Update from Dana

Just a quick update because I know some of you worry when you don't hear anything.

John remains in the hospital this morning because they haven't been able to get his fever under control. He is on several IV antibiotics and now they have added an antifungal but his fever keeps coming back as his dose of Tylenol wears off. They are afraid he has some kind of infection, but frankly, they seem somewhat stumped. Last night they drew blood from his PICC line and more directly from his other arm to see if the source of infection is the PICC line itself. The PICC site has been red and angry looking for more than a week now.

Not to knock our local hospital, but from my perspective, what a difference from Stanford. John is in an isolation room because he is so at risk for infection. When I got there yesterday, both doors (inner and outer) of his room were propped open with garbage cans and soiled linen bins. Why? It seems that they were not able to make his room comfortably warm when the doors were closed so their solution was to prop the doors to the halls open so that the warm air could rush in from the rest of the (presumably germ laden) hospital. No one was bothering to wear masks or gowns. Maintenance people and housekeepers were in and out of the room, while John was there, without washing hands. His neutropenic diet includes things that were forbidden at Stanford (dairy for example) and showers have to be ordered by the doctor. I miss the team of doctors that came in twice a day at Stanford too. John seems to think that standards have changed for neutropenic patients, and doesn't want to ruffle the feathers of the hands that feed him, so to speak, but I am ready to go in there and kick some a** and take some names. I think I already have a reputation there as the grumpy, demanding wife.

Apart from the fever battle, John is battling boredom and depression. I think he is growing tired of all this and his warrior attitude is fading as he endures day after day of discomfort and isolation. I keep reminding him that this is his nadir week (or ten days) and that he is expected to feel better soon. Wednesday is hump day with any luck. I think they will scan the masses next week at some point too, and hopefully, give us some good news to boost our spirits. Meanwhile, I have been passing on your good wishes, reading him your blog comments and his email daily. Both seem to lift his mood a little so thank you, again, to those of you who are taking the time to let us know that you’re thinking of us. Email is probably the best way to reach him right now. He gets it on his phone. His email is jclfiore@gmail.com

If I sound tired and cranky it’s because I am. It is incredibly difficult to see someone you love go through this, and this is not the first time for me. Cancer has shadowed me much of my life. Some of you know I lost my mom to cancer after a 15 year battle about thirty years ago. I am watching my boys going through some of what I experienced back then and it’s bringing it all back to me. I want to try to take care of them too. All this pulling in many directions, lack of sleep, stress, worry, and anxiety are getting to me. I have arranged to take this week off from work, probably a good thing, but I miss my little kiddos already. They are the bright part of my life right now and when I’m with them I forget my troubles for a while. They are in good hands with the trusted teacher that filled in for me two years ago while we were up at Stanford. Thank you, Teri!

OK, so this update has turned out to be not so quick. Our cancer writing coach, Sharon Bray says writing “helps you to make sense of things and to cope more effectively with the emotional roller coaster” that cancer brings. And she would know. So here it is. I’m sorry I don’t have John’s sense of humor about this. I guess we all deal with it in our own way. Some better than others. Hopefully, John will be back writing here soon.

Long, wide turn

Dana again here, typing for John this time. His words:

I’m still in the hospital, it’s Saturday morning. I got here yesterday after an exciting morning, especially for the neighborhood kids getting on the bus as the fire truck and ambulance responded to Dana’s 911 call. Slight fever and chills. Nothing new really, just a reaction to the chemo and a little longer nadir than I had hoped for.

Since my WBCs are at .1 we are really holding back on visitors and since I can’t talk without pain, I’m not really answering the phone, so I am isolated. What else is there to say? Thank you for all your support. Today I will leave you with a poem I wish I’d written because it made Dana cry when she read it to me. It’s from the Writer’s Almanac.

Blackbirds
by Julie Cadwallader Staub

I am 52 years old, and have spent
truly the better part
of my life out-of-doors
but yesterday I heard a new sound above my head
a rustling, ruffling quietness in the spring air

and when I turned my face upward
I saw a flock of blackbirds
rounding a curve I didn't know was there
and the sound was simply all those wings
just feathers against air, against gravity
and such a beautiful winning
the whole flock taking a long, wide turn
as if of one body and one mind.

How do they do that?

Oh if we lived only in human society
with its cruelty and fear
its apathy and exhaustion
what a puny existence that would be

but instead we live and move and have our being
here, in this curving and soaring world
so that when, every now and then, mercy and tenderness triumph in our lives
and when, even more rarely, we manage to unite and move together
toward a common good,

and can think to ourselves:

ah yes, this is how it's meant to be.

Update from Dana

Well, John gave us all a good scare this morning. He woke up with a slight temp. I called the doctor and he told me to bring John in to the ER. His white blood cell count is way down (not unexpected for nadir) and he is just too fragile to risk messing around with any kind of infection.

As we were preparing to leave, John was at the sink about to rinse his mouth and said he suddenly didn't feel well. I shadowed him for a few seconds around the kitchen asking him if he wanted to sit down but he was not responding. Then I noticed that his eyes had rolled back in his head and I told his brother, Frankie, standing behind him, that I thought he was going to collapse and we should try to get him to the couch. At that moment he did collapse but Frankie was able to break his fall. We got him about half way to the couch but decided to just lay him down and get his legs up and then I called 911.

