My neutrophils are cantering gently

I will upload Alice's wonderful image a 2nd time because it is just SO full of courage and intention. My white counts and neutrophils are as well, just not exactly on a timetable I'm really excited about. The WBC (white blood counts) are at 600 en route to 1000; the ANC (absolute neutrophil counts, a crucial aspect of these immune fighters) are at 400 out of 1000. Dem's today's numbers. I know some of you were rooting for my emancipation TODAY. Clearly it will need to be on inner more than 3D levels....

Now we CAN shoot for anywhere between 3000-10,000..... I'm hoping for the minimum for freedom. I guess this will give me more time for my continuing 12 Days of Christmas as well as the very daunting work dealing with two different insurance companies. You'd think taking on leukemia would be enough, but noooooooo! I will accept any and all suggestions for dealing with these forked tongue creatures (insurance companies). Now and then a gem appears, with a heart of helpfulness and clear communication. Unfortunately they are in the minority. I will embrace them and take steps forward as best as I can.

To 1000 and 5000 and beyond! Have a very safe and Happy New Year!

The Charge of the Neutrophils!

Hi-Ho Healing Warriors!!.... will the New Year's Eve day blood draw show the full fiery fervor of wonderful Alice's illustration of the Charge of the Neutrophils!? They have been inching up. The variations in how much, when, conditions, caveats, dire warnings, huge hopes, fuzzy wuzzy maybes and the like have all filled my head (it's a jungle in there, I tell ya) but not a current page of this blog. "Hey! They were half-way there yesterday!" Nope. I'm in all-or-nothing mode and wanted to post the pause of waiting to tell you all WHEN they arrive with the entire snorting cavalcade in tow.

It could be today. It might not be. I'll know within the hour. And I HAD to get Alice's brilliant artwork up for all of you to see! Buzz, you've been a good bud, but this is custom jumpin' juju of the best kind - from the heart and talent of a dear friend. 

Join with me to visualize 1000! To infinity - and beyond!

It is time to ask every one of you to please VISUALIZE 1000 - one thousand! Please see both my white blood counts (WBC) and those slightly recalcitrant NEUTROPHILS (ANC - Absolute Neutrophil Count) achieving and easily bypassing the 1000 mark. I am praying and hoping to be sprung from this joint by the end of this week, or just past January 1st. Until they both hit 1000, I cannot leave. Well, technically I am a free agent and I may do as I darn well please, but it would be really dumb to take off with no immune system to speak of right now....

A very good friend had her Spiritual Director paper her walls with little Post-It Notes with "1000" written on each one. Personally, being adverse to too much clutter, I'd have not gone in that direction, but this was part of their prayer for me the last time in the scary world of Induction Chemotherapy. Now that I'm in Consolidation, the five days of higher-dose ("dis" is right, I love my typos) chemo probably made my poor bone marrow say, "Whoa, honey, what gives with all this!? I've only been trying to do my best all along. So we had a few gnarly cancer cells sneak into the party.... didn't mean to cause you no harm, honest...." Every day I get my Neupogen shot, and right about now - ESPECIALLY with your focused visualizations, the numbers are supposed to start waking from their woozy snooze and get with the program! Move it, boys and girls! Kick it up and get me OUT! 

Not that I'm impatient or anything. 

I trust that any threats I may or may not receive for copyright infringement by using the likeness of Buzz Light Year will be offset by any attorney's (or attorneys') sympathy with my leukemic plight. Otherwise I will incur a major Al-Anon slip and use every morsel of guilt and emotional blackmail I can muster. Again, you can see why my spiritual path, from my Christian walk to 12-Step recovery, is a daily occurrence for me. 

It's a little tricky to move an extra graphic around, but I also want to add St. George slaying the Dragon. Some may prefer the happy clappy let's visualize a gentle healing, lovingly asking the cancer cells to leave kind of visual. More often than not I am pissed off as hell that I have AML so am also bringing in what I'd like to do with these invading wretches. Here I am in all of my varied complexity. I will not call it imperfection right now because I do not apologize for being angry about this scene. 

