was meeting the massage therapist for the first time today, too.

Otoh, I did tell them I want to add more hours--at least one more day--to the schedule, so they're gonna call me back in the next coupla days with info on who can fill in for my National Guardswoman while she's gone.

The massage therapy went really well. I told the therapist about my fibromyalgia, and the osteoarthritis, spinal stenosis, bursitis, and the new tear in my left shoulder's rotator cuff, etc., so she was aware of pain issues.

She was very gentle, but deliberate, & it didn't hurt!

I actually felt BETTER afterwards, which was a pleasant surprise.

She's coming back next Thursday.

Today on Death Thread: I've been having occasional pains in my heart area. Not heart attacks, cuz if it was that, my ICD would go off, and I'd know that fer shure (or so they tell me.) But it fücking well FEELS like it, with a tight band of pain, inclusive of my jaw and left arm.

Sometimes, it's eased by pressure. Sometimes by leaning over the side of my bed, like I did when I thought I was having panic attacks, but was really drowning in my own juices. Sometimes, nothing helps but time.

The pain hit me most recently in the wee hours last night.

Pressing my hand into my sternum helped a bit. Not completely, but some.

Dunno is this is more GERD or if it's cardiac related, but it doesn't really matter.

I just hope it's not another bout of pancreatitis. Cuz that would suck donkey balls.

Through a twisty straw.

Today on Death Thread: I just want to point out that, given my druthers, I would never have picked 2020 as the year to kick it.

Between COVID19, wildfires ravaging my state, murder hornets and the insanity of Mad King Donald, 2020 is the absolutely worst year to die.

Tonight on Death Thread, I want to talk a little about the difference between our created families, those who we choose to be close to and gather with, and our families of record...the ones we are born or married into and have no say about the members therein.

I live clear across the country from the family of my birth. I did this by choice when I married my husband, and though I've occasionally wished I had more contact with my brother or nieces, especially now that my parents are gone, I have made a life for myself apart from them.

My husband's birth family, was far closer to us, geographically, than mine. Almost all of them lived in Washington, except his parents, who lived on the eastern side of Oregon until they died a few years ago.

His eldest sister did the holiday dinner sorts of things, and we drove to the Seattle/Tacoma area several times a year to visit and so on, for almost 2 decades.

But we were never *close*.

We were never *real* family.

I know because when I asked her help to get a new heart, she said no. She was too busy taking her mother-in-law to church once a week.

I wrote about this back in March.

https://twitter.com/RachelMcGonagi1/status/1236894205185687552?s=20

On the other hand, I have had literally HUNDREDS of people on here, friends from high school and college I have not seen in 30 years, and members of a writer's group I haven't been able to attend for almost a decade, HUNDREDS of people offering me time, money, postcards, etc.

People who care enough to ask how I'm doing as wildfires rage through my state, making breathing almost impossible (answer: better, now that hospice had a nebulizer sent over.) Or who continue to send me great pictures of amazing places and beautiful things, to lighten my mind.

Or who ask about my kittehs, cuz I'm inordinately fond of them and they always make me happy--unless Gandalf is being all Destructonator-y. Or who retweet my pinned tweet or any of the 80+ charities that thread, cuz there are a lot of worthy causes inside, hint hint hint 😆

This past Wednesday, Husband's sister and her husband drove down to visit for the first time since March.

I wasn't thrilled to have them in my home. I can hold a mighty grudge. (Husband does not. I don't even think he's capable, tbh.)

But at the same time, even though I was devastated *then*, it turned out, her NO was not the deciding factor in whether I got a heart or LVAD. There's also my crushed lung, paralyzed diaphragm, bipolar stuff, & the size of my heart and body.

...of course, she didn't know that.

So I swallowed my grudgeyness and played nicey nice for an hour or 2--one "good" thing about the wildfires, the hazardous air quality has been hell on my stamina, so I begged off with fatigue very soon after they arrived.

If I screamed into my pillow for a while, who's to know?