He was coming around when the firefighters got here (just a couple of minutes) and the ambulance arrived shortly after that. He was taken in ambulance to the hospital where he seemed to rally as soon as he got some fluids in him. We think he may have been dehydrated. He hasn't been able to swallow without a lot of pain so he hasn't been able to eat or drink much. He was in the hospital yesterday getting platelets and got IV fluids, but I guess the fever can dehydrate you quickly and this may be what happened. We all had a scary moment though, and I think poor Mikey got a reality check on how serious his dad's condition is. I called young John from the hospital and he and his girlfriend, Laura, left the bay area almost immediately and are here now.

John was admitted back into the hospital after almost six hours in the ER this morning. He is getting IV antibiotics and fluids. He is very at risk for infection, so really shouldn't have visitors, but they said that barring something else developing, he may be able to come home again after 48 hours. He has a private room this time which he is happy about but he is not happy to be back in the hospital.

His brother, Frank, had to leave today. Thank you, Frankie, for all your help this week! I have arranged to take next week off at this point but we are really just taking it an hour at a time. I know he has lots of people pulling for him out there, some not too shy to leave a comment, so thank you all. I will try to keep you updated and I wouldn't be surprised if he is able to pound out an entry for you over the next couple of days. Keep a good thought for us.
Dana

Hah, no pain!

I love pain, if I wasn't in pain I would think I was dead. If you can think, 'Am I dead?', can you be? Who among us over 50, 45 even, doesn't wake with some pain?

I am at the low point of the chemo, blood counts are in the toilet, I have to wear the mask outside the house so I am not going out until this afternoon's doctor visit. There I will get another shot of neupogen, to promote blood growth, and a blood test. I have been in some state of advancing mucositis since the chemo slam last week, and this morning my tongue has joined my cheek walls in hailing the armies of all wars as they march through my mouth and take up positions on my lips. They never get much chance in war to trim their toenails.

Anemia is also present, and I bet could bleed pretty good if need be. So I am peachy, love waking up every day knowing it should get better, or not. I guess it's just the waking that surprises me. Thanks for all the blog support, and I don't know if there is a limit, Pat. Does each letter on the screen add to the weight of the earth?

I am in a very discombobulated state. My in-laws and neighbor had an opportunity to move my stuff from my bachelor pad this past weekend, so they did, and I really appreciate the time and effort they made. Given my current state I don't know how I would have gotten it done.
Now I am looking at this pile of stuff in my garage that needs a place, and all the places are taken. I get tired just thinking about it. It all used to fit in here, but life hates empty space.

This whole situation is stressful for Dana, working and taking care of me and worrying about me, so my brother Frank drove out from New Mexico to help out, what a guy. He cleaned out the jammed up gutter, and did dishes, and all kinds of other useful chores. He took Woody to the vet today for some work, and is out getting tires on my car right now. Tomorrow we (he) will get Mike's Honda in to check an exhaust system trouble light.

I kind of wish my body would work like all the mechanical systems around me. I complain that I fix one thing and another breaks, but at least I am at just one thing not working. With my body, they just pile on. That's all I have.

Oar What?

I remember one time I was in the back of the canoe, paddling through the Great Swamp with Sandy, an old girlfriend from college, and I was looking behind us for some reason. Just as I faced forward, a low-hanging branch swept me from the canoe, and I tumbled backwards into the slow-running water. I came up spluttering and Sandy retrieved me, giggling.

I am equally surprised to find myself still in the hospital on Saturday. I got out of the hospital on Thursday morning, and Stacy was kind enough to retrieve me and bring me to Wavertree. I have been very chilled a lot lately, and figure that chill is just from my challenged metabolism. Stacy comes back with these awesome oatmeal/chocolate chip cookies, which are a little too crisp for me to eat robustly – I can nibble them. I head to bed and wrap up in a pile of blankets. When Dana gets home around 4pm, she adds the electric blanket. She heads to the pharmacy to pick up some meds, and I wander downstairs with a blanket wrapped around me.

I trip over the blanket near the bottom of the stairs, and end up in a jumble on the living room floor. It takes me a long time to get up – I am very weak. I stumble into the family room and fall again. Woody, my dog, is no help. I get up and get on the couch, and Dana takes my temp when she returns, and it is 102.8, She calls the doc, who sends me to the ER. Dana gets Craig next door to help me into the car, ER checks me out and checks me in, and here I remain.

I am alone in this room, just as well since my counts are plunging, as expected from the chemo. Yesterday I was in a funk all day, low-grade fever and no energy, oh woe is me. I feel better today, having gotten my peeing routine down as they flush the chemo with non-stop IVs of saline. I pee every forty-five minutes, whether I have to or not. I saw the Doc last night, and he scheduled an ultrasound, wants a peek into my gut. So no liquids after midnight, and I finally get the ultrasound at 9:30, even thought there is nobody ahead of me,

When I finally get breakfast, the Belgian waffles have been tossed. The mucositis is ramping up, and my lips and inside my mouth are pretty busted up, so I get Rice Krispies for breakfast. It was not as bad as it sounds, I just let them soak in the milk for 5 minutes until they were nice and soggy, and let the coffee cool for half an hour And lo and behold, I have an older style TV in the room, with a lengthier boom but no number pad. It’s not in my face, but to get to channel 72 from channel 4, you hit channel up 68 times. That comment about ‘A Clockwork Orange’ is strange as I just watched that 2 weeks ago for the first time in decades. Is that why I am here?

The Celtics managed a win last night in spite of the refs and Kendrick, so all is well. I hope to be out of here tomorrow. They are continuing to dose me with antibiotics in IVs, and my temp is 97.6, normal for me, I am so cool. Dana and her sisters came by this morning, Barry also, and Dana will come by later to trounce me again in Gin. I keep changing the rules as long as she leaves the Hoyle’s Book of Rules behind, but I am zigging when she is zagging, so ……

Here is a poem Sharon Bray of ‘Writing Through Cancer’ emailed me. She has been a great mentor and supporter through this.

