Update on the Jump Off

i cannot tolerate the taste of coffee.
i keep forgetting to take the rest of my medications.
i drop things. incessantly. it's about to drive moi crazy.
i cannot keep up my end of conversations.
suddenly, two out of three felines are afflicted with the dread klingon dirty butt syndrome (dkdbs).
more cow bell!
oh, didn't i tell youse guys? i love christopher walken.
doesn't ANYONE (beyond her grandparents and uncle) remember caylee marie anthony?
i'm sorry but arpad don't-make-me-say-"corroborate" vass wasn't in the least bit "sympathetic" as a witness!
i lost my sympathy the first time i heard his simpering giggle.
and if they make the jury sniff "dead air"? uh-huh, it's all over. (the jury is gonna resent the heck out of that!)
how is it that i went roughly 7 hours almost withdrawal symptom free, then got hit with the godawful leg seizures in the eighth hour? whywhywhy?
buddy the kitten has been seeking reassurance of our love today --
he has been repeatedly shooed away when we are enjoying The Dobster
and apparently, he is shaken to his kitten core by that.
i am the very definition of "bloated."

that's about all that's fit to note.

oh, and my vision is permanently blurry.
also -- i mopped the entire manor this morning (and you know how big marlinspike hall is!) (i did it during the above-referenced 7 hours.)

and when i say "bloated," i mean BLOATED.

REPOST: El beso de la mujer arana

REPOST WARNING!
[maybe that should read "gush of sentiment" warning.]

hi, folks!  it's sunday morning... wait!  no, it is now sunday afternoon, and nadal is closing in on federer, hooray!  i can only hope that people understand clay-court genius... the french do, of course.  they totally get how it can make even an all-time great look awkward and late-swinging...

yes, looking stupid is the gift to any challenger of a truly great clay court specialist... and that's a more accurate description of what the french "totally get."  even if voltaire felt he had to reside in switzerland in order to survive his own shenanigans...

my tired and weird commentary?  it's not just a visual effect of methadone withdrawal that brought me to the point of reposting this blog entry of april 2009.  [if you're not a regular of this blog, i am in my 42nd hour of the GreatJumpOff...].

nope... i have a referring reference, a citing cite!  late yesterday afternoon, when i thought i'd experienced the worst of the worst of withdrawal (oh my god, it's five-all third set... rafa?  helllllooooo, rafffffaaaaaa?  it's love-40 on nadal's serve.  choke city, it's choke city.  okay, okay, now it's 15-40.  like that's any comfort.... because federer is now gonna serve a break up at 6-5... crap.  he's wily, that federer.  does anyone else think he has bulked up a bit?  no, i am NOT starting an unfounded steroid accusation.  ohmygod what a beautiful drop shot by rafa!)  ummmmm, right.  ummmmm, well, god damn it all, as we go into a FOURTH SET, as the elder mcinroe announces that nadal "has become predictable," i have developed a new withdrawal symptom:  fever???  who knew that withdrawal would provoke fever above 101?  (if you're not a regular of this blog, i am in my third year of experiencing daily fevers, though they are characterized as generally being BELOW 101...)

shoot, who knows?  maybe federer is behind this latest spike?

i wouldn't put it past him.  he's thinking:  "drat!  that inveterate (better than invertebrate!) blogger at elle est belle la seine la seine elle est belle is badmouthing me once again.  i must raise my level of play against this clay-court specialist!"

but... i will not be deterred from my story.  yesterday, yesterday afternoon, i watched Presumed Innocent.  no, not because of harrison ford, you numbnut, you!

BECAUSE OF RAUL JULIA.

Raúl Rafael Juliá y Arcelay (March 9, 1940 – October 24, 1994).  it still grieves me greatly to read "Raul Julia WAS an actor..." -- and not just because he was much more than a mere actor...