Whether slaying or cooing, please continue your prayers and hopes for not only my immediate (screaming needy desperate) desires to leave the hospital, but for a longer term solution that resonates with all of my being. 

and now a treasure hunt

I think the etheric grinch vibrations of Christmas are easing. My nurse this morning said, "You have gifts you haven't opened yet?" And I responded with cheeriness and not defensiveness, "No, of course not! I wouldn't open them all at once like a 3-year-old! I'm having the 12 Days of Christmas and savoring each and every morsel from my blessed friends. There are even cards I get to open!" I can allow myself to be present with the love and not just roar through bits of paper while bemoaning my current incapacity for timely reciprocity.

I believe that I can offer a thanks that a shift has occurred from shuddering unworthiness to palpable delight. I have so many calls to make and Thank You Cards to write in the coming weeks! An ice chunk of fear has left. I feel welcomed to the beginning of a more relaxed sense of peace. There are some cooing doves not far away..... perhaps just for today, and that is fine by me. Tomorrow or later on I'll worry about all the Horrible Things. Today the sun is out, my coffee is strong and I can breathe in some peace. It is a moment I will cherish. 

piece by peace

It's Christmas - the day, the eve. I grapple with a squirmy annoyance, primarily the rude wrestling matches between aeons of "shoulds," hiccupy sadness, dejected dissociation, and then some errant clumps of joy. The latter do not arise when I tap a wand; Come, o joy, I beseech thee, come amidst the dross - 'tis Christmas already, come! My little joy blips come to me with visiting friends.... some expected, some not. They come with the and who dressed YOU today? hospital volunteers bringing was dis? fistfuls of cards that I am opening one at a time in a chosen 12 Days of Christmas manner of acceptance.... they come when you phone, or heck, when I phone you. They come when we connect, breezily or intimately. They come when a box arrives and my gut tightens in shock, surprise, delight and this wretched wave of unworthiness I am loathe to confess. I am surrounded by love, tiptoeing in, skipping in, whispering in. And I am hounded at times by a frozen 4th chakra (the heart) that crossfires with my brain and doesn't quite believe it.

I want to walk out the front door of this place and not return. I am "fine" - freakin' fargging fine 'n dandy, except for the slight complication that I have no immune system to speak of right now. How can that be? I'm up and about, doing and being as much as I can muster from the you can't pass through the double doors, girlie confines of this particular oncology ward. No white blood cells to speak of. No neutrophils to speak of. Zip. None. Zero. I am told repeatedly that this is how long it takes after getting blasted with such a high dose of chemo as I did this time around. And I thought I'd be brushing off my cookie crumb-cluttered palms and out of here lickity split, thank you very much! I'm in Remission! I feel FINE! Get my ass home! Yet here comes another low platelet day, another platelet transfusion. Rah rah sis boom bah. So this is the way to treat leukemia while I look to the horizon for a bone marrow transplant and choke while I attempt to contemplate the horrors of dealing with insurance issues? 

Evidently it is. 

I had a wonderful side jaunt looking for websites speaking of the origin of the Twelve Days of Christmas being a hidden catechism during a time when being Roman Catholic in England was basically banned. I mean, really; it's a silly ditty.... except when I ponder that for example the "4 Calling Birds" represented the Four Gospels and/or the Four Evangelists. It's a lovely link. And you can Google it yourself.... until you get to Snopes.com, the great equalizer of all things suspicious. Snopes thumbs its nose. I don't. Nine Ladies Dancing? The nine fruits of the Holy Spirit. In this Hospital Room, when Christmas both bowls me over and finds me crying with loneliness for the companionship with my friends OUTSIDE, please, not here in mini-blip yet precious visits.... in this Hospital Room, I like the Underground Catechism. And I listen to the carols over and over on Minnesota Public Radio as well in as my fat 'n sassy iTunes collection.

The worst of it was missing singing with my Church choir - missing most of Advent, in fact. That is my soul food. Perhaps I should just give it all up and find a proper Religious Community and be submersed in that which so fills me. Today I am hospitalized with leukemia, and what did St. Paul's do for me here? They grabbed this person and that, including one of my dearest friends from Seattle, they put their heads together, about 200 feet of ethernet cable, a wireless router, a webcam.... and live broadcast the Christmas Eve service to me here in my room, here on my laptop. L'il ole freakin' me! I was texting back and forth with Jay Luther, the webcam master (I think he'd like that term); "A little to the right, please,"...... "Like this?" he'd say... and so forth. We were technical, we aimed for precision, we were silly, we were downright tacky. And I watched in tears, managing to put some paper tape over my Macbook Pro iSight camera so they couldn't see me cry while I watched the service I so desperately wished I could be in. It was dreamy and surreal. My joy is in my participation, when I am there and in the midst of it. I felt like a little kid peeping through a hole in the fence, except this was by invitation only and they did this for me. And it was dreamy and surreal.....

