Spiraled notebook paper torn out:
*Sat 12 days ago last bowel movement 1/29
Revlen antiametics / other nausea meds avail
coat throat
__________________________________________
cancer answer
CT scan not show clear growth, but "leakage" in abdomen indicates cancer
^^^^^^^ word?
coat on upper GI near stomach
Fri: chemo plan for weekend
If nourishment not staying down, tube to intestines.
hyperalimentation
froz. pudding orange magic cup
milkshake van.
__________________________________________
cl. undies - tees
3-4 diapers/day
Tues - chemo last 2/1
nutrition -
Wed 2/9 - froz pudd orange magic cup; milkshake van, ? diarrhea all night (6x); Dr M 4:30pm
Thurs 2/10 - no mom; bread apple AM; vomit @ night
when I left: mac & chz, mash pots; some diarrhea Dr M 5pm
Fri 2/11 - no mom; 1 nutrition AM @ bfast;
Adv Dir Pwr Attrny updated, on file
- bfast:scr egg, apples, white toast, 1/2 long john, tea - still full 3pm
- has Ensure
- doc visit 8am: platlets too low for chemo ATM
dinner: spag, wildbry ensure, 6, 630 AM diah aggressives
- 125/83
- firmer BMs
- Aly PM -> 11:30
- Dr. Hawking weekend
Sat 2/12 - cup applesauce, supplement, yogurt, org spice tea ---- vomit, all came up
- 8:30 doc Hawking
- platlets? CBC?
- new bed?
- 12pm diah more watery lots
- bad dreams: bright, vivid, dark, depressive
- nap 1230-1
- Angie nutritionist: delay supplements, motility: better than solids sometimes, Reglen - diarrhea, another motility drug? side effects? small solids with no liquids, separate solid and liquids, liquids only: 2-3 meals/snacks? cold and dry post-chemo and not hot; sacchrine reject taste buds (nutritional supp) --> saltines/graham crackers, toast, fruit (strawberry juice bar --> ask in a bowl)
not enough, options:
1) tube nose bypass stom -> intestine, temporary, can go home, can try eating with it (size: top IV, pliable)
1b) line stom -> intestine
1) @ home with pump (continuous or few intervals) or gravity feedings or syringe so many CCs @ time
2) motility and nausea b/c GI; more nutrition thru vein more than IV, perentual outside GI tract port or new, yellow vitamin-colored proteins fat into vein -- in-patient, if you can't eat at all insurance covers; higher risks foreign into vein - infection, $ insurance
Sun: solids, snack, lunch
Sat: PM crm chkn soup; snack: Saltines
- ? diff med than Reglan? exacerbates diarrhea? arithromyacin smaller dose IV
- mid-week < 1500 --> tube discussion
magnesium, phosphorus, albumin (protein) pre-albumin
- people recording tray eating
** 2 pillows from dad bed slightly foldable
- 132/79 3:15pm Lbs: 158
-6:36pm soup, 2/3 yogurt, 1/2 tea
Sun 2/13: cr wheat, orange jello, 2% milk 8:30AM; magnesium shortage
**black pen, refills travel bag, undies/shirts
crackers 7AM (2)
lunch 12pm: chicken soup, vanilla ice cream, org jello, magnesium done 12pm, might do more Monday
? amortization - signing by Mom only?
----> Mom writes:
Dawn said not necessary - no rush.
Lunch 1:20 ate: Clinc Sauge (?) 1/3 jello and all ice cream
Vitals: 98 temp, 135/73, 98 oxgy. <----
Laps: 2am, 3 @ 2pm
160.2
toilet after walk: pee
5.1 potassium (3.5-5.2 good) goes to drop -> 20: 125/hr -> 100/hr
74 platlets (Sat 67, Fri 62)
3:30: 98.6, 130/83
4pm: Reglan
Denise = RN
__________________________________________
CFO: backfills for retirement under critical positions; HCO: nationwide hires normal program work
__________________________________________
mac & chz
mash pot & gravy
chkn noodle
scram eggs
wh toast
applesauce
crm of wheat
light very cherry yog
orange spice herbal tea
vanilla ice cream
orange sherbert
Tiffany - discharge
Sue/Janelle - case management - TPN lipids, metabolic / Dr Gui
12pm supplies
Janelle - home health / home care 830-930 call day of visit
Tiffany - discharge paperwork
Sue - until Sat if not working - case mgr (Rita, Jane)
Dr Gui - metabolic (TPN orders)
insulin?
Nurses - ? home diff
TPN --
TPN 7pm - 7am
home care - 5pm nurse
Hospital Home Care Plus - infusion, formulation meds, mixing
Hospital Home Care - 830-930 am call, let know doc appt, 2 visits first 2 days (tonight, tmw AM)
2/week - first 2 weeks --> 1/week
__________________________________________
picnic: Volta Park 12-4 for AA
__________________________________________
*********************************************************************************
I sewed 2 quilts for Christmas. One for my mom and one for my sister, featuring my dad's tee-shirts. You can see them over on tumblr. I'm making my own now. My sister told me the first year is still shock and maybe by the third year we realize he's really gone. I know he's dead. I know this. But I don't believe it still. It just seems like he's on a trip somewhere. And maybe that's the real truth anyway.
I also knitted 3 scarves and we randomly picked the one we wanted.
I gifted my mom a pair of earrings and me/my sister a necklace - all from our trip to Colorado to bury my dad.
I made a photo album of the photos from the slideshow and added in photos from our trip to Colorado.
Pretty much Christmas was a close-out of The Year of Dad Dying.
I'm hoping there's some new fun in 2012. Not that there wasn't fun in 2011. I went camping and made awesome friends. I got over fears of people that I had developed from drinking and isolating. I got over dislike for animals and adopted an awesome cat. I found my Higher Power and got on my knees for help. I had awesome, sober, fun New Years Eves. I went from standing at the bus stop wondering, "I do have pants on, right?" to gussying up in a skirt and boots. I stopped trolling Craigslist and haven't had sex since October. I baked and cooked all kinds of delicious treats. I joined the gym. I flew to the Midwest 6 times and decided to go other places in the next year. I made friends with women and found I could be friends with men without feeling sexual toward them. I went to therapy and cried my eyes out. I worked through the 8 steps with a super chill sponsor who finds me "illuminating" and is patient through my freak outs. I watched someone die with love and am living with that love.
I think 2012 has potential and I'm ready for whatever comes.
But I have changed a lot this past year. And one of the things I think about is that this blog really doesn't suit me. Sure, I need a place to write it all out - even if only sporadically every other month - but I'm not really Cheating Death Once Again. (Granted, we all are every minute of the day, but that's beside the point.) I'm more Sampling the Life Buffet or something touchy feely like that. We'll see what evolves.
Whatever happens, I'll let you know and hopefully you'll let me know.
Wishing you a delightful New Year. Wishing you a New Year that exceeds what you deserve and is better than you imagined ♥ ♥
Sunday, January 1, 2012
Sunday, September 4, 2011
the game of text tennis
He's 50. I don't remember what conversation points couched that number, but I do remember that he kind of paused and looked at me, just like he paused and looked at me when he said he was married but that it was a long story. I don't really care. It's fun to flirt and I'm not really aiming for this to go anywhere, actually I secretly prefer it doesn't because I'd like to see if I can make friends with men and not have to sleep with them. Not many hetero men I can count that fit in that category, but I'm metamorphisizing in AA. Some men have girlfriends in the programs, fiancees, or are plain ol' single - and I'm learning not to flirt with them, to actually accept them as friends - not conversation partners with cocks.
Doesn't mean I don't like flirting with The Lawyer.
He's at the beach right now - ooh la la. And we exchanged banter about feminism yesterday. And he chided me about how sunny it is where he's at. I'm a masochist.