Humanitarian work


During his life, Juliá continued the work that was done by his parents during his childhood, cooperating with social and educational activities. Due to this, he was named to the New York Council for the Humanities. Among the targets of Juliá's charity work were initiatives directed towards youth. Concerned with rising levels of violence among teenagers, he sponsored script writing in high school students and supported young actions. In order to promote other Latin American performers, Juliá was an active member of the Hispanic Organization of Latin Actors (HOLA) and co-founded Visiones Luminosas, an initiative to promote screenwriters. He continued to work in the NYSF, but performed without receiving a salary. In a similar fashion, Juliá cooperated with independent filmmakers in Puerto Rico by acting in their productions for free or receiving a low salary. This constant involvement with the Latin American community earned him a posthumous Hispanic Heritage Award. Juliá also promoted interracial integration, being a member of Racial Harmony and serving as the chairman of the Joseph Papp Celebrity Coalition for Racial Harmony.


As part of his work in The Hunger Project, Juliá donated food to a food bank once every month. He also promoted the program on television and radio and served as narrator in bilingual videos. Juliá opened slots in his schedule to participate in multiple benefit galas on behalf of the organization. Due to this work, the project gave him their Global Citizen Award. His involvement was also recognized in "Ending Hunger: An Idea Whose time Has Come". On March 24, 1992, Juliá received the Courage of Conscience Award. In 1994, the government of El Salvador recognized his activism for human rights, granting him the role of overseer in their general elections in representation of Freedom House. During his visit to the country, he visited the tomb of Romero, subsequently describing his experience in a piece published in Freedom Review.


In recognition, the National Endowment for the Hispanic Arts offers the Raúl Juliá Award for Excellence annually. In 2002, actress Sandra Bullock was presented with the award. She received it for her work as the executive producer of The George Lopez Show, which offered work and exposition for Hispanic talent. In 2003, Daniel Rodríguez won the first Raúl Juliá Global Citizen Award from the Puerto Rico Family Institute based in New York, receiving the recognition due to charity work.


Honors: 

The Raul Julia Micro Society, a charter school located inside Public School 3 was named in honor of Julia. The school is located in the Tremont neighborhood in the New York City borough of the Bronx.

The actor's training unit of the Puerto Rican Traveling Theatre was renamed the Raul Julia Training Unit.

The National Hispanic Foundation for the Arts (NHFA) honors outstanding entertainment personalities annually with their Raúl Juliá Award for Excellence. The award which recognizes individuals who have contributed to the growth and awareness of Latinos in the arts and media is awarded annually to many Hispanic and non-Hispanic personalities. Past winners include Cristina Saralegui (2010) and Sandra Bullock (2002).
In 2000, the Hispanic Organization of Latin Actors (HOLA) renamed its Founders Award to the Raúl Juliá HOLA Founders Award.

that's right! proving once again that i am stronger than my addictions, yesterday afternoon, while watching
yesterday afternoon, i fell head over heels in love again... with raúl.  and i remembered, despite the incessant jerking of my legs, despite the nausea and other gastrointestinal difficulties, the yawns, the sweats -- i remembered that i had, once before, written a blog post about raúl juliá.

and without further ado (ha ha!) -- here it is (and CONGRATULATIONS, RAFA!!!!!!)[OKAY, so it is not all about raúl... so it is mostly about me and fred... what? did you think i was actually going to rise above incessant it's-all-about-me-itis?

********************************************************************************

It is happening too soon, this descent into pre-surgery panic. You would think that with each experience, each *survival*, I would build confidence instead of abject terror.

You'd be wrong.

I know that characterizing the result as "survival" is taking a grim view of things. It's just that none of these operations have provided the doctors (hence, me) with answers to the normal burning questions of life: Why can't we identify the organism that has produced all of this infection and explosive pus within my skeleton? Why does the Infectious Disease specialist say that there are "no antibiotics left to try"? Why is there air? Who keeps beating me to within an inch of my life every time I manage to doze off? Where did Fred put the cheesecake? How do we stop the spread of CRPS/RSD with each freaking surgery? Really, I am not kidding: Where did Fred stash the damn cheesecake? Never mind that the infection has apparently caused me to have blood sugars in the 300+ range... It's a zero-carb cheesecake. I swear.

Okay, I will opt for radiant (and subsidizable) health, and choose a better poison: sugar free, artificially-flavored, highly concentrated, orange Jello. I just happened to whip some up in a Julia-Childlike moment around dawn. To splurge? Top with about a quarter cup of lowfat plain yogurt, and serve with large slice of cheesecake.