Cardiac rehab was canceled all week. The volunteer from hospice who was gonna bring me to the farmers market? Got exposed to COVID and is now quarantined for 2 weeks. My brand new caregiver is out fighting fires with National Guard.

My therapist's been gone 7 weeks.

Sometimes..

But the hospice chaplain stopped by for a quick visit this afternoon. I was a bit weepy. Happens when I get super tired and overwhelmed at the same time. But we chatted a few minutes, and I felt a bit better by the time she left, so that was cool.

More later, maybe...

Today on Death Thread: I talked with a volunteer with End of Life Choices Oregon this morning. They will link me to a doctor who will prescribe Death With Dignity medication. My own primary care Doc said, when I asked her, she would be the Consulting Doc.

https://twitter.com/RachelMcGonagi1/status/1283993876856893440?s=20

Today on Death Thread:

"There's a shadow just behind me
Shrouding every breath I take
Making every promise empty
Pointing every finger at me
Waiting like a stalking butler
Who upon the finger rests..."

Today on Death Thread:

I spoke on the phone to the doctor who will be prescribing the medications I'll use (if I choose to) as part of Oregon's Death with Dignity option for the terminally ill. I had to ask using very specific, legal language, to qualify.

Now I have to have Portland Doc send records from the last couple visits, records that will confirm my diagnosis & prognosis. Then I have to speak to the prescribing doctor again--probably via zoom the second time--at least 15 days after the 1st request was made, per Oregon law.

Somewhere in there, I need to fill out the written request for the prescription, which I must sign, and needs to be signed by two witnesses, one of whom *must* not be a family member or in any way a beneficiary of my passing.

That form has to be mailed to the prescribing doctor.

Once the prescribing doctor had gone over the records, spoken with me twice, received the written request...then they can send the prescription to a compounding pharmacy, which can fill it for me right away, or keep it on file for up to a year.

Many folks never fill the 'script.

Apparently, the meds (basically a powder that can be mixed with juice for best ingestion) cost around $650. And almost no insurance companies cover them. Only OHP, which I do not have, alas. So that's a bit spendy. But worth it, if the fit hits the shan and I'm drowning to death.

I want to go quietly. Easily. Sleeping.

Not gasping and wheezing and begging for breath. No thanks.

Anyway.

That was today.

Today in Death Thread: Someone asked how I am feeling today, fer reelz, so......

https://twitter.com/RachelMcGonagi1/status/1306015976971005953?s=20

Today on Death Thread:

The concept...the metaphor, the allegory of "darkness into light" occurs to me, and several ideas coalesce in my mind at once.

One, as always, politics weighs heavily in my consciousness, and we have a chance this Nov. to emerge from a very dark period.

Two, the smoke that has engulfed the Willamette Valley for almost two weeks now may be washed away by rain in the next few days--with the real danger of flash floods, alas--so the literal darkness surrounding my home and making me choke may be lightened.

Three, and perhaps most pertinent to this thread, I have had several clarifying conversations about dying and death and what that's going to look like for me over the next few weeks, or maybe a month or two, and clarity inevitably brings with it, light.

Information is crucial.

"If I lay here
If I just lay here
Would you lie with me and just forget the world?
Forget what we're told
Before we get too old
Show me a garden that's bursting into life
All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

Today on Death Thread

People I will get to hang out with soon*:

+ Maya Angelou
+ Nina Simone
+ PTerry
+ Freddie Mercury
+ My Mom & Dad
...and now
+ Notorious RBG

*Assuming there is an afterlife, and assuming said afterlife is like a cocktail party, but better, cuz I'm invited

Oooo ooooh! Will I get to make a death bed statement??

I better think of a good one.....

https://twitter.com/agearan/status/1307102726271176705?s=20

Between COVID19, #OregonFires, murder hornets, and the deaths of RBG, human decency, and American democracy, I will have it be known that 2020 done kilt me ded.