There are my new girlfriends Mo and T. Mo's at her sponsor's wedding in Michigan. She saw me through the last few weeks of back-and-forth with the Investment Banker. I saw it as sober dating practice, but was lured by his awesome amazing apartment on the 4th floor with a bay window tower looking over the city and a rooftop with gazebo and bonzai. Also, the super expensive, fast car in his garage; and the super cool cat; and that he has a military background; and that he related to so much. Alas, he was interested only on his timeline and couldn't fess up that it was more about sex than dating. I felt pretty strong when he wondered if my silence meant I didn't want him to email me anymore and I said yes and wished him good luck.
T sat through my entire 5th Step (confess your sins to your Higher Power and another human being), which was hardest when discussing my resentments toward my dad, my kissing cousins stories, and my petty grievances over my mother (she doesn't wipe her mouth when she eats -- how shallow am I?!). And she hasn't changed her love for me since those humiliating descriptions (we'll love you til you love yourself, AA says). We've also been pinging back and forth during her trip to NYC and my week-long flu.
There's a potential date who's camping in the hills of Tennessee who thought my fever-induced IM chat was endearing.
There's my sponsor who I thought was a lesbian based on so many stereotypical clues. Check-ins over time.
There's my awesome ex, who still talks to me and lunches with me despite going through the hot mess of my last months of my drinking.
And then there are the texts that I don't send, but think about sending sometimes just to say hi and I love you to my dad.
Doesn't mean I don't like flirting with The Lawyer.
He's at the beach right now - ooh la la. And we exchanged banter about feminism yesterday. And he chided me about how sunny it is where he's at. I'm a masochist.
There are my new girlfriends Mo and T. Mo's at her sponsor's wedding in Michigan. She saw me through the last few weeks of back-and-forth with the Investment Banker. I saw it as sober dating practice, but was lured by his awesome amazing apartment on the 4th floor with a bay window tower looking over the city and a rooftop with gazebo and bonzai. Also, the super expensive, fast car in his garage; and the super cool cat; and that he has a military background; and that he related to so much. Alas, he was interested only on his timeline and couldn't fess up that it was more about sex than dating. I felt pretty strong when he wondered if my silence meant I didn't want him to email me anymore and I said yes and wished him good luck.
T sat through my entire 5th Step (confess your sins to your Higher Power and another human being), which was hardest when discussing my resentments toward my dad, my kissing cousins stories, and my petty grievances over my mother (she doesn't wipe her mouth when she eats -- how shallow am I?!). And she hasn't changed her love for me since those humiliating descriptions (we'll love you til you love yourself, AA says). We've also been pinging back and forth during her trip to NYC and my week-long flu.
There's a potential date who's camping in the hills of Tennessee who thought my fever-induced IM chat was endearing.
There's my sponsor who I thought was a lesbian based on so many stereotypical clues. Check-ins over time.
There's my awesome ex, who still talks to me and lunches with me despite going through the hot mess of my last months of my drinking.
And then there are the texts that I don't send, but think about sending sometimes just to say hi and I love you to my dad.
Monday, August 22, 2011
this morning
It's how I can't believe that my father is actually pulverized dust in a plastic bag, wrapped in 2 other plastic bags, sitting in a cheap urn I bought at a garage sale 16 years ago.
It's discussing with my therapist that I should re-imagine positive outcomes because I've got a mind set to believe in low expectations or none. And how we talked about my passion for photography and she suggested I take a course to get back into it. The first thing I thought about was putting up a show of the photos of my dying and dead father. It's the closest I'd ever been to a corpse. It was beautiful and strange and I wanted to giggle and scream at the same time.
It's how it's a new day and I don't have to do again what I did yesterday. Or the day before.
It's struggling to understand the best way to "turn it over" to my Higher Power, while also being in the driver seat of my destiny. Co-pilot and map-maker I suppose.
It's discussing with my therapist that I should re-imagine positive outcomes because I've got a mind set to believe in low expectations or none. And how we talked about my passion for photography and she suggested I take a course to get back into it. The first thing I thought about was putting up a show of the photos of my dying and dead father. It's the closest I'd ever been to a corpse. It was beautiful and strange and I wanted to giggle and scream at the same time.
It's how it's a new day and I don't have to do again what I did yesterday. Or the day before.
It's struggling to understand the best way to "turn it over" to my Higher Power, while also being in the driver seat of my destiny. Co-pilot and map-maker I suppose.
Sunday, August 21, 2011
seethe
It's partly that the world is so damn unjust. There's all this pain inside. That you just want to find that one thing, you look for it. You don't cause it, but you take the opportunity to seethe in it once it's there. That one incident or that one action by the person you hope for - or just any ol' person - anyone - anything. A cat. A guy you crush on. A parent. A sibling. A stranger in the aisle of the supermarket. Everything is unfair and you've been robbed of things and people. And then they go an disappoint you. They don't call. They don't love you as much as you do them. You drive 4 hours to be with them or do something for them or bring them something. You love them that much to sacrifice. And they flake or they are selfish and ignore the time. But regardless of that moment - it becomes every moment. Every other moment you've ever had where you had a hope or expectation (and you've had so many) and they've all ALL every single one it seems like all been let down or dashed or you've been told not to, not to try, not to think about it. And that one person or that one moment becomes all the pain and hatred and rage and injustice in the whole of your being and past lives and all together now. And the pain is so pinpointed and spread out all over in every cell. You've been let down .... again. All you do is wish for, want, long... Your whole fucking life is just one long wwwwwwwaaaaaannnnnnnnnttttttttt. And you're never getting that love, that cuddle, that hand to hold, that forgiveness, that acceptance, that love... that love.... from your parents or from god.
And the heartbreak - again - once more - every fucking time - is unbearable.
And the heartbreak - again - once more - every fucking time - is unbearable.
Sunday, August 14, 2011
Lately
Good days, bad moments. It used to be doing dishes I would cry. One week it has everything to do with the vortexes that suck me in: the German girl on the bus wearing eyeglasses - towards the end he suffered cataracts and so badly wanted the surgery; trying to explain to someone the trial of what I lived - a vision of his fragile bony body like a concentration camp victim; and always, always, always, the one-on-one conversation we had where I told him how much I loved his hands and knew he'd always be with me because we had lived so many lives before together and he whispered, "L... I love you, too."
It's 8.5 months sober now. I feel amazing, life is awesome. No shit. Through all this bullshit, sadness, depression, missing my father, worrying about my mom's drinking combined with Ambian, struggling to form a real relationship with my sister, working non-passionately, war, famine, pestilence and all of life's tragedies - I am sober. I am feeling it. I am living it. I am awake. I think that's the biggest thing. I am awake. And I am making choices. It's incredible, really. Painful, ugly sometimes, confusing a lot, but thoroughly better than how I had been living.
I don't crave booze, I crave cock. And the healthy brainwashing of AA has me turning my focus on my sexual proclivities. Is it a craving - a verifiable craving of the chemicals in my brain that want sex? Or, am I simply a woman with a healthy sex drive? Am I replacing something with all the cock? Am I seeking something that is void in me? Or, am I feeling the pressures of society - thinking I should settle down, have babies, partner up. Am I a bonobo by nature or is it another chemical imbalance?
There was the monthly screw with Joe Awesome from January to June. Then, I introduced a date with Chris Depressed that opened a door for possibilities. A desire put me out on Craigslist again and in touch with Carl the writer, who I've seen twice and enjoyed thoroughly. A random decision to say yes to Will Rooftop and 2 hours of incredible, exhibitionistic sex on his open air rooftop terrace and another date filled with brutally honest discussion that made me feel like I was on a date with a mirror.
I don't feel desperate, I feel hungry. I want to justify that I'm still date-able, attractive, together despite these 2 overlapping current-quilts of personality change and disorder. I feel shifts within. I want the libertine freedom and independence, but I miss the partner that sticks by my side through it all. I want to cook together (albeit, I'll wear a maid's apron and nothing else). I want to clean our place (with nipple clamps and a hood). I want to go to the movies and we plainly share popcorn. I want to cuddle and wake up hungry. I want to be there for the tragedies that shake a person's orientation - my old boss, after his parents died "It's very disorienting" a perfect description. And celebrate the hurdles and wins.