I am sitting here, all alone within Marlinspike Hall, with a creepy Mudd mask on my face and, therefore, little bits of Mudd everywhere. My shirt collar looks like a bad attempt at papier-mâché. This stuff should have been washed away about an hour ago, but I've been "stuck" -- about as dry and flaky as the crapola on my visage. Remember the subtly dropped reference to "abject terror"? Yeah, that.

Prior to one of the last surgeries, I wrote this:

How in heck am I going to be able to care for myself, much less keep The Manor neat as a pin? The Old Masters dusted and straight (not to mention the occasional Rubens or Velasquez restoration project on long weekends)? All the antique Blue Jasper Wedgwood plaques free of nasty cat fuzz? The lawns -- replete with a scale replica of Wimbledon courts 1-19 plus Centre Court, sans that awful poof of a retractable roof that's going up for next year -- deeply green and trim? Oh, and how in the world can I keep the black algae out of the moat without a daily brushing and correction of chlorine requirements? I mean, I doubt that I'll be able to sport SCUBA gear anytime soon.

The answer to everything, unfortunately, appears to be that poor Fred will do all that needs doing. I am consumed by guilt, all the while wishing I could consume his cheesecake.

I have been able to achieve total self-care since the last surgery. He hasn't had to help me with anything -- oh, that is not true! I forgot about the laundry. I can load the dirties into the washer and get that going, but my arms, hands, and shoulders aren't strong enough to lift the wet clothes and transfer them to the dryer. So he does that for me. Sometimes I cannot manage the finer movements needed for folding, too, so I have had to try to assume a nonchalant air while he folds and puts up laundry.

I can bathe myself and manage all the fascinating chores of hygiene. My chores are probably more complicated than your clean-up routine -- There is, for instance, some difficulty when your arms won't go exactly where you need them to be... when you involve that nasty red Hibiclens... when you cannot reach the hair on your head! I've found ways to get it all done and usually come out presentable -- but never remotely like the way I *can* look.

He says that I should ask him for more help. No. I don't want him washing me, dressing me, helping with hair, make-up. That would be my suicidal low.

He does all the shopping and errands: groceries, banking, and all the other stuff. He drives me to all appointments, and in what can only be described as insane traffic. Tête-de-Hergé-ens are notoriously bad drivers. About half grew up driving on the left side of the road, the other half on the right. It keeps things interesting.

Today, Fred has snared La Bonne et Belle Bianca Castafiore and they've tramped off through the African savanna area of The Manor's grounds to deal with the Wimbledon-esque courts. He didn't exactly explain it to her, but he needs her natural, umm... girth -- to help drive the rollers that tamp down the grass courts.

I hope that the method behind his madness is to indoctrinate her to life as a responsible Manor-Mate. She needs to pitch in more often. She could stay busy just
with our new effort to replace all that crumbling medieval chinking between the stones and wood beams with space age latex-based polymer chinking -- the kind that people use on log homes. We embarked on this without exactly having the Captain's permission. I think the hope is that he won't really notice (though the fact that we won't be consuming so much dried peat and wood might tip him off). Living "green" is really nice, but living warm is even better. And the stuff comes in a variety of colors.

Okay... now my face has contracted into a weird leer. Gotta JUMP in the shower and scrape it off. Wash the head of curly and somewhat oily hair. Sit humbly on my shower chair, figuring how to get clothes on without breaking a bone.

I haven't showered in about a week. That does not mean that I am not clean -- I am -- I just haven't been able to stand long enough to get in the tub. More honestly, I have been scared, as I've managed to pass out a few times in recent weeks.

Yadda.


I'll leave you with this: Occasionally, and oddly enough, mostly at times when The Fredster and La Bonne et Belle Bianca are absent, I daydream and miss, viscerally, Raúl Juliá.

Doesn't everyone?

Righten the odds

I thought nothing could get to me.  

Oh, it's okay, Dear Reader, my "jumping off" remains a trustworthy fact. But something did almost scare me to the point where I considered failure a decent enough option.