So to all of you blessed angels at St. Paul's Episcopal Church in San Rafael - thank you. If I could've crawled through the ethernet cable and stumbled into my red choir robe, I would've so been there..... and in my own limited yet heart-overflowing way, I was. Thank you. 

On the First Day of Christmas, my true love gave to me, a partridge in a pear tree: "The 'true love' mentioned in the song doesn't refer to an earthly suitor, it refers to God Himself....The partridge in a pear tree is Jesus Christ, the Son of God." 

As it resonates in your heart, so it shall be. 

I have not much to say

So I'll keep it quiet. Your prayers and good thoughts are as always received with gratitude, even if I am not able to communicate that gratitude with any particular grace.

twists 'n turns and then some

This unwellness is a moody business. From a happy little oxycodone pill to ease an aching tooth to a tumble stumble one after another kind of day, I am pulling out of what I might call a 36-hour hell. In a matter of a half hour by late yesterday morning, I went from assuring the medical staff that I did not need a gurney to be wheeled into the x-ray room to nearly fainting out of a wheelchair. I'm a rather independent sort and I neither enjoy nor have a habit of being in these states. It's damn humbling. This pill there, a heave into the PICC-line (my 3-way insta-catheter deal) of anti-nausea medication.... it was a woo-woo day. Blood pressure decided to spook a number of folks by eventually averaging around 85/56. More fluids and products in veins, more laying in bed, nurses and Dr. K. in and out of the room most of the day and well well into the wee hours of the night. I find it an odd manner to keep away the leukemic cancer cells while I ponder and hope for an eventual bone marrow transplant in the coming x-number of months. And I thought that cruisin' back in for Consolidation while feeling so relatively hale and hearty would be a piece of cake! Not so. Not cake.

At least the angst has been eased by the opulent box of homemade French Madelaine's my dear high school chum Susan sent all the way from Humboldt County in Northern California. (We here at Alta Bates did make a few lame jokes about what may or may not also have been added to the cookies). This is part of my love healing, from prayers and chants, to my neighbors and friends coming by with holy vibrations, food and clean laundry, to phone calls, to the wonderful cards and gifts!!! arriving daily. I wave weakly in gratitude while I am embraced in pleasurable succor. Chris and Alice mailed me a darling petite silver Christmas tree that is perched atop my mini-fridge. George's friend Lisa regaled me with posh chocolates. Nursing staff bring me pink lemonade. Alan and Michele are asking me what I'd like brought over for Christmas Day dinner. 

At times I am gutted by self-pity. It's CHRISTMAS, it's Advent. I don't want to be in a hospital room wondering about six-figure escalating medical bills bantied about by insurance politics that play now we've gotcha, now we don't!.... vacillating between feeling grateful to be alive and then wondering how much time I have and why in heaven's name I don't get to put a finger on it. Wishing to write and share with you, then wishing to simply slither under the covers in dull anonymity. I used to feel so alone at times and yet I look around my room and feel cherished. I see a Kleenix box with Wall-E on it, sent from Susan & Klaus in Atlanta. It's our private little thing, like our bat medicine theme. Seemingly innocuous morsels can remind me that each breath has merit, pained or exulted.  

in bed with low counts

The 5 days of chemo have done their job and I'm in bed with virtually no counts. Lots of rest, blood tests, the like. I'm doing little writing or calling. I receive all of your prayers and love. xoxoxo Diane

sometimes a colorful journey

I love imagining what visual will emerge as a theme du jour or even as a momentary mood.... and here is this astounding artwork by my friend Alison Sheriffs Brown in Scotland. To quote her husband Tony, "This is a piece of Ali's textile art. She was inspired by the book, "The Time Travellers Wife." The photo does not do justice. It is beautiful and sold on the first day of showing it." I am drawn in by its beauty and churning uncertainties as well as by the love of my friends I hope to visit sometime this next year when the cancer cells have been beaten back by some medical miracle method or another.