How to Read a Poem: Beginner's Manual
by Pamela Spiro Wagner
First, forget everything you have learned,
that poetry is difficult,
that it cannot be appreciated by the likes of you,
with your high school equivalency diploma,
your steel-tipped boots,
or your white-collar misunderstandings.
Do not assume meanings hidden from you:
the best poems mean what they say and say it.
To read poetry requires only courage
enough to leap from the edge
and trust.
Treat a poem like dirt,
humus rich and heavy from the garden.
Later it will become the fat tomatoes
and golden squash piled high upon your kitchen table.
Poetry demands surrender,
language saying what is true,
doing holy things to the ordinary.
Read just one poem a day.
Someday a book of poems may open in your hands
like a daffodil offering its cup
to the sun.
When you can name five poets
without including Bob Dylan,
when you exceed your quota
and don't even notice,
close this manual.

Life on Earth

I have a new cellie, and he is a fellow BMTer from Stanford. Our blogs were passing in the night at Stanford, and now I’ve finally met Curt in the worst of circumstances. Life is so strange!

I had a pretty good night’s sleep, after taking 10mg of Ambien at 9pm. Was awakened a few times, for a writing sample and dose of cytarabine at 2am, and vitals at least once. Ambien helps make it unclear. When I woke up at 7 am I felt like I’d been on a bender, big headache, and the inside of my mouth announced that I’d had cytarabine and methotrexate. The raging mucositis is back. I ate my egg and cheese biscuit very gingerly, and left everything else but the juice. Doc came to see me and ordered up some steroid wash for my mouth, and another wash, and my mouth was back to normal in no time.

It’s 2:30pm right now, and I just started the third of the four cytarabine doses, with the last coming tomorrow at 2 am. That will finish at 4 am, then a dose of neupogen to bolster my blood, then I go home. I can expect to hit nadir, the low point, the pits, on Tuesday. My blood counts will drop to the floor, and I will be anemic and neutropenic, back on the mask outside the house. I can expect to slowly recover, and then come right back to this spot for the same treatment in 2-3 weeks.

Somehow in my enfeebled mind I had this idea that I would come in here, get the slam, and then either be miraculously cured or dead. But, we must play out every little battle, all the soldiers get a chance to fire off their guns, circle the wagons, batten down the hatches, fix bayonets, right wheel and charge! Nothing is simple. So fine, I am adjusting my thinking to the longer term.

Watching my old cellie and watching his rookie moves, I realize how prepared I really am for this bizarre environment, even though I made a few mistakes. I am prepared with my bag of stuff, things like an extension cord. The one thing I am trying to get used to is sharing a room, trying to tune out what is going on next door, focusing on my own stuff.

They have these nice TVs for each room that swing out on a boom, individual for each bed, and you plug your headphones in and enter your own world. However, the engineers that designed the system made the boom so short that if you sit up in bed and swing the TV in front of you, it is 6” from your face. You end up swinging it to the side, and turning your neck to watch TV. I had a stiff neck after the Celtics game last night. Why don’t they consult me before they do this stuff?

Hey Manitouboo, I think the drug that caused the nerve damage is vincristine, and I have very minor neuropathy from that, just enough that I am a klutz and blame the dropping of things on the vincristine. It may be that cytarabine does this also, but I don’t recall that. The writing samples are because the cytarabine can effect fine motor control by impacting the brain. And here are the pants; I wore superheroes yesterday.

Thankfully I do not see a white hat, or any other stool collector, unless Dana is here. She has been trying to find the right stools for the kitchen for years, so there are a few in the garage. And on a really positive note regarding stools, I was finally able to find a quiet moment here in the Valentine suite this morning and came out with a nice melodic Nat Adderley tune.

Roger R. came by to visit yesterday, man he looks good, doing triathlons and working out and staying in great shape. It was great to see him, and then my brother from another mother Barry came by, and today Drew W. visited, and then sister from another mother Stacy, and Dana came by for lunch, so lots of action.

Thanks for those strong sentiments, Anonymous, I just read them as I was finishing this up. I know there are silent supporters out there, members of my karass like Bill and you, and I feel all your hands lifting me up. Sometimes I see my spirit as the beautiful wooden canoe in ‘Deliverance,’ watching that canoe going down the river and knowing that it cannot make it through the rapids, that it will snap in half when it goes over the falls. Other times I am the uglier but more hardy aluminum canoe, dinged to hell, heavy, clumsier, but able to last. I have the 16’ version of that canoe, the OTCA. I think it was an OTCA 18 in the movie. The OTCA now sells for $7,800 from Old Town.

I chose for the sentence I had to write before cytarabine –
‘Hope is the thing with feathers,
that perches in the soul,
and knows the tune without the words,’
which is a misquote by me of Emily Dickinson’s poem ‘Hope.’ It should be ‘sings’ not ‘knows.’ I just hope it is not an omen that I screwed up ‘Hope.’ Yikes.

I will go back to Wavertree tomorrow, needing the loving and tender care of Dana as I sink into darkness. Since I slept well, I do not have a good bleak poem or thought to share with you. Life goes on, oh-bla-di.

Hey, update, I am back at Wavertree, just got here, good to be here. I am going to head for the couch and watch season 2 of 'Breaking Bad.' Guess what I am pondering?