Shame stopped me, and stilled me, and brought me back to reason -- if, indeed, reason embraces notions such as God, and God's grace.

If, indeed, reason covers Kate.

I'm putting my newfound sobriety (oh, shut up) on the line and saying, "yes, reason covers not just a multitude of your miserable ass sins, reason also covers the unsullied, the babies, the loving mothers, the faithful fathers... yes, reason covers radiation and chemo therapies, covers the good doctors, nurses, aides, and techs... yes, reason covers daughter sisters and son brothers... and most definitely, reason covers kate.

I checked my email for the first time today (instead of the addicted hourly regimen followed by my Former Junkie Self) -- at 19:00. At roughly 19:00:23, I thought of my own failure, and how much of a likelihood it would become were the message I was about to read a very difficult one.  All I knew at that point was that it had been just over a week since Holly McRae had posted an update to her journal about Kate's journey on CaringBridge.  It was my catastrophic bent at that second to think the very worst.

I beg Holly's pardon as the necessary shift to it's-not-all-about-me takes hold. 

This is the entirety of what she posted (forgive me for that, as well) and if you've never met Kate through her mother's words before, consider a trip over to the CaringBridge to read all of her journaling.  It will move and inspire you.  It can almost make a believer out of anyone, just to righten the odds.

I continue to find it harder and harder to update. Not for lack of things happening, and most definitely not for lack of emotion, simply for the lack of words. No words seem adequate for what our hearts feel, on the good days and on the awful days. It is a constant daily battle to reign in our thoughts and fears concerning Kate. Being that I am the one who engages more of the medical side of Kate's diagnosis and reads more of the literature concerning it, I tend to struggle with it more heavily.


Kate is doing well. Of course everything is relative, and that being quite relative to her diagnosis. We are grateful the last chemo did not cause more symptoms or side effects in Kate than it did. She is easily fatigued, which is probably more related to the radiation, and continues with stomach pains here and there. Her appetite is unpredictable, so again we are having to be less strict with what she eats, simply to get her to eat some days. I have noticed that she also seems slightly less engaged with others outside of our home. I am not sure as to the reason, and have stopped guessing. I simply cherish the moments we see her full throttle at home.




Kate was horribly disappointed to learn that she would be getting chemo again this week. I guess she had forgotten. We had not! It has been a delicate dance learning to be grateful we have something to fight with, while at the same time despising those very treatments. She will have her bloodwork drawn on Tuesday to see what effect the chemo had on her blood counts and then proceed with the infusion of her biweekly chemo. I am sure we will also discuss a starting date for the Avastin, and begin scheduling her next MRI. We are obviously no longer on the every 3 month plan for scans. I was actually hoping for monthly MRI's and have realized that 2 months for now is probably best. It is a very delicate balance not scanning too early, and yet not allowing too much time to pass if cancer is growing unnoticed. If we scan before we allow time for the chemo to have an effect, there is the possibility we could see growth and take her off of one of the few medications that may work. The reason for not desiring to scan too infrequently is obvious. So our thought is her next MRI will most likely be early to mid July.




This month marks the 2 year anniversary of Kate's diagnosis. God has been working ferociously on my heart the past few months concerning just that. The disappointment and at times anger for that which she is faced. How we had hoped and prayed that at 2 years we would find our sweet girl cancer free, that we would be celebrating God's faithfulness and His mercy in allowing Kate freedom from the clutches of this disease. Rather we find ourselves battling 2 new tumors and facing the uncertainty of an aggressive and unforgiving disease that almost always ends in death. We find ourselves facing the ramifications of having had to aggressively radiate her entire brain and spine in hopes of sparing her life. We find ourselves craving the days past where getting the tangles out of her curly blonde hair was the most frustrating part of the morning. Now we wonder if her hair will ever come back.


And yet, despite our raging disappointments, God continues to be faithful. And He most definitely continues to be able to heal her. As much as my heart yearns to see her walk again without a brace and to see her right hand paint so beautifully as it once did, I am reminded she also faced a day she could not move her right side at all. A day when thoughts plagued us if we would ever see her move outside her wheelchair. If we would ever hear her sweet voice utter our names again, or tell us she loved us. So we celebrate the blessings mixed in with the current pains. We continue to fight for her life, and for her quality of life. And in the same breathe realize this life is not our ultimate home. Never have I been more grateful for that.