I don't write in here every day. Most of you know that. I would bore myself to tears. Facebook gets the heads up one-liners if you're into that. Otherwise.... I must say that the Consolidation portion of our show is a lighter version than the full blown Induction of last October. Still, the daily chemo takes its toll. The drugs take their toll. But the blessings come in and give a squiggley do-si-do to my heart, from Eleanor & Bobbe bringing pastry, latté and a Russian Orthodox icon with beautiful wooden bracelet, to the cards now gracing my walls again, to my neighbor Michael coming by with mail and oh those never ending medical bills, from Stacey's girlfriend jaunts..... I will leave some of you out here, pleading slovenly chemo brain.... but you are not far from my heart. I am so not alone. A Christian Harmony music camp I did this summer "on a whim" now has a YouTube link where they dedicated Wondrous Love to me. I wept. I sent it on. 

My priest Fr. Christopher brought the Blessed Sacrament to me. I felt immensely resistant to receive while in the previous hospitalization. Now I hunger: "This is my Body; take, eat, and do this in remembrance of me." The Holy Spirit is my healing medicine regardless of this body's twists and turns. This doesn't mean I am always a poster child for unwavering chipper praise. But without my walk with the Risen Lord..... what a helluva slog this would be. And sometimes it is.

There are times when I feel my father and my little brother visiting me. Little David died in 1967; my father in 1988. "Where ARE YOU!" I sometime wail inside. We're here, I can sense softly. 

And so the little textile boat tumbles and tosses on the seas. Today the chemo ends and we see where my weakened counts will journey. Will I be sprung by New Year's? One day at a time, we'll wait and see. I'll write when I can. Come and visit - the views of the Berkeley Hills are lovely.

Back in the Saddle Again

I was thinking in terms of the hospital game saddle while the video links imply freedom, fun, camaraderie, wide open spaces, shootin' up the bad guys, roaming with your people..... we've got a 1950's juxtaposition going on and I'm letting it ride. I am back in the hospital saddle but it isn't the Addams Family haunted house or even a scene from those scary horror movies I can't watch.

I'm also back into the literary mud puddle of giving myself permission to drool all over my stumbling attempts at articulation. I whined and wept my way through the insertion of yesterday's PICC line; curled up in bed and begrudgingly back with my non-honey pie of an IV pole, and as of this morning, the games have begun! I have agreed with gentle Dr. K's suggestion that I add Clonazepam to my smorgasbord of goodies, since I have the teeniest tiniest tendency to FREAK OUT at things normal folk might scoff at. Yeah, I'm a Type-A, hypersensitive, recovering everything, pea princess piece o' work at times. I realize that this comes as a surprise to many of you. And chemo land began this morning. For you curious sorts, I'm on the 'FLAG' program: Fludarabine plus high-dose Ara-C (Cytarabine) plus the white cell stimulating Neupogen. I have a mental image of the Neupogen flushing out those errant blasts I know are quivering behind my little toe or nose hairs..... and once they're shoo'd out, the big gun duck hunters will load up and shoot 'em all down. Sadly the collateral damage will keep me here in Room 4200 through the New Year, but imagine all the resentments I'll avoid about neighborhood parties invading MY peace and quiet. Some squeeze lemons to make lemonade (for example, the beloved and late Randy Pausch); I get out my butterfly net and leap for silver linings. Whatever analogies make my healing have its singing days as honestly as possible.

Oh I love writing when I'm space-brained! Annie Lamott taught us about "shitty first drafts"in her book Bird by Bird, and I'm slappin' my sides in this space-o-rama mud puddle. 

I promised an address and here it is:

Diane G. Luboff

Alta Bates Medical Center

4NE Oncology, Room 4200

2450 Ashby Ave.

Berkeley, CA 94705

Every time you say a prayer to the God of your understanding, it lands in my being with more power than all the fancy-dancy expensive drugs for me here. Please remember my gratitude to you, even when in my abject selfishness I will forget to express it. 

BLESS YOU ALL!

$277,728.37

This is the amount of money that the hospital alone - Alta Bates Summit in Oakland, California  - is billing my insurance company for 25 days of treating me for acute leukemia. That is over $11,000 per day. That does not include the separate bills coming in from the assorted labs. 

The good news is that my Blue Shield of California policy will take the hit and do most of the grappling. My out-of-pocket costs should not be more than a mere several thousand dollars, when all is said and done. This is not how the system works, of course, with various labs already sending me "gimme now!" bills for the portions my insurance company has disallowed. That an acute leukemia patient would be on the receiving end of such soulful sensitivity galls me and most of my friends. Of course right work deserves right pay. And the vultures are circling already. Isn't our system truly - please pardon me, I really need to use this word here - fucked up?