Sleepless Valentines

It’s 8:45 am, and I am hanging in my cell at French Hospital with my cellie Tom. I am by the window, he is by the door, and we have had our breakfast, French toast and sausage, pretty good but a little spicy if you have mucositis. Also, apple juice and coffee. We both slept badly, interrupted every twenty minutes or so for one reason or another, just often enough that we (at least I) couldn’t get past the whirring and clicking of the IV pumps (very timely comment by Manitoubou on the last post.) Tom had a knee replaced yesterday morning and has some pain, and I am peeing a lot from all this hydration. I asked for an Ambien, but my Doc hadn’t ordered it, so they gave me a Benadryl. I was not kept awake by sneezing. We have formed a yard gang, the Valentine Dudes, since we are in room 214. The tattooist is coming by later to get our colors inked on.

It’s raining pretty good on and off, and my windows seat is a little cool, both in view and in venting. As soon as cellie Tom leaves for physical therapy, in a minute or two, I will try for my daily constitutional. Every time I share a room in a hospital, the bathroom is right by the other guy’s bed, and his guests will be sitting in chairs just outside the bathroom door. Yesterday I just drove them all out with some ‘Reveille’ on my bugle, followed up with ‘Charge!’ They did not return until ‘Taps.’

Dang, they all just left for Tom’s PT, and now the nurses have moved in to change his bed. I am left here wishing for 5 minutes of privacy. Why do I always end up blogging about the hospital bathroom experience? Dang, they all returned from PT just as the nurses finished the bed, so I am breaking out the bugle. I am considering doing a Miles Davis jazz riff.

I came in yesterday morning and was getting a PICC line put in by 8:30am. I blew it and let them go with the right arm, without considering which side the IV pole would be at. Of course, I hadn’t seen the room yet, but still, an old pro like me should’ve known which questions to ask. Doh! Now I have IV lines across my body, and have to be a little more careful when I move.

Anyway, I have been sucking down 2000 mg of methotrexate since yesterday about 1pm, and I will finish around 11am. Just like old times, except 50 times more in one dose. No nausea, no side effects, but the best is yet to come. After the methotrexate they will hit me with the cytarabine, in pulsed doses over the next 2 days. I have to give them a handwriting sample before the first pulse of cytarabine, as a baseline sample. After each pulse they will get another sample, and if I start writing like a doctor, that’s bad. If I start writing like Hemingway, that’s worse, and if I start writing like Nietzsche, I turned German.

It’s funny but once I get in the hospital my whole mood elevates a little. Maybe it’s because I feel like I am doing something to battle this disease, maybe it’s just that I get in this scrappy mode, still wanting to live and to prove I am a tough guy. I still don’t like the crazy idea that people are best served when in their lowest of times by sharing their living space with total strangers, but I’ve harped on that before, so I let it go now.

Unfortunately, when you lie sleepless in the night in the hospital, that is when it all seems the most hopeless. I actually had to add planning my funeral to my to-do list in my brain! I remember having to go do this planning with my brother when my father died, or maybe we were just finalizing it, I don’t clearly remember because I wasn’t all there when it happened. I don’t want Dana to have to do this when the time comes.

To Do List

It’s a lot of work,
getting ready to die.
I don’t want to leave a big mess
for my loved ones to clean up.
Sorry enough the troubles I left
in their minds, all those bad memories,
like stacks of 33s and videotapes that
got wet in the flood, warped and
smelling of rot and earwigs.
They have digital copies but can’t shed the
old records, just in case.
I go through my things and fill the boxes-
Goodwill, Give Away, Garbage.
My buddy gets this pile,
sell the gym, who wants this desk,
get tires on the car,
write a maintenance schedule,
fix the refrigerator,
where is the living will,
where is the last will and testament,
are the bank records straight,
is the bill-paying routine clear?
And then I think, ‘What about
my remains, my funeral, I don’t want
to add a gritty pile of ash and bone
to the soggy messes
in the basements of those I love,
to the warped vinyl and the moldy papers.
Will I need special handling
because of all the chemo?
What can I do to save my love
from all the damage I’ve wrought?
I don’t have time,
I need more time,
please let me pile up
a little more time.

Of Mice and Men

Friends and family, we are moving right along here, so just to let this accursed leukemia know that we have taken notice of its presence, we are firing a big dose of chemo right into its gut (actually my gut). On Monday, bright and early, I will check into French Hospital right here in SLO, get a PICC line inserted, and then take in a big dose of methotrexate for two days. Starting Tuesday, I will take in a dose of cytarabine for two days. I will leave the hospital on Thursday, whistling some Satchmo song and walking crookedly, F*&)&%#ing hip.

I was on methotrexate for 2 years from ’05-‘07, daily, but only 40mg/day in a pill. This will be something like 2000mg injected. They also injected methotrexate into my spine with those lumbar punctures many times. Hmmm, is that coming? I also had both methotrexate and cytarabine during the induction phase, in February ’05 and in July ’08. The big difference this time is the dosages are huge.

And who can forget the PICC (peripherally inserted cardiac catheter) line, put in there so that my veins don’t get dissolved by the chemo. Instead, the chemo blasts right into the heart and is diluted enough to not burn through my tissue. Who thinks up this stuff? There is pic of a PICC back in '05, at http://johnsleukemia.blogspot.com/2005/02/guided-imagery-i-am-board.html.

I am feeling all sorts of pains in my gut and back, and some good headaches, which makes me nervous. Leukemia likes to hide in the brain, which is why they do those lumbar punctures with methotrexate. I have been doing a bunch of PC work, so is that why I have headaches? Has psychosomosis snuck in through osmosis? Is all this pain just a function of my brain? Can I restrain from another refrain, or should I maintain with this quatrain? I sense a bad poem coming, or was that it?

