MODERATOR'S NOTE: CJ put this diary in the queue for publication today, expecting to be here. Instead, he is fighting for his life and may not live through the weekend. This left me with a decision to make. Do I post it? Do I post something else? Perhaps nothing at all today?
I think you deserve to know what the last few weeks have been like for our friend. (As you might expect, he has continued to wring every bit of life out of his situation that he can.) I think you have a right to know what music he planned to share with you. Most of all, the Daily Kos community - especially the KosAbility community - should have access to the poem he wrote with you in mind.
CJ is in critical condition as I write this Sunday morning. I promise to share any news I receive as a diary update.
Nurse Kelley ♥
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
A month ago, your correspondent was faced with the daunting prospect of unsuccessful chemotherapy resulting in blood transfusions this month.
Instead, my oncologist informed me early in the month that the last round of chemo had been, at least, partially successful, and I could, in fact, relax for what initially promised to be AN ENTIRE MONTH with no IV needles hanging from my only arm as they pumped cancer killing drugs into my system. And even that promise might go by the wayside.
Oh joy!
The diary below chronicles the activities of a "prisoner" released on parole until the "CLL wardens" come by to take him back to the Infusion Center once again.
Day 1
Don't know what to do. No appointments at the center. No doc. appointment 'til Friday. Very weak, tired. Must get ready for tonight's soccer game.
Need to find out if we have back-up when key players go down later in season. Take Max, Yogi, Jake out in first half, see how team plays without 'em.
Wrote villanelle for John's new granddaughter.
Met Coolette about Jonah's art and getting some money to him in prison.
Got new Neil Young music. Great stuff
Made quiche. OK, not great.
Made roast Italian veges- potatoes, peppers, mushrooms, garlic, onions.
Day 2
No sleep all night. Not unusual
Made peach/cranberry crumble for breakfast all week
Made spicy vegan fried rice
Made broccoli tofu cashews in mild peanut sauce
Slept much of afternoon
Made iced tea
Ordered scrips
Did budget for next month
Karl re his job
Day 3
No sleep until 4am
Coffee shop
Advised J re Emerge
Picked up scrips
Completed two art pieces
Made cha-siu
Soccer training at 5pm
Bad recurring cramps in hand started tonight
Erling to pick up laundry and help make bed
Day 4
Doc says no chemo until late in September, and that's a relief, my arm is starting to resemble a thunderstorm at sunset with rays of reddish light poking through blue clouds.
Headaches have returned with a vengeance and are causing my inability to sleep (it's 2am right now!) Doc says the CLL is the direct cause, impacts a vein in the right forehead. I can see, hear and feel it! Treatment now with massive doses of antibiotics for next month.
Next step is exploratory brain surgery. We will have discussion about all my options before I commit to that!
Prognosis here not great, likely to result in sudden total blindness. Not a good prospect for a writer, poet and painter!
Today, my friend and assistant soccer coach Erling advises he will miss game tomorrow. Driving to TX to pick up his cousin, bring him back here, set up apartment together, start a new job. Happy for them.
Day 5
Soccer at 8. Karl is assisting today. Lost 6-1
Karl also doing laundry for me and taking me to TJ's later
Still no word from my teenage son, why do all teens think they are wise 50 year olds? I guess when you finally realize what others have known for years you think you're the only one who knows it!
Pain took over, no sleep, cramping in legs/feet/arm/hand
Headache in temple debilitating, antibiotics at 90mil a day still not helping.
Day 6
Met James Mason in coffee shop, will follow up
Great conversation with Sterling about Bob Marley, Sterling was there!
Then young man named Joshua gave me new page in my book
Groceries with Karl in his new Mazda, slick
Very tired, leg cramps excruciating, painful, hands and feet like stone
Slept much of day
Wrote diary re raising cash for Jonah in jail
Wrote and posted Indigo Kalliope diary in afternoon
Feet and hand turn to stone, limbs cramped
Called emergency at 10:30pm took me to VCMC
Day 7
Treated for after effects of antibiotics. Cramping and disorientation.
Came home at 7am, walked to coffee shop for latte
Coolette brought originals of Jonah's work
Wrote this for my KosAbility colleagues:
The New Horatios at the Bridge
(For A.E. Houseman)
An outnumbered band of ill-equipped veterans
Volunteer for duty on this fate deciding day
Where nurse and priest and blogger stand
Shoulder-locked in confident array
A quilter and her sister over there
Stand arrayed beside a kilted Scot
Mother/fighter for disabled rights. Care
They for those less able to go not
Where help is needed most. Look see
The bear arms locked with the math savant
Himself learning disabled. Many others to be
Mentioned in this army of care for human want
This bridge will hold, as with Horatio, until
Every soul is safe and help is an open offer
We can do no less, for if we don't fulfill
Our duty to our fellows, what more does life proffer?