I want that on my gravestone...if I had one, which I won't because I want a tree instead, but still.

Today on Death Thread:

The basket that someone nice left on my front porch was sent by my guardian angel, the social worker from the local hospital who's been looking out for me for the last year and a half.

She asked if I'd received it, and I gushed!

https://twitter.com/RachelMcGonagi1/status/1300862096356208642?s=20

We've talked about once a week while my regular therapist is gone. It's been eight weeks since I last saw her. It wouldn't be nearly as awful, I think, that she was gone, if I had any inkling at all about when she was returning.

If I'll ever even see her again.

See, the thing is...the Oregon wildfires were bad for breathing for your average oxygen dependent critter, but for someone like me with a weak heart and already compromised lungs, well.

Two weeks of breathing particulates and potentially toxic smoke shaved off some time I think.

I have an appointment with Portland Doc this coming week, but this past Thursday, I met with hospice Doc, to discuss the "final stages," the efficacy of Aided Death meds when in conjunction with Dobutamine, and when I thought I might pull that lever.

And I feel it, too, fam.

We're talking weeks at this point. MAYBE a month or two.

I'm no more ready to leave than you are to see me go, so let's not hear any of that, hmm?

Just...show me your fur babies, please. I need goodness and love and fuzzy faces. And maybe a blep, iffin you got one. 🐶💜😻

My Currently Full Plate:

1. Set up husband w/new grief counselor. Act as go-between until husband feels comfortable w/counselor on his own. First phone call was Friday;

2. Also Friday: husband's yearly physical, to which I brought him, took notes, discussed meds &sitch w/doc;

3. Transfer husband's income cap trust to one of his nephews, so he can stay on his Medicaid plan, and still receive the disability income that he does;

4. Set up husband's long-term caregiver as his health care proxy, so she will be able to go to his appts. like I did Friday;

5. Finish ppwk for Oregon's Death with Dignity Act compliance, including written request for prescription, signed by two witnesses;

6. Work on consolidating files in my tablet to make them easily found/accessible to my husband/his long-term caregiver/my brother after I die;

7. Decide once and for all, what I want done with my body, visit the place it will go--if possible given that 2020 is objectively awful about letting me visit places--and prepay any costs, so my husband doesn't have to worry about any of it;

8. Finish list of folks to be notified in the event of my demise. It's mostly older, HS/college peeps, but also a few twitterfrens, because I love you, and I know you want to know, you know? But if you REALLY REALLY want to be added to such a list, no guarantees, but send a DM;

9. Start thinning out my "stuff." JEEEEEZUS, I have a lotta stuff. So. Much. Stuff. And mostly, my husband is not going to want to go through it, nor will even grok what he's looking at half the time.

Very, very much donatable stuff will be donated. Oh, yes;

10. Still trying to score a handyman of some kind to come & hang a freaking replacement door I got for one of our closets, and a replacement toilet seat, and set up the gorram generator we bought 2 years ago and still haven't set up, and fix the back screen door, and and and;

11. Get "important papers"--our passports, deed to the car, our marriage certificate, birth certificates, most recent tax filings, property taxes, current year's Social Security statements--all put together in one place, so when that file is lost, they're all gone.😈 JK

12. In addition to my husband, hold my brother's hand through my dying process, cuz we lost our mom only 2 years ago, dad just 5, & he's lost his two best friends also in that time. One to cancer, one to Florida. He's prone to the family curse of depression/bipolar. He's fragile.

13. Figure out scheduling for husband's future care, since his main caregiver can't do all his hours anymore, and we need someone to do one additional day. I was able to hire someone for that job. She's now on maternity leave. The process of hiring temp replacements is horrific;

14- infinity. Frankly, there are dozens, scores, hundreds of others tasks, small and large, minor and "will take 6 phone calls plus 3 emails and a followup" that my heaped up plate continues to grow to accommodate.

I can never die, cuz I'll never be finished w/my To Do List.