Carl said his (ex-)girlfriend (debatable at this point), 15 years his junior, doesn't want to take care of him when he's in diapers. I don't know that I do either, but I want to take care of someone when he's in diapers. I've done it. I've see it. I'm not afraid.
I want love.
Mad, passionate, life-filling, prick our fingers blood-brother/sister swearing, television watching boredom, soup making when we're sick, swinger party exploring, whole and entire trust foundation love.
Life is changing on me, in me.
Or is it the same fabric, different shade?
I am the whore evolving. I wonder about pregnancy, but turn away at the prospect of swearing allegiance for 18 years and 50 more on top.
.........
And then there's Salvador the cat. He's amazing. It's a lot of fun to have a lovable creature in my life. I think he likes it here with me. He seems to have missed me when I went to my mom's for a week. I had a friend stop in - the first sober share of my flat, the first lady friend to see my cave. He enjoyed the company, but I think he missed me. He's supposedly 27 pounds big - a large breed naturally and a bit over-juiced before I got him. We eat less together and we play with racing around the flat. He sits on my chest at night and we purr together. I wake up at 6am on a Saturday sneezing my eyes out, but allergy meds clear it all up. A small sacrifice, as I'm finding. Pets do matter. I'm starting to get it. He's pretty cool.
..........
I wouldn't know where to start at all, but I'm dreaming more and more of putting some kind of book together. I have no idea what the running theme is or how to connect it all. There are bits and pieces and some good stories. A book of short stories? Ala "Little Birds"? It seems like so much of a business, something I would have no idea how to navigate - and not sure I'd want to. I wish I could just ship all the notebooks and all the pages off to some super scribe. I've already written it - I don't want to re-live it again.
This is of late.
It's 8.5 months sober now. I feel amazing, life is awesome. No shit. Through all this bullshit, sadness, depression, missing my father, worrying about my mom's drinking combined with Ambian, struggling to form a real relationship with my sister, working non-passionately, war, famine, pestilence and all of life's tragedies - I am sober. I am feeling it. I am living it. I am awake. I think that's the biggest thing. I am awake. And I am making choices. It's incredible, really. Painful, ugly sometimes, confusing a lot, but thoroughly better than how I had been living.
I don't crave booze, I crave cock. And the healthy brainwashing of AA has me turning my focus on my sexual proclivities. Is it a craving - a verifiable craving of the chemicals in my brain that want sex? Or, am I simply a woman with a healthy sex drive? Am I replacing something with all the cock? Am I seeking something that is void in me? Or, am I feeling the pressures of society - thinking I should settle down, have babies, partner up. Am I a bonobo by nature or is it another chemical imbalance?
There was the monthly screw with Joe Awesome from January to June. Then, I introduced a date with Chris Depressed that opened a door for possibilities. A desire put me out on Craigslist again and in touch with Carl the writer, who I've seen twice and enjoyed thoroughly. A random decision to say yes to Will Rooftop and 2 hours of incredible, exhibitionistic sex on his open air rooftop terrace and another date filled with brutally honest discussion that made me feel like I was on a date with a mirror.
I don't feel desperate, I feel hungry. I want to justify that I'm still date-able, attractive, together despite these 2 overlapping current-quilts of personality change and disorder. I feel shifts within. I want the libertine freedom and independence, but I miss the partner that sticks by my side through it all. I want to cook together (albeit, I'll wear a maid's apron and nothing else). I want to clean our place (with nipple clamps and a hood). I want to go to the movies and we plainly share popcorn. I want to cuddle and wake up hungry. I want to be there for the tragedies that shake a person's orientation - my old boss, after his parents died "It's very disorienting" a perfect description. And celebrate the hurdles and wins.
Carl said his (ex-)girlfriend (debatable at this point), 15 years his junior, doesn't want to take care of him when he's in diapers. I don't know that I do either, but I want to take care of someone when he's in diapers. I've done it. I've see it. I'm not afraid.
I want love.
Mad, passionate, life-filling, prick our fingers blood-brother/sister swearing, television watching boredom, soup making when we're sick, swinger party exploring, whole and entire trust foundation love.
Life is changing on me, in me.
Or is it the same fabric, different shade?
I am the whore evolving. I wonder about pregnancy, but turn away at the prospect of swearing allegiance for 18 years and 50 more on top.
.........
And then there's Salvador the cat. He's amazing. It's a lot of fun to have a lovable creature in my life. I think he likes it here with me. He seems to have missed me when I went to my mom's for a week. I had a friend stop in - the first sober share of my flat, the first lady friend to see my cave. He enjoyed the company, but I think he missed me. He's supposedly 27 pounds big - a large breed naturally and a bit over-juiced before I got him. We eat less together and we play with racing around the flat. He sits on my chest at night and we purr together. I wake up at 6am on a Saturday sneezing my eyes out, but allergy meds clear it all up. A small sacrifice, as I'm finding. Pets do matter. I'm starting to get it. He's pretty cool.
..........
I wouldn't know where to start at all, but I'm dreaming more and more of putting some kind of book together. I have no idea what the running theme is or how to connect it all. There are bits and pieces and some good stories. A book of short stories? Ala "Little Birds"? It seems like so much of a business, something I would have no idea how to navigate - and not sure I'd want to. I wish I could just ship all the notebooks and all the pages off to some super scribe. I've already written it - I don't want to re-live it again.
This is of late.
Friday, July 29, 2011
My book
I think I'm going to write a book about a girl in the last [weeks? month/s?] of her sexual addiction before she goes to rehab.
Sunday, June 5, 2011
The gall of so-called Christians
Over the years there's been this super rude and annoying commenter who posts passages from the Bible in the comment section. I moderate comments to spare the reader his crap. I rarely read the comments and just delete them. But I was curious about this one that he recently posted to comment on my story of my dying father.
Luke apparently talks about some king that was sent to hell and some beggar that went to heaven and the king begs for water because there's none in hell.
This is as equally appalling and non-Christian behavior as those dumbass protesters who stand at the funerals of fallen soldiers.
My father was a Christian. He taught Lutheran Sunday School for years. He belonged to Lutheran churches all over the world. He made us kids attend church with him. When I was 18, I told him I couldn't continue to attend because I didn't believe the words or practices. He encouraged me to find faith. My father donated to causes of justice, helped disadvantaged populations, and always tried to live life under Christian principles: love they neighbor, do unto others as you'd have unto you, espouse peace not war, etc. He was revered in the community for his sage advice, assistance to any worthy cause at any time needed, and passionate friendship.
It's Christians like you that give religion a bad name. How about you read up on your principles? Matthew 7 for instance. A good reminder.
Frankly, I prefer to interpret my dad's vision from the other side as a fabulous cocktail party out in the woods. Kegs and shakers abound - who needs water?
"...he said that there's no water at the party and could we get him some."
Compare with Luke 16:19-31. Especially v.24
Luke apparently talks about some king that was sent to hell and some beggar that went to heaven and the king begs for water because there's none in hell.
This is as equally appalling and non-Christian behavior as those dumbass protesters who stand at the funerals of fallen soldiers.
My father was a Christian. He taught Lutheran Sunday School for years. He belonged to Lutheran churches all over the world. He made us kids attend church with him. When I was 18, I told him I couldn't continue to attend because I didn't believe the words or practices. He encouraged me to find faith. My father donated to causes of justice, helped disadvantaged populations, and always tried to live life under Christian principles: love they neighbor, do unto others as you'd have unto you, espouse peace not war, etc. He was revered in the community for his sage advice, assistance to any worthy cause at any time needed, and passionate friendship.
It's Christians like you that give religion a bad name. How about you read up on your principles? Matthew 7 for instance. A good reminder.
Frankly, I prefer to interpret my dad's vision from the other side as a fabulous cocktail party out in the woods. Kegs and shakers abound - who needs water?