Tomorrow we celebrate a very sweet day in our daughters lives. Aaron will be baptizing both Kate and Olivia. So tomorrow we celebrate those things God has done in our daughters lives. And the rest of the week we continue the treatments hoping and praying Kate will have a lifetime to share those things with others. Thanks for being persistent in prayer for Kate's healing.

The Jump Off

Well, this methadone addict "jumped off" last night at precisely 6:30 PM. I'm not at the 24 hour mark yet, 2 more of those hours remain. You wanna hear something crazy? I've now started the "jump off" for Percocet -- retroactive to 5 AM today. I'm about at the 12 hour mark for that bit of lunacy.

The 30 hour mark for methadone is notorious for its difficulty, so tonight at just half past midnight is when the toughest times are anticipated to *begin*. Is that scaring me? Yes. Do I think I will emerge victorious in my battle against the Demon Opiates? Yes, indeed. Else I would not have "jumped off" to begin with. According to the written schedule I drew up over a week ago, I was so scared as to give each new level of methadone dosage FIVE days... Yet I decided last night to give the 10 mg level short shrift and only ONE day of experience.

My hands are twitching so much that I may actually have to run spellcheck.

We won't discuss my legs except to say that were my feet able to stand the feel of shoes, balletic toe shoes (size 15) might just slip right on. My toes seem to fusing...

And my knees are somehow imploding, bending backward.

And, yep, I am testing those knees every time the half-bath -- just 15 feet away -- calls.

And, yep, Fred is up to speed and greatly encouraging. I believe that my earlier read on The Fredster was Demon-Driven. Was I setting him and myself up as the excuse of my failure? I damned well think I was. But no more. Let's just say that I remembered, just in time, that Fred was raised on cowboy movies and cowboy philosophy, and that he cannot be envisioned in anything but a white hat.

Possibly the weirdest symptom of this withdrawal is how COLD I feel.

COLD in terms of temperature, You Numbnuts! I woke covered by heavy blankets, something that I just don't do. Always, I feel HOT, stifled by CRPS and its attendant pains. I even dialed down the temp for the air conditioner, again something that I just don't do.

The worst symptom is exactly the reason for which I began taking methadone to begin with, and that is PAIN. I feel every ache, every lancinating bit of neuropathic sadomasochism. It's the only thing reminding me of the despairing truth -- that I will have to find a new way to control pain if the new ketamine regime fails. The only thing I know for sure is that it will not be what the doctor there wants me on -- Prialt. I cannot see having that stuff injected into my spine, and you betcha, I am scared to death of the side effects.

[Chief among them being an apparent predilection for suicide.]

Anyway... though I've much that wants to be written -- most of it about the French Open, some of it about the recent USAmerican drone strike that killed Ilyas Kashmiri -- my focus right now is laser lit on my various time pieces.

Because this methadone addict "jumped off" last night at precisely 6:30 PM.

"... rest in the grace of the world..."

The Peace of Wild Things

When despair for the world grows in me

and I wake in the night at the least sound

in fear of what my life and my children's lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought

of grief. I come into the presence of still water.

And I feel above me the day-blind stars

waiting with their light. For a time

I rest in the grace of the world, and am free.

— Wendell Berry

wednesday morning catcam

You can never have too much cat.

Right?

Buddy the Kitten is huge now, and increasingly brave.  Not quite brave enough to confront Marmy Fluffy-Butt, yet, but getting there.  In fact, about the only piece of cat documentary that we lack is a feature length film following their evolving relationship.  Buddy recognizes Marmy's superior position within Marlinspike Hall, but still covets the fluffiness and innate playfulness of her magnificent, waving tail.

He always seems so shocked when reminded that this friendly piece o' hairiness is connected to Marmy the BeAtch -- as you'll see in this little video, when he finds himself perilously close to Her Highness after jumping on the couch.  (Oh my God, she's attached to her tail... Oops!)