So, I am very cheered by the news that we have some heavy artillery to bring to the field. Unfortunately, there are no clinical trials involving chocolate and Italian food, nor any other stuff for that matter. Since most people don’t get a third shot at ALL, after living through a bone marrow transplant, there probably isn’t much call for killing mice with new drugs.

Speaking of mice, I was having a time with the mice here, scratching around at night, adding to my sleepless moments. I thought they were trying to get in, and sealed the only point of entry I could find, and then I would find wallboard dust on the floor where the sealed hole was. They were already in, and trying to get out! I made the mistake of leaving a few Cheese Nips in a bowl on the counter, and in the morning they were gone, with some crumby evidence on the counter. I found mouse turds on the counter and the floor.

The next night I heard noises in my oven. I leapt out of bed, but couldn’t find any mice. In the morning I tipped up the stovetop, and found party central, Cheese Nip crumbs, turds, pee. Great, in the stove. I cleaned the whole mess, and disinfected everything. Later I moved the recycling bins, and found more mouse evidence. I moved the refrigerator out, and found the mouse version of Studio 54. More major cleaning, but still the question remained – how were they getting in?

I did not want to damage my karma any further, so I got a couple of live traps and baited them with peanut butter. The mice went in, ate the peanut butter, left a thank you note, and left (me wondering how they did it.) So, karma be damned, I set the snap trap and SNAP! Now there are three dead mice, my house is super-clean, and I have a hole in my karma. I felt bad, they were just being mice, and so I had to find the point of ingress.

Then I looked under the bathroom sink, and discovered the mice loved my vanity drawers. What a pain cleaning that whole mess. But this showed me their way, the tiny gap where the pipes came in under the sink. I got a can of expanding insulating foam and squirted some into the gap, and the mouse problem is solved. I tried some of that foam on the hole in karma, but no luck. I will take some down and outer out for a sandwich, maybe that will do it.

I told my landlord today that I had to leave in thirty days, and he was very understanding. I will begin the process of emptying this place today, reclaiming space in the garage at Wavertree, selling off the furniture I bought, slowly moving a carload at a time and culminating in a Uhaul and a little help from my friends.

Thank you everyone for your comments. When I started editing the blog into a book, it was over 1000 pages with pics and comments. If you ever read “Moby Dick” or “Look Homeward Angel” you can appreciate that I want to boil this down to the thick sauce. Maybe if I just drop all the vowels I cld gt t dwn t 250 pgs. Myb nt.

I love the idea of getting the Jade fountain done, it’s been in my head for years, and it might last long enough for my grandkids to break. My bucket list is a mess, because there is all this stuff I have to get done to ease the burden for those still toiling in the mortal portal, huh? Anyway, the other problem is that I am a physical mess, so I can’t get tubed, let alone go surfing, so that’s out.

I love the Writer’s Almanac, and have it delivered by email everyday. I can’t believe you did that, Pat K., but what the heck! Poor Garrison must be swarmed with poems. Janice and Craig, thanks for the offer, I may need some help in the end, not sure yet. And Cindy, I wish could come to Jamaica, but I think the travel ban is going to limit my bucket list. I have that same weird thing where I remember some plants in the latin. Insects too. And then I blurt them out like I know something, and get this look from Dana that says ‘Shhh, don’t be an ass.’ Leptinotarsa undecimpunctata, Liriodendron tulipifera, Cedrus atlantica ‘Glauca’. Shhh.

And thanks for all the positive juju flowing my way, send white blood cells too!

Today's Writer's Almanac Poem:

Vigil
by Dennis O'Driscoll

Life is too short to sleep through.
Stay up late, wait until the sea of traffic ebbs,
until noise has drained from the world
like blood from the cheeks of the full moon.
Everyone else around you has succumbed:
they lie like tranquillised pets on a vet's table;
they languish on hospital trolleys and friends' couches,
on iron beds in hostels for the homeless,
under feather duvets at tourist B&Bs.
The radio, devoid of listeners to confide in,
turns repetitious. You are your own voice-over.
You are alone in the bone-weary tower
of your bleary-eyed, blinking lighthouse,
watching the spillage of tide on the shingle inlet.
You are the single-minded one who hears
time shaking from the clock's fingertips
like drops, who watches its hands
chop years into diced seconds,
who knows that when the church bell
tolls at 2 or 3 it tolls unmistakably for you.
You are the sole hand on deck when
temperatures plummet and the hull
of an iceberg is jostling for prominence.
Your confidential number is the life-line
where the sedated long-distance voices
of despair hold out muzzily for an answer.
You are the emergency services' driver
ready to dive into action at the first
warning signs of birth or death.
You spot the crack in night's façade
even before the red-eyed businessman
on look-out from his transatlantic seat.
You are the only reliable witness to when
the light is separated from the darkness,
who has learned to see the dark in its true
colours, who has not squandered your life.

Field dependent

We just came from the doctor’s office, so I want to relate the latest info. The CT scan I had last week shows no change. The masses are the same size. This means the doctor will come up with a chemotherapy plan by the end of the week. We probably need some new chemos, so he will work with Stanford to see what is available, including clinical trials. I may have to go back to Stanford, either in hospital or outpatient.