Friday, May 27, 2011
180
It's six months sobriety today. I can't even say "one day at a time". I have no idea when a day ends or begins. Time is screeeaming by. But it's time I start writing some of it down or I'll forget. They say the first year of sobriety is a haze. I've heard some people say they don't even remember it. I'm kind of banking on that in a way. These six months have been rather fucked up.
But I do and will want to remember.
I have this whole story developing. It started back in 2007, when he showed me the new property they'd bought in anticipating of building their real retirement home. Just before I went to Paris for grad school.
But I can't seem to write it fast enough for all the thoughts and feelings that come up. So, I guess there will be tandem tellings.
I flew out on March 30. I had just started fighting a cold. I landed and a family friend picked me up at the airport and brought me back to her house. I was so frustrated to have come all the way, with time tick tick tick draining away, and I couldn't even go to my parents' house. I was contagious. Last thing I needed was to get germs into the house.
On March 31 the doctor said it was a sinus infection and gave me meds. I cried in her office. She was actually a nurse practitioner or something who worked with one of the doctors that had treated my father. I cried because I desperately wanted to be with my family. I cried because I had a bad fever. She told me it wouldn't affect my dad (which now seems logical - how would a man dying of cancer get a sinus infection? As if it would somehow speed things up or make them worse. Or somehow, my germs would overpower the chemo, the radiation treatment, and all the drugs). And likely I wouldn't affect my mom and sister because I wasn't contagious. I could just wear a mask and wash my hands. But, she said, clearly I needed to be with them and that was much more important than germs.
On April 1 it was 24 hours and I went to the house. I quit smoking this day.
It was such a relief to be there. I wore the mask the first two days because we all thought that his immune system was so weak that he could somehow catch a sinus infection - and how disastrous that would be. Funny to look back on that now. As if we were still in fighting mode. I guess we were.
Dad was still in his bed. My sister didn't go back to Minneapolis like she had planned. In fact, for the next two weeks we really didn't leave the house at all. My sister ran to town one day. My mother another day.
It was gradual and it was quick. He changed from one day to the next. It came faster than anticipated and dragged on painfully. By Saturday April 2 we had moved from pill medication to liquid:
Sunday April 3:
These were not private diary posts, but communications to family and friends. My father lost speed and steam and energy and life very quickly over time. It was just too hard for me to say it directly. And the backrubs were constant. It seemed that the tumor on his left kidney was causing severe pain and it helped to press on it. My sister, with the claw hands, was best at the deep massage. I was better at a more reiki type of activity, with my hands centered on his back as he sat, meditating on a cool light-blue light spilling throughout his body, cooling the firey heat of the cancer. My aunt commented that she thought I looked like I was guiding him from a cocoon into a butterfly.
Meds were the quarters for the day: morning, noon, afternoon, night. It was ABC med 4 times a day, DEF med 2 times, GHI at night, JKL as needed but only every 4 hours. There was not only the tumor on his left kidney but the cancer that had appeared to spread along the intestine below the stomach, which caused the appearance of a "blockage", thus complicating any intake of liquids or food for the past several months and also leading to the quick switch to liquid meds. The liquid versions of his pills were foul tasting (apparently - not that I tried his ketamine - thank god for being in AA! I remember hearing about the raver kids in college totally getting off on Special K... I can only imagine the hell that would have been if I decided to party), so we added apple juice to the mix, and later orange gatorade. And, later, when even liquid wouldn't stay down or would cause too much nausea, liquid drops under the tongue. Still the same morning, noon, afternoon, and night.
Time disappears. Time is not going outside for a walk with the dogs around the yard because you forget who's tagged in for med time. Time is give the meds now, find something to do for four hours, give the next round of meds. Check dad. Rub dad. Eat something. Watch the eagles. Talk about paperwork that's gotta get done. More meds.
Monday April 4:
This was a crucial decision and discussion. Most interestingly, is how we all sat with the NP in dad's room and talked it through - dad including. It was clearly a major step in the process. Up the pain meds, reduce the ability to interact.
Tuesday, April 5:
Wednesday, April 6:
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It was Monday when the nurse started having discussions with us about timelines and provided us some literature on the dying process. My sister and I, internet savvy and hounds for knowledge, had already looked up all of these things online. It still didn't seem real. Although, we watched for the symptoms. While we didn't have all of the signs play out, we did notice
Signs of the preactive phase of dying:
-increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
-increased periods of sleep, lethargy
-beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
Signs of the Active Phase of Dying
-dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
-inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
-patient breathing through wide open mouth continuously and no longer can speak even if awake
-patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
-jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards
-mottling
My sister couldn't stop with the mottling. It was her one sign. She'd over-fiddle with his catheter bag, working gravity to help pull more urine out of his bladder. We had had a bad night when the cath had gotten plugged with mucus and he wet himself. I think more than anything my father hated bodily fluids for some reason. He could mow the lawn in 80F weather on my grandparents' farm, sweat buckets, joke around and rub his sweaty face on yours. But there was something very undignified for him in pee. After this episode, my sister couldn't stop fiddling. She even roped me in to the gravity game.
And if it wasn't the cath bag, it was mottling. "Look at his feet." He would sit on the edge of his bed for hours (before we got the way more comfortable hospital bed that could be raised up and lowered, and could prop his knees up). He'd sway, but not want to lie down. His feet would turn purplish and get cold. But he loved his bed. He paid like thousands of dollars for it. So, it took us a while to figure out that a hospital bed would be better. He only stayed in it 5 days.
The mottling. It would come and go. Toward the last days it crept up more greatly. On the morning that he died, it crept up all the way to his bald head.
It was around this time that he also started to give us glimpses. The hospice nurse called it a gift. His hallucinations or visions. Whatever you want to call them. Walking between death and life. Seeing the afterworld. Or, if you prefer, his brain started misfiring dreams.
4/7/2011, 2:11pm:
Sitting with him after the Fed Ex truck left.
He said, "Trucks can only go one-way on one-way streets."
I said, "Yes, there's only driving one-way on the one-way streets. You can't drive both ways on a one-way street."
He said, "There are only one-way streets. Let me know if you want me to drive/take you there/show you/you need to get there." (Something along those lines, as if he could drive the one-way streets or would know them. I had no idea what he was talking about. I was thinking that he was remembering driving the streets of Toledo, Spain.). "Can only go one-way so it takes a while."
[Then I realized he might have meant the path to the next life.]
He continued, "If you go à pied you can go both ways." [à pied / a pie = on foot]
I said: [in French and then Spanish:] "Si tu est a pied, tu pouvouis marcher. Si tu estas a pie, tu puedes caminar. If you go on foot you can walk (it).... "
I said: "Remember the streets in Toledo, Spain? Very narrow one-way streets. But beautiful. I bet the one-way streets are beautiful there. Are they beautiful?"
Dad went back to sleep and we helped him lay down.
One night the pain meds ran out. Because they'd be one hell of a hot commodity on the market, we weren't given the passcode to set him up with a new bag. It was about midnight. Midnight in the middle of the countryside. The unlucky hospice nurse, who we saw about 4 nights in a row for a bad luck stretch, had to drive 45 minutes to get to us. (This wasn't troubling, because Dad was a DNR - do not resuscitate. It just meant that we would worry that he wouldn't get his pain meds, the machine would continue beeping, and our sleepless night would now be punctuated with more stress.) We paused his pain meds for a bit while we waited on her arrival. When she got there, she had to walk through the instructions to set it up. And while my sister and I stood by her side to help, we were all treated to a message from the other world:
4/7/2011, midnight, Dana Hospice Nurse visiting, squatting at side of bed, working on laptop. Dad just bolted up and with a smile and giddy almost like a schoolgirl, glowing eyes asked each one of us:
"Are you my boyfriend?
Are you my boyfriend?
Who's my boyfriend?
"There's a party. I want to leave this world and go to the party. Can I leave this world and go to the party?"
- My sister and I replied yes. Of course.
Then, he said that there's no water at the party and could we get him some.
He turned to me and said "mamoosh babcrushka with ice" We asked him to clarify because we thought he said with crushed ice. He repeated "mamoosh babcrushka with ice".