© CJ Campbell September 2012
Day 8
Too weak to coach today, Erling was fine on his own first time, lost 4-3
Slept much of day
Writing much poetry
The Rethug Convention is nothing less than a reptilian feeding frenzy
topped off by an ancient half blind lizard haranguing a dead stump.
Still not retaining food and drink
Headache gets worse each day
Day 9
Checked with Doc today, bad news. Pred not working
Pred dose down to 40mg daily.
So biopsy on my head indicated.
Will see surgeon, find out possible outcomes and
decide on next steps next week.
Got great page in my diary from retired surveyor at coffee shop
Sketched old campeniso while we talked in Slater's waiting room
This wonderful old man goes back in the fields to perform stoop labor in order
to send his grandson to UCLA. The unseen backbone of America!
J. finally called. Teenagers!
Ian is the son every father dreams of and his bride to be is wonderful
Coolette has really messed up Jonah's art files, will try to fix tomorrow.
Day 10
Soccer training today, pain forced me to miss session
Erling and Mike will handle things with the team
Player's Mom called to ask if I was OK, offered to
bring food. People are wonderful!
Catch some needed Z's
Fix Jonah diary found new originals, then camera battery died!
Make tomato/onion casserole
Need coffee soon
Pain in arm, shoulder and right temple bloody excruciating.
The boys upstairs have not yet responded to my letter asking
them why they don't believe the lease terms don't apply to them.
Oh, well, they have until the end of the month and the landlord
will be on them like a ton'o bricks. Imagine their faces when Big Mike
and the other Irish knock on their door! These are large people!
Day 11
I do not believe I just slept from 11pm to 5:30am Heaven!
Camera battery recharged, will work on prison art today
Making Thai drumsticks in oven, mmmmm tasty.
Send music to coffee shop hookup
Blurted my story to Mark in Caffrodite, nice.
Got nice page in diary from two young women
Team Moms arrive with enough food to last me for two weeks. Lucky man!
Pain increasing in temple, fight through.
Been working with half a hand for over two weeks now
The chicken and the rice were fabuloso!
Cramps would not let me sleep again
Day 12
Teenage boys know so much. Ignore the coach, so lose once again
and wonder why. Hard lessons for young men.
Aussie food supplies arrived, cookies crackers mmmm.
Art supplies first shipment, give Ben Arrellanes pencils
Pain bad, catch some zzz's
Thai drumsticks and tomato/onion casserole for dinner
Listened again to John Williams playing "Concerto di Aranjuez". Brilliant
Painted Southern Cross acrylic piece "Cooee"
Day 13
Email to team
Coffee shop for much needed caffeine hit early
Hand still hard to manipulate and brain still in neutral
Uploaded new Jonah pieces
Drew version of Aboriginal legend of Southern Cross with 7yo Ben in my book
John and Ben took me on shopping trip
Must sleep Slept fitfully in blocks of 1 hour
Teenage son thinks he's Freud and of course gets it completely ass-backwards
Day 14
Up at 5am headache excruciating
Can't eat, losing weight fast, pajamas keep falling down LOL
Wrote new poem about the future and what it holds for me
Jonah's art will be up by the following weekend
Oncologist first thing. News is that biopsy in necessary to find out if they
can stop impending blindness. Will go tomorrow.
Told oncologist my son getting married in Jan. He replied
"That's why I became a doctor!"
He went on to say "You and I should write a book about the
past eight years, with my notes and your writings and poetry,
let's do it, you are a very different case and a very different patient"
Then he reached over and gave me a big hug! What a great doc I have!
Spent the day at Caffrodite. Needed much caffeine.
Carl picked up my laundry
Dinner from the Soccer Moms. Delish!
Pain eased but not for long, hope tomorrow's consult helps
Pain very bad in temple, (9/11) Pred dose increased again to 60mg daily
to be gradually tapered to zero over 3 months or so before
biopsy can be done.
Kelley, this one's for us! Maddy Prior has a voice of liquid gold.
So that's my last two weeks until 9/10/12. Goes to show how things change, how help comes from unexpected quarters and writing offers are sometimes directly in front of you.
Addendum: Sometimes pain can be best expressed in paint. Witness this at 2am in lieu of sleep:
A Tornado of Pain
Peace
CJ
UPDATE: It's just after 10 PM here in the Rockies. CJ's good friend who has been with him today posted the following here:
Col was so much better today. We spent the morning talking, listening to music and cracking stale old jokes. He is not out of the woods and many adverse things could still happen!
When I left this evening, Col's breathing was much more laboured than the morning. Perhaps the number of visitors today and all his enthusiastic conversation took it out of him.