We will not pursue donor leukocyte infusion until those masses in my pancreas are very reduced. My best hope right now is for a clinical trial that involves chocolate and italian food, with a side of mahi mahi, not necessarily all at once. If nothing at all happens, or chemo cannot arrest the progress of this disease, the Irish wake is planned for some time in October or so. I would like to be there, listening to you all say what a great guy I was, but every one I have suggested this to (having a wake before I die) said it would be quite weird and uncomfortable. Cowards.

All this leaves me with a lot of work to get done. Do I finish turning the blog into a book? Keep going on the genealogy project? Make the jade fountain I always said I would make? I know I have to make all the finances very straightforward, and finish my appeal with Social Security.

I will most likely move back in with my family. Dana and I have been working things out, and I love her, and she loves me, and she is very supportive and knows that I will need her support. Moving back in will be a big job, but I will just take my time. Time to shed some things, too.

It occurs to me that it would be so much easier if I knew we had no hope and how much time exactly I had, but of course there is a glimmer of hope and I am prepared to dash through the eye of the needle, again. None of us knows how much time we have, and it highlights to me just how important every day is, how important it is to tell my family that I love them, to pet my dog and throw the ball with him, and to appreciate the beauty all around me.

Dana and I went out to the east of Santa Margarita last Thursday, to Shell Creek Road, where the wildflowers were having their annual show, spectacular this year after the rains. We had a little picnic and basked in the glory of living.

I wrote this a few weeks ago, in a bleak mood, based on the weekly prompt (stranded) from Writing Through Cancer:

Empty

Vision’s getting blurry,
skin like dry cracked paper,
random pains are flaring up
in my abdomen and joints as my body
consumes itself in a fight for life.
Stranded in nowhere, rocks and sky and
scrub, rapidly fading now,
only fumes in my tank,
nothing in the bank, raided and
traded for this long shot at life and love,
for hands to ease me down,
a rock for a pillow and sand
for a blanket,
and the vultures overhead like a ceiling fan,
shade, blaze, blaze,
shade, blaze, blaze.
Relentless, relentless,
comforted that we all die,
it had to happen,
this too shall pass.
Why be thankful for the pain,
just to know there is life yet?
The accounts are drained,
the tank is empty,
and I’m stranded between
living and dying.

Cha-Ching

What a golden time we had in Las Vegas! We had a great room in Paris Hotel, beautiful views, and our package included continental breakfasts from 7-11 and drinks and appetizers from 5-8. The breakfast was bagels, lox, cream cheese, onions and capers, watermelon, cantaloupe and honeydew, croissants and pastries, yogurt and granola, teas, coffees and juices, just about everything except bacon and eggs. The appetizers at night included mini-sandwiches, pastas, empanadas, and everyone was pouring themselves big stiff drinks to start their night.


We checked out the new City Center on Thursday, which MGM bought after Dubai decided they'd had enough. Pretty nice hotels and casinos, high end, and architecture reminiscent of Gehry in Bilbao.

Here I am getting rubbed out.





Thursday night we went to Palazzo to see ‘The Jersey Boys,’ but BestofVegas.com muffed our order. After an hour on the phone, I got it straightened out, and we had two premium tickets waiting for us at will call. We spent the night frittering away dollars at the slots. We never did win, but we didn’t lose much, less than planned, and we had a good time.


We rented a Mustang convertible for the last two days, so Friday we drove out to Red Rock Canyon and had a picnic.











At one of the overlooks we were by ourselves, and 'Kiss' by Prince came on, and next thing you know we are boogeying down, radio blaring, golden!







Friday night we saw a comedy act that was pretty funny. The venue was shoddy, and we had front row seats in the VIP section (Very Insultable People), but luckily there was a big baby-faced guy sitting next to me, and he was the chosen foil. Front-row seats are not what they’re cracked up to be, because you are straining your neck to see.

Saturday we drove out to the Pinball Hall of Fame, a big hall filled with machines from all the eras of arcades. We played a few of the old classics, and some of the newer styles, Dana held her own while exclaiming ‘Ohh!’ repeatedly, and all at a cost of $10. We probably saved $100 by not gambling. We then drove downtown and gambled a bit at some of the older casinos, the ones with lower limits and better odds. No comment.

Back to the Palazzo for ‘The Jersey Boys,’ and we had tenth row center seats, perfect. The show was fabulous. It is the story of Frankie Valli and the Four Seasons, music slightly before my time, but most of the songs were very familiar. The show was great, the guy playing Frankie Valli was voted best singer in Vegas, a very crisp production. We had some drinks in the nightclub, and then drove off-strip to dinner at Envy, a noted steakhouse. Dinner was excellent, and after dinner we cruised up and down the Strip with the top down and rock and roll blaring from our radio. We were voted the ‘Coolest Cruisers’ by Las Vegas Review, capping off a great last evening in Vegas.

The most important thing for me on this trip was that Dana and I reconnected in some ways, and I feel hopeful that the future includes our relationship. It was also important for me to have a good time without the travel angst I often carried around, and I succeeded to some extent.




When we got back, lovely Lia had an Easter dinner of roast lamb ewe could die for, scalloped potatoes from Eden, and asparagus spears on a bed of angels and baby hair. Mmmm, delicious, and so beautiful it was difficult to eat.

I will get a CT scan on Thursday to see if the reduction in immunosuppression is having any effect, reducing the leukemic masses in my pancreas. I do feel slightly more anemic, sleeping a little more, not much energy. Press on.