Then, he lied back down.
I was simultaneously elated and terrified. When the nurse had finished hooking up the pain meds, we went into the hall and whispered about what just happened. Whispered, because, while my father had suffered from some hearing loss due to flying military airplanes for much of his career, toward the end of life, he could hear a pin drop 2 rooms over.
I started to cry, while smiling. (This actually happened frequently the day after a night shift.) This was an incredibly beautiful and moving moment, but from this night onwards I was constantly afraid that I'd be alone on night duty and have to deal with another spooky communication like that. I also felt more and more sensitive to the creaks in the house, which only happened in his bedroom or in the living room where we slept. I could sense death walking the halls, standing on the porch outside, and hovering in my dad's bedroom.
I don't remember which day we realized that we needed to divide ourselves up. We'd been doing things as the 3 of us: sitting by his side, providing meds, making dinner. We realized at some point, I think his sister suggested it to me and I spoke it aloud to my sister and mom, that it would help us all more if we split up efforts so we weren't wearing ourselves out.
It was around this point, too, that we decided we needed take the counsel: tell your loved one it's okay to let go. Individually, we spent some time with him and said our goodbyes. I told him that I knew we'd known each other in previous lives and that we'd know each other again. I told him that I knew he'd always be with me. I told him that I'd always loved his hands - long, lean fingers with sturdy, flat nails. I told him that I loved him and would always love him. And, I held his hand. And, his glazed eyes shed one small tear out of the left side. And, he said, "L, I love you, too." And, I will always always always carry that.
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Saturday, April 9:
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Riddle of the time of passing
Me: Dad, we're done with meds. You can rest now.
Dad: I'll rest after the celebration of the sneeze and the golden birthday. After we have dinner. Now, let's get on with this process... (looking at the stomach pump, the pain med pump, the bedside commode, the garbage bin)
Me, searching on Google finding nothing, walking the dogs over their land, thinking and thinking: What's a celebration of a sneeze? "Bless you"... Sunday? ...Who's got a golden birthday in April? My cousin's baby turns 1 year old on 4-10-11, maybe it's a mix up: 1 on 4-11-11?
From the death bed of my father
Dad (looking at the floor between he and my sister, staring off into the distance; as I walk up to his bedside): Look out for the pathway.
Me: Am I on it?
Dad: Almost.
My sister: Am I on it?
Dad: Perhaps.
I think it was over the weekend that we decided, with some thought and little fanfare that we'd remove the TPN. At the time, while I wasn't feeling impatient, I was feeling overly sensitive to my father's pain. If keeping him on TPN was causing him to suffer more, if it prolonged or extended the dying process, it made no sense to me. And I knew this. As a family, we had already talked to each other about the "if we end up in a coma" decision - pull the plug. We had the option to ween him or stop providing it. I was prepared to stop altogether.
I was ready for this because my father was not my father any longer. He was a shell. Once I had said my good-byes, I knew that he was crossing over more and more, and what we were left to do was care for the vessel he had needed and used. We needed to guide it as gently as possible to a still place so he could use the remaining energy and focus to get out of it. Discontinuing TPN allowed the body to chart its own natural course, freeing the spirit from the veiny bonds.
I guess my sister and mom weren't as ready so we decided to ween. That only lasted a day though because no one was interested in staying up one hour later to start the TPN or waking up an hour earlier to stop it. And, the way our brains were working, there wasn't an option to change the process and introduce it during the day.
After we stopped the TPN, his urine output continued steadily, which was shocking in a way. Nothing going in. Why is it coming out? And, oddly, the left kidney was being pinched by a tumor and the right kidney was his bad one, so how on earth was it happening?
He was a skeleton when he died. My sister said he looked like a concentration camp victim. When the nurse came to bathe him again, or when we wanted to freshen him up to prevent bed sores, we would roll him on his side. It was painful for him so I tried to make it light as I leaned over and held his chest, arms, and face to me, "I'm the lucky daughter. I get the special hugs today." But his body was so brittle and bony. I hated that it caused him pain.
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Sunday April 10:
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His friends and family sent so many good words. We read many of them in the beginning, but over time he wasn't interested or refused. I think he was regretful and wanted to hold on. He had been fighting the cancer for so long and was ready to fight more. Just that the cancer, which was made of his own body, had the same will. I think after a time the words hurt him and tied him more to this world, so he refused to hear them. And, they were sweet:
I understand you have filed your flight plan and that the tower has cleared you for take off. This will be your flight of a lifetime and I know that a happy landing awaits. I am so glad to be your friend. Know that we have your "six" and that friendship never ends.
I love you.
Charles Z.
I had night duty on Monday, April 11. I had feared it the Saturday, 9th. But I used the AA mantra "I'm turning it over to you. I'm turning it over to you." And asked my Higher Power for all the strength I could summon to brave the night. Monday night wasn't scary. Death wasn't clamoring. It wasn't a bull impatiently clawing at the dirt. It wasn't haunting. It was, instead, nearby. Death was watching now, with a lazy eye, disinterested with the torment my father's body was facing. Disinterested, but not unaffected.
My sister had slept in his room the night before, in an uncomfortable chair and position. So, I pulled the more comfy chair up, grabbed an ottoman, and propped up next to his bed with a blanket wrapped around me, my hand holding his.
His breathing was more difficult now. And the death rattle increased tremendously. Supposedly it's supposed to be more discomforting to us alive people than to the dying, but I disagree. My father tried with might to sit up a few times to cough it up. And when it bothered him, I hit the pain med button. I hit it as often as I could and sometimes timed the 15-minute intervals so I could preempt the complication. For some reason, at the time, my sister felt negatively about that action and choice of mine, but the hospice nurse the next day indicated it was appropriate to get ahead of the pain. Every 15 minutes. All night. I think it was one of the longest nights of my life. But it meant probably the most of anything in my life.
My sister had the night of April 12. He wasn't as bad. His breathing was still more inconsistent but the rattle had subsided quite a lot from what we hoped was the atropine finally working.
The morning of the 13th, I woke up from the couch and relieved my sister at about 7:30am. I told her to go downstairs to sleep, but she was stubborn and said no. We started the coffee. His breathing was raspy, louder, almost demanding something. The hospice nurse called to check in. We planned to see her in the afternoon. I got on the internet, looking for some good, magic words. A poem perhaps. Something to read to him to help him let go, send him on his way. I stopped at "On Death" by Kahlil Gibran and thought I should read this later on in the day. My mom had woken up, opened the blinds in his bedroom, the sun was soft, bright spring. She opened the window to let the birds' songs in and sat by my dad's side and my sister was on his other side. I put the laptop down and went to the room, and stood at the foot of his bed. My sister stood up and made the motions to cleanse his chi, floating her hands above his body, sweeping, sweeping. I grabbed the stool and sat down, holding his feet, his cold feet, in my hands. The mottling was visible up on his face.
I got up and got my camera - I had been taking photos throughout - and snapped a few. I sat back down on the stool and held his feet. My sister reached her hand across to his chest. His breathing had slowed. We sat in silence, holding him. She reached her hand over to his chest again and felt for a heartbeat. I watched him. In the quickest instance, I saw a light, white swirl like smoke tendrils above his belly. My sister stood up and reached over to his heart again.
We didn't really know what to do. We sat for a few minutes. And then, we decided to call the hospice nurse. As I got up to call, I looked out the window and she was pulling up. She came into the bedroom, listened with the stethoscope. "Are you sure?" I asked her.
She left us and did some work in the kitchen. I closed the bedroom door and created a sacred space, cleansed his chakras, closed the space. Mom decided what he'd wear for the cremation. I took photos. We called the funeral home. The hospice nurse waited. They put him on the gurney, leaving his face uncovered. We followed him out. They lifted him into the hearse (that was a PT Cruiser). We kissed his forehead. The hospice nurse left.
Wednesday, April 13:
But I do and will want to remember.