Today on Death Thread: I ponder whether my vote will count if I vote early and drop off my duly marked ballot, but then I die before Election Day...which is a definite possibility.

Whether your vote counts in this sitch depends entirely on what state you live in.

In Oregon, it does. HOORAY!

In South Dakota, if you vote absentee, then kick it b4 Election Day, your vote is null & void. How's that for a kick when you're already down?
cbsnews.com/news/should-vo…

Good thing for me I live in Oregon...but seriously, this is one of those election rules that needs to be the same across the country.

No one should be deprived of their last vote just because they live in a backwards-facing state.

If the person was eligible to vote the day they voted, that should be enough to count their ballot with everyone else's, across the board.

I hope I don't die before the election...but if I do, I can still be Dead Gal Voting, and that's okay.

Today on Death Thread...

Lotsa stuff going on. Not sure how much energy I have, so I'll go as far as I can, and leave what I don't get to for another time.

Yesterday, I got to go to the farmers market! It was EXCELLENT! I got tomatoes, plums, watermelon, gold potatoes, peaches,

strawberries (that I didn't think were even in season anymore!), sugar snap peas, cheeeese curds, some german pastries (from a brandy-new bakery, and I chatted with the baker for a few minutes about all the YUMMY wears he had to sell), more tomatoes, pears, and a

bacon and cheese covered pretzel (from the German bakery) for my husband, as he is very fond of bacon.

I might have gone a little produce-crazy.

Have I mentioned it's been TWO YEARS since I've been to the farmers market? That I have dreamed of and yearned to return for months?

Wednesday's market has always been smaller than the Saturday market, but that was probably to the good, cuz I imagine I might've gotten even more overwhelmed by the whole thing iffin I'd gone on a Saturday.

Yesterday's jaunt was PERFECT.

A volunteer from hospice met me at the far end of the market, and we used my husband's transport wheelchair. He pushed me through the market, up one side and down the other, back to the cars.

I'd brought my reusable shopping bags, into which the goods went one by one.

I was tired by the time I got home. Exhausted, really. But the strawberries are so sweet. And the cherry tomatoes are juicier than anything you'll get in the store. You can't even find peaches or plums right now....

So good.

Elsewhere, I had an...interaction with the records office for Portland Doctor yesterday because it'd been 10 days since I emailed the request for records to be sent from them to the Prescribing Doc for Death with Dignity, and Prescribing Doc had seen neither hide nor hair.

In the end....I had to ask for the supervisor, fam. 😬

I HATE doing that. But the guy I was talking to was telling me it would be even more weeks wait, and--yes, I did it--I played the "I'm dying" card, which did not move him one iota.

The supervisor, otoh, was more sympathetic, especially when I told her what, exactly, I needed the records for. She was able to help me right away, and told me she'd have them faxed this morning.

I have not yet heard from Prescribing Doc about whether she's received them, but 🤷🏻‍♀️

Let's see....my brother is supposed to be arriving tomorrow, but he doesn't seem to grok how things work out here.

In order to fly non-stop from Boston, he said, he was gonna have to fly into SeaTac...and then he thought he'd "thumb it" down to my place. A 5-6 hour drive.

I said, yeah..no.

1. I am not letting you in my house after you have comingled your germs with some stranger's germs for 5 hours, no way, no how.

2. Nobody on the west coast is gonna pick up your germy áss anyway during a pandemic. Are you trying to kill us?

Rent a bloody car, ffs, I told him. And then you can stop at a pot shop on the way to my house and stock up. (Massachusetts isn't as free thinking as Oregon; there are two shops within a half mile of my house. One is very reasonably priced.)

This was deemed acceptable by him.

Still trying to work out: cremation or green burial?

There are a coupla cemeteries in my town that do green or natural burials, and I'm trying to get more info, with the hopes of visiting, to see what they actually look like. One wants their final resting place to be...nice.