Poem I wrote called

Flea Market in My Head

The full moon charges up the sky,
lands right in my eye,
and I think, ‘Where am I?’
Then I sense my being,
my pains, my scraping hip sending
groans out of me,
my swollen gut, cramped and gassy,
the aches in my back from my misfiring pancreas,
and I realize I am still alive.
In full moonlight, I give thanks
for another day, for family
and love and friends and doctors.
I try not to count the days remaining,
who knows anyway, miracles happen,
and once that starts my mind is
a flea market, and once inside I am
jumping from booth to booth.
I am at Rocky Hill flea market, and the flea market in Monastiraki in Athens,
and the Rastro in Madrid,
and the big one outside Valencia,
and the one in Malaga with all the African stuff,
and I am searching all the booths
for that special something,
cheap tools, organic vegetables, drums that smell bad,
antiques, the love of a woman,
local jewelry, counterfeit brand name clothing,
around I go, did I pay Mastercard,
how should I have played those pocket Jacks,
can the Celtics still win?
The moon stares me down and charges me up,
around the market I go,
doughboys covered in confectionary sugar like
Jonathan Winter’s hair, caramel apples that can
take out your fillings and remove crowns,
is my Mom alright,
fried snickers, kettle corn, bad bad things,
what does it matter, they can’t kill me.
Booths filled with cheap CDs, old vinyls,
racks of mystery novels, Harlot’s Kin romances,
what is that thing on the dog,
titillation, porn mags if you’re bold enough to ask.
Inside my head it all swirls around,
can’t be stopped, the earth is a big spinning flea market,
and I am drawn into booths that have what I need,
what I love, old broken-down things,
who knows what they were used for when complete,
but they could not be discarded,
someone might want them, they are here to
swirl around my brain,
to glisten in the moonglow, to ride a beam
into my eye, into my head.
In my brain I am hoarding things,
I am moon-addled, making piles in the
corridors of my mind, stacks of National Geographics and
New Yorkers, I love the cartoons,
did I lock the car, what is that scraping noise,
is that a mouse, I am
making piles of memories
and images and moments and faces and voices,
and I worry that if there was a fire in my brain,
could I get out, or would I
trip on a ferry ride to Greece, or over that dog Chip
we had for a few weeks,
would I burn up in the fire of my swirling mind,
and the moon won’t let go, so I
get up and make some tea and browse
the flea market in my head
until the sun finally comes up and
I start another day.

Dang it, I'm back

Dear blog readers, I am sorry to say that I have to now reopen the blog, and rename it again. This is like an episode from the Twilight Zone - twice I have entered the ‘final’ blog post, and each time I have relapsed within a few months. In other words, I have relapsed again! Three strikes and you’re out! Third time is a charm! Third on a match gets pregnant! Three’s a crowd!

I was supposed to be getting my hip replaced around March 22, and in preparation we did a bone density scan. My bone density is fine, but some gray areas were seen in and around my pancreas. Ultrasound showed these to be 2 masses in my pancreas and a third in my kidney. The largest, in my pancreas, is the size of a small potato, about 3”x2.5”x1.5”, and not as tasty. CT scan showed it even better, and a taste test proved that a potato is a better baker.

A biopsy of the mass in the pancreas showed this to be made of leukemic cells, and the assumption is the other 2 masses are also leukemic cells. We followed up with a bone marrow biopsy last Wednesday, and I received the news Monday that there are leukemic cells in my bone marrow, but in very small quantities. My blood tests have not changed, with slight anemia and no other abnormalities.

So, the leukemia is back in spite of a successful BMT. It is back in an abnormal way, but it is back. Grrrrrrr, give me a break, this isn’t fair, where is God?, etc. etc. As much as I tried, all the ranting and raving and tears and wailing and gnashing of teeth won’t change anything.

The action plan is as follows: Stop the prednisone immediately, and cut the prograf to 1mg every other day. This should allow the immune system to fight harder and hopefully kill this cancer attack. The minor graft v. host I have had for over a year was not a good thing, after all, so we need to stir up this immune system into attack mode. Chances of this succeeding are not that good, but it could happen.

In ten days we do another CT scan to see if the masses are shrinking. If so, great. If not, we move on to chemotherapy. You know me, I love some red death and numb me up. Actually, I may get new stuff, as I may have reached my lifetime amounts of the old chemos. Seems odd that they'd worry about that, just give me what works best. Additionally we may want to harvest leukocytes (WBCs) from Lisa and transfuse them into me, for an extra boost of cancer fighters, henceforth called DLI (donor leukocyte infusion). The docs are also looking into clinical trials.

My body is responding either psychosomatically or for real, with backaches, joint pain, stomachaches and lightheadedness. I am chilled a lot, and my #$%@^ing hip is killing me, but that is not getting replaced any time soon, and I limp on. I walk around like I am drunk, careening into things.

So fellow wanderers, here we go again. Needless to say, I am shattered by this news, and worrying how much is left in my tank of will and positivity. I am trying not to dwell on this, and mostly succeeding. In the back of my mind I am developing a bucket list, but you didn’t hear that and I didn’t say it, that is too gloomy a thought. We all will die, I am ok with that, but I thought I went through some agony to gain ten more years, won that bet, and now feel shorted.

To add to this, the Social Security people sent me a notice that they had overpaid me, and to please send them a check for $85,000 in 30 days. I filed my appeal Monday morning. Since I am feeling so lucky these days, Dana and I are going to Las Vegas for the anniversary trip we didn’t take last November. We’re leaving today and coming back Sunday. I have a plan to drop $85K on black at the roulette wheel, and see what happens. Wish me luck!

Peace Out

It’s been a long time since I posted, and this will be the last post of Holy Cow. There may be some new blog coming, I don’t know. So much has happened since the last post. I will try to be brief and kind.