I have this whole story developing. It started back in 2007, when he showed me the new property they'd bought in anticipating of building their real retirement home. Just before I went to Paris for grad school.
But I can't seem to write it fast enough for all the thoughts and feelings that come up. So, I guess there will be tandem tellings.
I flew out on March 30. I had just started fighting a cold. I landed and a family friend picked me up at the airport and brought me back to her house. I was so frustrated to have come all the way, with time tick tick tick draining away, and I couldn't even go to my parents' house. I was contagious. Last thing I needed was to get germs into the house.
On March 31 the doctor said it was a sinus infection and gave me meds. I cried in her office. She was actually a nurse practitioner or something who worked with one of the doctors that had treated my father. I cried because I desperately wanted to be with my family. I cried because I had a bad fever. She told me it wouldn't affect my dad (which now seems logical - how would a man dying of cancer get a sinus infection? As if it would somehow speed things up or make them worse. Or somehow, my germs would overpower the chemo, the radiation treatment, and all the drugs). And likely I wouldn't affect my mom and sister because I wasn't contagious. I could just wear a mask and wash my hands. But, she said, clearly I needed to be with them and that was much more important than germs.
On April 1 it was 24 hours and I went to the house. I quit smoking this day.
It was such a relief to be there. I wore the mask the first two days because we all thought that his immune system was so weak that he could somehow catch a sinus infection - and how disastrous that would be. Funny to look back on that now. As if we were still in fighting mode. I guess we were.
Dad was still in his bed. My sister didn't go back to Minneapolis like she had planned. In fact, for the next two weeks we really didn't leave the house at all. My sister ran to town one day. My mother another day.
It was gradual and it was quick. He changed from one day to the next. It came faster than anticipated and dragged on painfully. By Saturday April 2 we had moved from pill medication to liquid:
Sorting out the routine of pain meds, stomach pump, TPN, and addressing nausea has been challenging with an ever-changing landscape, but we've been managing to go with the flow with humor and cooperation. Dad was having some challenges with the oral solid pills that treat nausea, pain, and inflamation. We've switched over to liquid form of those now and they seem to be more palatable. We had a nice visit from a Hospice nurse today to check in on things and truly appreciate their kindness, patience, and jovial attitude.
Dad's been resting quite a lot throughout the day and night while struggling with managing the pain and nausea, but he's not lost his sense of humor.
We joke that the TPN in its long, flat backpack looks like a pizza box.
"Your pizza, sir," I said.
"Monsieur," my sister said.
"What?" Dad asked. "They serve pizza in France?"
Sunday April 3:
I took the night shift to give Mom and my sister a break. Dad and I had frequent interactions as he struggled to find comfortable positions for sleeping to counter the pain and nausea. We think that today some of the nausea has abated due to the introduction of a different med. The pain is also being met with continued meds and it all seems to help.
We woke up this morning to the rainy thundersnow sleet, with dogs taking cover, and slush ice covering the eastern facing kitchen . While it was a grey day, it felt kind of Spring-filled as we watched some of the snow melt in the front yard to show grasses underneath. We were also treated to a pair of sandhill cranes flying over the house, which Dad smiled at hearing.
I won't speak for the rest of my family, but it seems to me an interesting situation as life is now punctuated by hourly medications and not by the names of days or numbered dates. Memory loss can be contagious, as I tell my sister that I'll remember to ask Mom about something, forget what that thing was, ask my sister, she forgets, and we all end up giggling on Mom's bed for a while. We have a delicate power to enjoy humor in the little details and absurdities of our own activities.
Last night, he was excited about brushing his teeth so we maneuvered him into the bathroom and returned him to bed with a bright smile. Today, he did the same, although it took a bit more energy out of him so we might be bringing the bathroom to him next time -- bedside service!
Dad's still showing his wit now and again with wise cracks or concurring with one side or the other in jokes (ahem, my sister won the hospital-corner contest in the bed-making today), although he does seem to be lacking a bit of steam. We're grateful for the quiet moments when we're able to provide some comfort through reading aloud or a back rub, and are fortunate for the chance to be with him - and be together.
These were not private diary posts, but communications to family and friends. My father lost speed and steam and energy and life very quickly over time. It was just too hard for me to say it directly. And the backrubs were constant. It seemed that the tumor on his left kidney was causing severe pain and it helped to press on it. My sister, with the claw hands, was best at the deep massage. I was better at a more reiki type of activity, with my hands centered on his back as he sat, meditating on a cool light-blue light spilling throughout his body, cooling the firey heat of the cancer. My aunt commented that she thought I looked like I was guiding him from a cocoon into a butterfly.
Meds were the quarters for the day: morning, noon, afternoon, night. It was ABC med 4 times a day, DEF med 2 times, GHI at night, JKL as needed but only every 4 hours. There was not only the tumor on his left kidney but the cancer that had appeared to spread along the intestine below the stomach, which caused the appearance of a "blockage", thus complicating any intake of liquids or food for the past several months and also leading to the quick switch to liquid meds. The liquid versions of his pills were foul tasting (apparently - not that I tried his ketamine - thank god for being in AA! I remember hearing about the raver kids in college totally getting off on Special K... I can only imagine the hell that would have been if I decided to party), so we added apple juice to the mix, and later orange gatorade. And, later, when even liquid wouldn't stay down or would cause too much nausea, liquid drops under the tongue. Still the same morning, noon, afternoon, and night.
Time disappears. Time is not going outside for a walk with the dogs around the yard because you forget who's tagged in for med time. Time is give the meds now, find something to do for four hours, give the next round of meds. Check dad. Rub dad. Eat something. Watch the eagles. Talk about paperwork that's gotta get done. More meds.
Monday April 4:
Dad rested quite a bit until we had a visit from the home health aide who was so cheerful and compassionate, friendly and gentle. She came over to help with showering, but as Dad is very low on energy she was able to give a bed bath. Turns out her whole family is in the caretaking business and we might meet her cousin later this week for Dad's next bed bath, nail trimming, and shaving. The whole experience totally mellowed Dad out so that he slept most of the rest of the day except when the NP stopped by.
The NP's pretty great, too. She changed Dad's port, brought new supplies, helped us understand better how to comfort and support him, and listened to his chest. Dad's breathing had changed over the weekend, which we were assured is a natural part of the process. We also wanted to talk to her about pain management. While the pain med doses were helping, Dad was still feeling enough pain that he was interested in addressing it better. It wasn't an easy decision for us, because neither Dad nor Mom, my sister, or I enjoy the side effects of grogginess and haziness. But it was also a very important decision for us to make. Managing his pain and providing comfort is key at this stage. So, we all decided together that it would be better to increase the doses.
This was a crucial decision and discussion. Most interestingly, is how we all sat with the NP in dad's room and talked it through - dad including. It was clearly a major step in the process. Up the pain meds, reduce the ability to interact.
After the NP visited with Dad and changed the port, she sat with Mom, my sister, and me and patiently answered all our questions (that we had at the time - new ones arise every minute it seems). While trying to pinpoint the last moment would be helpful for our preparation - and his - it's just not as obvious as a date on a calendar or a moon phase. But there are symptoms to look for and we're paying attention for them, while focusing on giving the most patient and loving care we can. Of course, as you all know Dad, it can sometimes be challenging. He's a smart customer, a man with opinions, and has an eye for detail and attention. Despite the meds haze and the fog that pervades, he still appreciates a towel on his lap as we change tubes, a specific way of preparing for certain medical procedures, etc. But as his daughters, we have also inherited quite the same traits, so we embellish our own knack for detail by folding cords just so, cleaning connections well, and comprehending the source of some of his needs. (Perhaps these are both our separate but similar ways of expressing some control over a situation that has none and changes every hour.) As his wife, Mom patiently humors and takes on intimate tasks with courage.
Tuesday, April 5:
Dad rested most of the day, partially due to the awesome bed bath he'd gotten on Monday and a lot to do with the need for rest now. My sister and I took turns tagging in/out to help Dad with meds, a process that seems to evolve quickly.