Trying to add service time to the cell phone, started last Thursday and the saga still isn't over a week later, what with website glitches from the service provider, call reps who really didn't follow directions--and added unnecessary and unwanted charges to my bill--and this is

exactly the sort of thing I worry about husband not being able to do when I'm gone. Was only cuz I checked the bank account for a completely unrelated reason & noticed I'd been overcharged by the cell phone company that I knew they ratfücked me and called them back.

I hate this.

On Monday night, I was wakened from sound sleep around 3 or 3:30 by pain. Bad pain. Bad chest pain. And not just chest pain, but left arm, shoulder, neck, jaw, back.

For an hour.

Pain that, except that I have an ICD that did not fire, I would have thought was a heart attack.

The pain finally went away after a couple doses of liquid oxy, but, you know....

FUN TIMES.

Husband's regular caregiver and close friend lost one of her fur babies yesterday, so she was out sick yesterday & today, then MY GoFundedly funded caregiver called out sick today, & can I just say I would love to call out sick on the whole BEING SICK thing, cuz that would rock.

All right, done complaining.

Upside of no one being here to help us today? Husband and I are ordering dinner via delivery from...I don't know where yet, but I'm sure it will be tasty and we will share food together and it will be good.

'Til later, my friends. 💜💜💜

Tonight on Death Thread: just finished up a zoom call with two of my nieces (children of the knuckleheaded brother who's flying here tomorrow) and it was the most fun I've had in a long, long time. These girls (aged 16 & 14) are smart, funny, and I am proud to be their auntie.

I told them I was sorry we hadn't really had the chance to get to know each other much before, but I want to cram as much knowing as I can into the time I have left. "That's so," I quipped, "you'll miss me more when I die."

Tryna keep it light. 😜

There was LOTS of gallows humor--nothing like teens in a pandemic to throw around the black humor ball like pros--and I loved it. I asked about stuff in their lives, too, obviously--I am not quite so vain as all that--and boy, these kids are very clued in and pissed off.

And also, we finished up with a conversation about possums, and how there's no emoji for them, and Middle niece, the 16yr old, asked, "How am I supposed to accurately emojify my emotions with no possum!!!???" and if for no other reason than that she verbified "emoji," I 💜💜 her.

Gratuitous Gandalfian Gallery: he and me, tonight

(Oops)Tonight on Death Thread: TW, some serious shït

Brother flew back to Mass. early this afternoon, which meant he had to leave the Central Valley of Oregon, to drive to Seattle, rather early this morning.

I saw him off, promptly collapsed back in bed, thoroughly exhausted.

I was especially thoroughly exhausted because on Friday-going-into-Saturday, the catheter that delivers dobutamine from my pump 24/7 wriggled or slithered or jiggled its way out of my chest.

I called hospice. There was the possibility I might die in the next couple hours.

Reason is the fork in the road when I stop using dobutamine. Either my heart arrests PDQ, and I die in hours after ceasing the drug that's been forcing it to pump harder Harder HARDER for the last 6 months....or, I get the slower, lingering death, which I'm not keen on.

I did not die.

Instead, the shortness of breath is a lot worse. The coughing is pretty constant (except when I've medicated it into oblivion) and the fatigue is truly indefatigable (see what I did there? 🤣 )

Pain is also pretty constant, but whatever.

Back to late Friday/early Saturday, I spent the next few hours weighing pros and cons of spending the weekend in the hospital getting hooked up to an IV of dobutamine until they could replace the catheter today.

Decided ag'in it.

Cuz, well, my brother was here, and I didn't know if he could even visit me at all in the hospital, due to frickin COVID regulations.

(Have I mentioned how much 2020 sucks donkey balls as a year to die in? It really, really does.)

The hospice weekend nurse came over twice yesterday, & twice Saturday, to make sure everything was okay. Put a new dressing on the insertion-site-sans-catheter to keep it clean.

Today, my regular nurse talked to me about whether we'd start up the pump again. Re-implant the cath.

She said Hospice Doc talked with Portland Doc, and they decided against recommending re-implantation of the catheter.