First, my health is OK, I went to Stanford yesterday to see my BMT doctor, specifically to see how he felt about me getting a hip replacement. He told me about 50% of long-term steroid users suffer bone loss and need joints replaced, and he encouraged me to get a MRI and see if the hip is fractured; he thought it probably was. He also recommended the bone loss medications – Fossamax, Citrical, and vitamin D. I am an old lady. My blood pressure continues to run high, and he wants me to go on medications to lower that. I probably should cut back on the 5 cups of coffee I am drinking first, and see what that does. It is the only drug addiction I have left, so I am scared.

Right around our 24th anniversary, November 23, Dana and I decided we needed a separation for a time, a ‘trial’ separation, so I no longer live at Wavertree, I now live in a very serene place on the outskirts of SLO, with a 5-acre field out my front (only) door, nice views in every direction from every room, a nice garden, 3 quiet and studious students as neighbors, lots of critters, and beautiful sunrises and sunsets. Great place to think and ponder and write, and that’s what I am doing.


My front yard









Typical sunrise








I am working on my serenity, my quietness, muting my trumpet, and I am delving into my Tao. I am taking Tai Chi, and Pilates, and volunteering in a few places. I have gone to some poetry readings and shared some of the stuff I have written lately. I spend an hour each morning writing, whatever pops out, and I have a number of projects I need to get going on once I finish the office this weekend. I have internet only through a Droid phone, and that is a pain at times, and I am struggling to put together a decent PC.

Settling into another house took a lot of work, been at it since Dec. 20 and it’s just about done. I was a vagabond for a few weeks in early Dec. - thank you Lia for the use of your house. Life is serene.

Gutted

When they tore me apart,
look what fell out,
green fields and hills,
pink skies, dog fur and
womens’ rounded butts,
hair and teeth and old sutures,
benign cysts, red death,
an Ipod and old hiking shoes,
bad poems and cowboy music,
stale and moldy love,
misplaced blame, lost trust.


All of Us

Been through it all now,
been through some anyhow.
Compressed, indented, insulted,
infuriated, enraged, encaged.
Poked, prodded, tested,
abused, teased, squeezed, diseased.
Ejected, rejected, selected, disinfected.
Gloved and loved, hugged and bugged
Body burned and broken, drowned, irradiated,
parts falling out, poisons pouring in,
my own Three Mile Island,
Chernobyl, Bhopal,
Think global act local.
I tamped down the fear, the pain, the anger, the memory,
to cope, to hope?
To feed my ego, my addiction, my inferno.

Been through it all now that
you cracked the egg
of my comfort,
spilled the stuffing of love
from my pillow, tossed
me out of bed.
I flailed in the yolk of my sins,
bits of feather and shell stuck
to my knees and elbows as I crawl
from the wreckage and the fire, back from Hell.
Am I Lazarus, or the Phoenix, or Sisyphus?
Or just not here, not now?

Dispose-All Pain

The dispose-all is broken,
so the dregs and sins of my cooking,
egg shells, celery ends, burnt toast,
apple cores and carrot tops,
are piling up in a bowl on the countertop.
The ill-fitting lid doesn’t hold back the decay
while they wait to be buried.
The fruit flies have found it,
and fly in my face to thank me.

It’s like Haiti in this bowl.
I don’t have a lid that fits,
and the dispose-all is broken.
I have to see the refuse,
can’t just flush it away,
get it out of sight.
They are cutting off
limbs like carrot tops
and celery ends, no anesthesia.
Do the carrots cry out in pain
in a language I don’t understand,
or I just can’t hear them?
I empty the bowl into a hole
I dig in the yard,
and go to the store
for a new dispose-all.

Burrito of Love

All those tragic love songs,
poems about broken hearts,
true loves torn asunder –
their tears cover the earth.
I fold them all into a
giant burrito of love for you,
rice and beans to show how
I’m stuck on you,
cheeses and sour cream to show how
our love has aged but must stay fresh.
I add some chicken to give
my love burrito some more protein,
so you’ll have the power
to love me back.
Tomatoes, avocados, lettuce and onion,
plus a little cilantro and salsa,
all of the earth as is our love, organic and
eternal, all-powerful,
filled with god,
all wrapped in an
extra-large tortilla,
zero grams trans-fats.
I fold the ends,
trying to contain all the
love and emotion of
all those love songs,
all those poems,
‘Somewhere I Have Never Travelled Gladly Beyond,’
and ‘Love, Love Me Do,’
without spilling any rice
or leaking any salsa passion.
I give you this burrito,
but then you say,
‘No thanks, I already ate.’

I love my dryer

My major appliance just can’t get hot.
It could be her igniter is shot.
If that isn’t it, it might be the fuse,
or the optical sensor’s seen too much abuse.
Is she set up for propane
and I’m giving her gas?
I’ll have to convert her,
what a pain in the ass.
Could be she’s electric
and just not plugged in,
or she tripped the breaker –
I’ll flip it and try agin’.
If she’d just get hot
I’d live a clean life,
My major appliance
Would become my wife.
Whirlpool, Amana, Maytag, GE,
Spinning and heating and tumbling me.

Waffle Break is Over

The finches are telling me
what to do,
prune the tree, move the feeder,
add some seed,
hurtle headlong through space,
find a friend, call your mom.
What happened to that
finch I loved,
golden feathers, smelled like flowers,
sang so sweet?
Oh, here is another,
golden feathers, smells like flowers,
sings so sweet.

Thank you all for your support through the leukemia ordeal. Life goes on, and then it ends. Be at peace.