Wednesday, April 6:
Having increased the pain meds in his port, the other medications to address the symptoms for nausea and longer-term pain have become a bit harder to ingest. The fog slows things down a lot and his stomach, growing more sensitive to the slightest additions or changes, isn't as receptive to the liquid meds. Despite this, last night he slept rather well - almost too well! As the night nurse, I tried to balance the urge to make sure he was alright and the need for sleep for us both. Thankfully - and not - he's started having random, infrequent hiccups that were an indication to me that he was doing okay through the night.
This morning, I woke him up for meds and also was able to share some really cool news. Someone he supported in the elections won. He was so happy to hear this news, his face lit up and the fog was visibly and quickly lifted - if only momentarily. I could tell he was proud, thankful, and pleased for the candidate.
Meds are again a challenge so we've moved to providing them with droppers under the tongue. The taste and scent don't seem as irritating to him today and he seems relieved of the process of pysching himself up for them, getting them to his mouth, swallowing, and concentrating on relaxing (ha!) to abate nausea.
We had a nice visit with the social worker this afternoon, and my sister got a breather in town. I was able to get some work done this afternoon as Dad slept. The spring sun has melted away quite a lot of the snow. My sister got to see a huge flock of swans fly overhead the house. Mom's enjoyed romps with the dogs in the yard. Dad's been able to hear some of the birds singing. And we've all benefited from fresh air flowing through the house - finally, windows open!
We were also visited the past days by neighbors in the area who have become friends either prior to Dad's illness or during these recent days. We're grateful for the dog-sitting (gives them a relief from being in the same house/yard and allows them a break from the stress of caregiving too), books on hospice care, the offer to run grocery shopping, the many dishes of homemade soup, pasta, chili, pie, jam, and the like. As most know, it's tiring giving care and by the end of the day or even at morning breakfast it's hard to find the gusto for cooking or even finding flavor in food. It's been such a relief to have all this healthy food made with love, and the brief but kind visits.
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It was Monday when the nurse started having discussions with us about timelines and provided us some literature on the dying process. My sister and I, internet savvy and hounds for knowledge, had already looked up all of these things online. It still didn't seem real. Although, we watched for the symptoms. While we didn't have all of the signs play out, we did notice
Signs of the preactive phase of dying:
-increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
-increased periods of sleep, lethargy
-beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
Signs of the Active Phase of Dying
-dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
-inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
-patient breathing through wide open mouth continuously and no longer can speak even if awake
-patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
-jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards
-mottling
My sister couldn't stop with the mottling. It was her one sign. She'd over-fiddle with his catheter bag, working gravity to help pull more urine out of his bladder. We had had a bad night when the cath had gotten plugged with mucus and he wet himself. I think more than anything my father hated bodily fluids for some reason. He could mow the lawn in 80F weather on my grandparents' farm, sweat buckets, joke around and rub his sweaty face on yours. But there was something very undignified for him in pee. After this episode, my sister couldn't stop fiddling. She even roped me in to the gravity game.
And if it wasn't the cath bag, it was mottling. "Look at his feet." He would sit on the edge of his bed for hours (before we got the way more comfortable hospital bed that could be raised up and lowered, and could prop his knees up). He'd sway, but not want to lie down. His feet would turn purplish and get cold. But he loved his bed. He paid like thousands of dollars for it. So, it took us a while to figure out that a hospital bed would be better. He only stayed in it 5 days.
The mottling. It would come and go. Toward the last days it crept up more greatly. On the morning that he died, it crept up all the way to his bald head.
It was around this time that he also started to give us glimpses. The hospice nurse called it a gift. His hallucinations or visions. Whatever you want to call them. Walking between death and life. Seeing the afterworld. Or, if you prefer, his brain started misfiring dreams.
4/7/2011, 2:11pm:
Sitting with him after the Fed Ex truck left.
He said, "Trucks can only go one-way on one-way streets."
I said, "Yes, there's only driving one-way on the one-way streets. You can't drive both ways on a one-way street."
He said, "There are only one-way streets. Let me know if you want me to drive/take you there/show you/you need to get there." (Something along those lines, as if he could drive the one-way streets or would know them. I had no idea what he was talking about. I was thinking that he was remembering driving the streets of Toledo, Spain.). "Can only go one-way so it takes a while."
[Then I realized he might have meant the path to the next life.]
He continued, "If you go à pied you can go both ways." [à pied / a pie = on foot]
I said: [in French and then Spanish:] "Si tu est a pied, tu pouvouis marcher. Si tu estas a pie, tu puedes caminar. If you go on foot you can walk (it).... "
I said: "Remember the streets in Toledo, Spain? Very narrow one-way streets. But beautiful. I bet the one-way streets are beautiful there. Are they beautiful?"
Dad went back to sleep and we helped him lay down.
One night the pain meds ran out. Because they'd be one hell of a hot commodity on the market, we weren't given the passcode to set him up with a new bag. It was about midnight. Midnight in the middle of the countryside. The unlucky hospice nurse, who we saw about 4 nights in a row for a bad luck stretch, had to drive 45 minutes to get to us. (This wasn't troubling, because Dad was a DNR - do not resuscitate. It just meant that we would worry that he wouldn't get his pain meds, the machine would continue beeping, and our sleepless night would now be punctuated with more stress.) We paused his pain meds for a bit while we waited on her arrival. When she got there, she had to walk through the instructions to set it up. And while my sister and I stood by her side to help, we were all treated to a message from the other world:
4/7/2011, midnight, Dana Hospice Nurse visiting, squatting at side of bed, working on laptop. Dad just bolted up and with a smile and giddy almost like a schoolgirl, glowing eyes asked each one of us:
"Are you my boyfriend?
Are you my boyfriend?
Who's my boyfriend?
"There's a party. I want to leave this world and go to the party. Can I leave this world and go to the party?"
- My sister and I replied yes. Of course.
Then, he said that there's no water at the party and could we get him some.
He turned to me and said "mamoosh babcrushka with ice" We asked him to clarify because we thought he said with crushed ice. He repeated "mamoosh babcrushka with ice".
Then, he lied back down.
I was simultaneously elated and terrified. When the nurse had finished hooking up the pain meds, we went into the hall and whispered about what just happened. Whispered, because, while my father had suffered from some hearing loss due to flying military airplanes for much of his career, toward the end of life, he could hear a pin drop 2 rooms over.
I started to cry, while smiling. (This actually happened frequently the day after a night shift.) This was an incredibly beautiful and moving moment, but from this night onwards I was constantly afraid that I'd be alone on night duty and have to deal with another spooky communication like that. I also felt more and more sensitive to the creaks in the house, which only happened in his bedroom or in the living room where we slept. I could sense death walking the halls, standing on the porch outside, and hovering in my dad's bedroom.
I don't remember which day we realized that we needed to divide ourselves up. We'd been doing things as the 3 of us: sitting by his side, providing meds, making dinner. We realized at some point, I think his sister suggested it to me and I spoke it aloud to my sister and mom, that it would help us all more if we split up efforts so we weren't wearing ourselves out.
It was around this point, too, that we decided we needed take the counsel: tell your loved one it's okay to let go. Individually, we spent some time with him and said our goodbyes. I told him that I knew we'd known each other in previous lives and that we'd know each other again. I told him that I knew he'd always be with me. I told him that I'd always loved his hands - long, lean fingers with sturdy, flat nails. I told him that I loved him and would always love him. And, I held his hand. And, his glazed eyes shed one small tear out of the left side. And, he said, "L, I love you, too." And, I will always always always carry that.
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Saturday, April 9:
[Mostly written by my mom.] The nights are when the tigers prowl & it's without fail that something goes awry: battery failure of a machine, which was easily changeable thank goodness; pain med bag reached low quantity requiring a midnight visit from a Hospice nurse; a change in port tubes that resulted in an unexpected inability to attach needed nutrients, which resulted in a visit from nurse close to midnight; and his new Foley catheter got plugged because they'd told us it did not need flushing - but I guess they don't know much about NEO bladders - resulting in a nurse called in at 4am to flush and help change bedding and clothing.