IOW: no more dobutamine for me.

Reason being, previous titrations upwards led to VTach, a number of episodes that I didn't even feel.

That's no good.

Now that we're turning off the dobutamine a month or two early, other elements of death planning have become more emergent.

1. Must get my ICD turned off--no one wants to see a bouncy corpse

2. I have an appointment tomorrow with the local funeral home that does green burials

Cuz, the thing is, even though I didn't die right away after dobutamine withdrawal (that is, within hours) the hospice folks--and with Portland Doc backing then up--are fairly sure I've maybe got days, or possibly a couple weeks left on this green(ish) earth.

I am not pleased.

I thought I had to the end of the year. Then, after the fires, I at least thought I had til election day.

Now I just want to get all of husband's Issues & Medical Stuff & Trusts & Case Management & Everything taken care of. Dunno if I have enough time now. 😬

I'm wicked tired. More tomorrow, if I'm up for it.

Today on Death Thread:

Okay, obviously, I was not "up for it" on the 29th. Or the 30th, 1st, 2nd or 3rd.

My apologies. I will try to explain, but it may be disjoined, and they may be egregious errorors in spelling because apparently the spelling portion of my bria n snt get

getting enough ogygen, so there that's. Anyway. I'm be-drugged most of the time because of the coughing most of the time, and the breathlessness most of the time. I'm like, like, never hungry, but pretty thirsty.

I have a catheter in--not a cool one like for dobutamine--but a stuipd one in, like for urine. Of course this keeps me from wetting myself 15 times a day, so thats nice, but it's uncomfortable, and I still feel like I have "to go." What am I sposed to do with that sensation, huh?

If somewhere around NOW, you're getting a feeling of TMI, man, T M I !

I must invite you to look through the entirety of my personal medical woes posts, going back at least 2 years, and then, invivte you to faff off, in the nicest way possible, because I'm nothing if not a Lady.

Anyway, other stuff that happened, in no particular ofder:

+ house was invaded again by sister-in-law and her husband and the sun who will be taking over husband's income cap trust. HE came with his wife &3 kids.
+an entire day was spent badgering me about how the trust works,

and I still don't think they understand the basics. They're making it out to be far more complicated thsn it needS to be. Maybe i'll have them sit down with Jodi, the social worker i've worked with, and she can answer their questions.

+Developed a list of those I want by my bedside when I officially kick it, if they can

+List of those who need to/want to be notified at the time of my demise...now, if you are on this list, and I die at 2am, you will not get a call until later in the morning, capiche?

+apparently gave power of attorney for my husband to his nephew. I wasn't part of that discussionion, just signatures they were doing afterwards...which they didn't need mine. So...not sure wth happened there.

+they want me to sign my car over to my husband. I think not good.

+did have visits from people I like: my oldest friend in Corvallis, and we laughed at the absurdity of it all, and then cried at the absurdity of it all.
:my best ex-neighbor friend, who's driven me to Portland over and over and listened to me kvetch afterwards, and I love him.

+I have slept A LOT. Like A LOT!

+I am having a reallu harf time typinh senentced wit my fingers. It's not thst I dont know rhat i want yo type, it's just that thay dony come out right, like i vacent mwkr thkmgo yo yhe roght spsve.

👆That's what shît looks like before cleanup.

Hypoxia is for crap. I don't recommend it. In addition to the expressive aphasia, I've been getting more & more confused, too, which has been AWESOME, lemme tell you.

Nothing quite like staring at a black page, thinking, "was I meant to write something? Draw? Make an airplaine?"

Tonight on Death Thread: The Time Has Come To Say Goodbye.

I have decided on Saturday as the day which I will die with dignity, as is my right in the state of Oregon.

Prior to my death, there will be music, stories, good food, laughter and reminiscences galore. No abstentions.

For those unable to get to Oregon--or who are practicing their own stricter social-distance guidelines--you are welcome to join in remotely, on google meet up, time tbd.

But it will be on Saturday.