Mom wrote, "the girls are my mainstay as night nurses, the resultant days are this:"
Dad is comfortable, without pain, and taking his liquid meds as directed by our Doc. As holding his mouth open with tongue to the roof was cumbersome, we're now holding his lip open and placing into the inside of the cheek. The stomach pump is still running to assist with reducing nausea.
He's not speaking with us, but communicates with his eyes & attentive following of requests - eg to open his mouth so we can swab it out gently to prevent mouth issues.
The days grow longer as sunset is later, the birds are back and calling - we open his window for both fresh air & sounds - however, we know that time has also grown short for us, as a family of four. The best we can do is to keep him comfortable, loved, watched over & be grateful for each little time piece we have.
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Riddle of the time of passing
Me: Dad, we're done with meds. You can rest now.
Dad: I'll rest after the celebration of the sneeze and the golden birthday. After we have dinner. Now, let's get on with this process... (looking at the stomach pump, the pain med pump, the bedside commode, the garbage bin)
Me, searching on Google finding nothing, walking the dogs over their land, thinking and thinking: What's a celebration of a sneeze? "Bless you"... Sunday? ...Who's got a golden birthday in April? My cousin's baby turns 1 year old on 4-10-11, maybe it's a mix up: 1 on 4-11-11?
From the death bed of my father
Dad (looking at the floor between he and my sister, staring off into the distance; as I walk up to his bedside): Look out for the pathway.
Me: Am I on it?
Dad: Almost.
My sister: Am I on it?
Dad: Perhaps.
I think it was over the weekend that we decided, with some thought and little fanfare that we'd remove the TPN. At the time, while I wasn't feeling impatient, I was feeling overly sensitive to my father's pain. If keeping him on TPN was causing him to suffer more, if it prolonged or extended the dying process, it made no sense to me. And I knew this. As a family, we had already talked to each other about the "if we end up in a coma" decision - pull the plug. We had the option to ween him or stop providing it. I was prepared to stop altogether.
I was ready for this because my father was not my father any longer. He was a shell. Once I had said my good-byes, I knew that he was crossing over more and more, and what we were left to do was care for the vessel he had needed and used. We needed to guide it as gently as possible to a still place so he could use the remaining energy and focus to get out of it. Discontinuing TPN allowed the body to chart its own natural course, freeing the spirit from the veiny bonds.
I guess my sister and mom weren't as ready so we decided to ween. That only lasted a day though because no one was interested in staying up one hour later to start the TPN or waking up an hour earlier to stop it. And, the way our brains were working, there wasn't an option to change the process and introduce it during the day.
After we stopped the TPN, his urine output continued steadily, which was shocking in a way. Nothing going in. Why is it coming out? And, oddly, the left kidney was being pinched by a tumor and the right kidney was his bad one, so how on earth was it happening?
He was a skeleton when he died. My sister said he looked like a concentration camp victim. When the nurse came to bathe him again, or when we wanted to freshen him up to prevent bed sores, we would roll him on his side. It was painful for him so I tried to make it light as I leaned over and held his chest, arms, and face to me, "I'm the lucky daughter. I get the special hugs today." But his body was so brittle and bony. I hated that it caused him pain.
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Sunday April 10:
We are grateful for our decision to bring him home under Hospice care, for the comfort that he feels being surrounded by our safe, cozy home & the caring that we have patiently given him.
He sleeps peacefully, calmly and painlessly as Mom, my sister, and I tend to him; Dad's time is now his own to leave when he is ready.
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His friends and family sent so many good words. We read many of them in the beginning, but over time he wasn't interested or refused. I think he was regretful and wanted to hold on. He had been fighting the cancer for so long and was ready to fight more. Just that the cancer, which was made of his own body, had the same will. I think after a time the words hurt him and tied him more to this world, so he refused to hear them. And, they were sweet:
I understand you have filed your flight plan and that the tower has cleared you for take off. This will be your flight of a lifetime and I know that a happy landing awaits. I am so glad to be your friend. Know that we have your "six" and that friendship never ends.
I love you.
Charles Z.
I had night duty on Monday, April 11. I had feared it the Saturday, 9th. But I used the AA mantra "I'm turning it over to you. I'm turning it over to you." And asked my Higher Power for all the strength I could summon to brave the night. Monday night wasn't scary. Death wasn't clamoring. It wasn't a bull impatiently clawing at the dirt. It wasn't haunting. It was, instead, nearby. Death was watching now, with a lazy eye, disinterested with the torment my father's body was facing. Disinterested, but not unaffected.
My sister had slept in his room the night before, in an uncomfortable chair and position. So, I pulled the more comfy chair up, grabbed an ottoman, and propped up next to his bed with a blanket wrapped around me, my hand holding his.
His breathing was more difficult now. And the death rattle increased tremendously. Supposedly it's supposed to be more discomforting to us alive people than to the dying, but I disagree. My father tried with might to sit up a few times to cough it up. And when it bothered him, I hit the pain med button. I hit it as often as I could and sometimes timed the 15-minute intervals so I could preempt the complication. For some reason, at the time, my sister felt negatively about that action and choice of mine, but the hospice nurse the next day indicated it was appropriate to get ahead of the pain. Every 15 minutes. All night. I think it was one of the longest nights of my life. But it meant probably the most of anything in my life.
My sister had the night of April 12. He wasn't as bad. His breathing was still more inconsistent but the rattle had subsided quite a lot from what we hoped was the atropine finally working.
The morning of the 13th, I woke up from the couch and relieved my sister at about 7:30am. I told her to go downstairs to sleep, but she was stubborn and said no. We started the coffee. His breathing was raspy, louder, almost demanding something. The hospice nurse called to check in. We planned to see her in the afternoon. I got on the internet, looking for some good, magic words. A poem perhaps. Something to read to him to help him let go, send him on his way. I stopped at "On Death" by Kahlil Gibran and thought I should read this later on in the day. My mom had woken up, opened the blinds in his bedroom, the sun was soft, bright spring. She opened the window to let the birds' songs in and sat by my dad's side and my sister was on his other side. I put the laptop down and went to the room, and stood at the foot of his bed. My sister stood up and made the motions to cleanse his chi, floating her hands above his body, sweeping, sweeping. I grabbed the stool and sat down, holding his feet, his cold feet, in my hands. The mottling was visible up on his face.
I got up and got my camera - I had been taking photos throughout - and snapped a few. I sat back down on the stool and held his feet. My sister reached her hand across to his chest. His breathing had slowed. We sat in silence, holding him. She reached her hand over to his chest again and felt for a heartbeat. I watched him. In the quickest instance, I saw a light, white swirl like smoke tendrils above his belly. My sister stood up and reached over to his heart again.
We didn't really know what to do. We sat for a few minutes. And then, we decided to call the hospice nurse. As I got up to call, I looked out the window and she was pulling up. She came into the bedroom, listened with the stethoscope. "Are you sure?" I asked her.
She left us and did some work in the kitchen. I closed the bedroom door and created a sacred space, cleansed his chakras, closed the space. Mom decided what he'd wear for the cremation. I took photos. We called the funeral home. The hospice nurse waited. They put him on the gurney, leaving his face uncovered. We followed him out. They lifted him into the hearse (that was a PT Cruiser). We kissed his forehead. The hospice nurse left.
Wednesday, April 13:
One of Dad's go-to sayings was the 7 Ps one: Proper prior planning prevents piss poor performance.
This morning, Mom, my sister, and I each felt compelled to hang out in Dad's room with him a bit before 10am this morning. His breathing had become more shallow, but much less labored and more peaceful. We held his hands and spoke softly to him. The stomach pump was turned off and, with the window open, we could hear the morning birds chirping. He passed at 10:10 (the unofficial time). The hospice nurse arrived at 10:20, unplanned by us three, but Dad had probably arranged it. You know him...
We plan to spend some quiet time today, resting and discussing memorial service plans.
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