I spent a week having stared at the pile of bills, frozen in anxiety. That the first one I slashed open was this $277,728.37 from Alta Bates slithered me to bug-eyed jello status. The amount is beyond surreal, on many levels. It is almost funny. Even while in the hospital, I'd mused that that portion of our show would run a hundred thousand.... perhaps even two. That the bill is pushing $300K, well over a quarter of a million USDollars.... wow. Am I in the wrong business or what? We won't even talk about the tanking global markets and my work on hold now!

So this is an intriguing distraction before I return for another round tomorrow. Stacey's museum shot will grace this page while I try and do as much admin as I can with strong blood counts and hearty adrenal glands egging me along. How much reading can I do on bone marrow transplants and long-term prognoses while I'm duking it out with an ending CalCOBRA policy and trying to find a Guaranteed Issue to invite me on board (for serious premium costs) beginning Feb. 1st? I have a mental image of a klutzy juggler being tossed more and more balls while on a creaking merry-go-round that's accelerating. Let's have some cranky bats darting amidst the painted carousel horses. Add 1920's music on crackling speakers. And one of these moments it'll all become so completely ridiculous that I'll start laughing..... 

I will let all of you know my exact hospital address after I've been given a room tomorrow. I have a new hospital and new oncologist.... a new team. Stay tuned......

A journey to a gentler Yes

I'm leaning on the photographic vision of my friends Ali & Tony once again.... an "angel" in the clouds from their recent holiday in sunny Madeira..... a much brighter climate than the current wintery cold in the still glorious Scottish Highlands. 

After my 48-hour journey through embracing the desolation of my leukemic options, after giving myself permission to consider the emotional truth of "I have had enough," I met again with Dr. K. and found myself shifting with quiet grace into a space of, "I can move into the next steps of Western medicine in a spirit of acceptance and peace." 

My initial diagnosis and nearly immediate hospitalization of October 27th was a panicked blur, my blood counts plummeting while the blasts were rising towards the 50% mark. Today's blessed yet ticking clock remission has given me permission to think as well as to let my emotional body have a voice and not a small amount of wailing sobs. I read the blog postings in the Leukemia & Lymphoma Society pages; I re-read various cancer sites' descriptions of Consolidation treatment and bone marrow transplants. I pondered 'the numbers' I could barely acknowledge over a month ago. They're not particularly inspiring. I didn't try to psych myself into Being Good. I allowed myself this willingness to die with more dignity than I'd imagined in a hospital setting. I phoned some close friends and cried. And this afternoon I found a shift that feels as authentic to my being as my heels dug in the sand resistance.... a shift that says today, "Well. This could be interesting. Let's give it a shot."

I was also told by Dr. K. that neither Consolidation nor the process of a bone marrow transplant would be as difficult (read = gut-wrenching and challenging) as the Induction I recently experienced in my 25 days in the hospital. While chemo is part of this upcoming treatment, I may well get a lesser dose rather than a stronger one as can be the case. Less chemo with the same shot at Good results!? They can even bring an exercise bike into my room, I am told. Talk about coaxing a shy kitty cat out from under the house with a plump piece of chicken or fish! 

Still, there are no guarantees. I'm going back into the hospital next Wednesday, Dec. 10th while I am still in remission. I will be there for roughly another 3 weeks.... through Christmas, probably until the New Year. Waiting until I relapse (e.g. the return of the blasts) is not preferred. I'll be under a new oncologist's care at a different hospital - the "Ashby campus" of Alta Bates Hospital in Berkeley. Consolidation will "buy time" while we go through the hoops in search of a matching bone marrow donor. The chances of surviving that treatment run in the neighborhood of 40-50%. I am also told that my present insurance company will not be a chirpy friend about various continued stages of what may well entail the next 12 months of treatments. Sadly, that is not a typo. My gut tightens to write it. I breathe; I pause; I am back into the consciousness of manageable bites because that is the best I can do.

I'm shooting for a year without relapse.... and then more. If I live to the 5-year mark, I believe I am considered "cured." Talk about showing up as best I can for "life on life's terms" with absolutely NO control over the results.... other than asking for more of YOUR prayers, candles, good thoughts, breaths. I am not sitting here in remission by chemotherapy alone. My home prayer flags - the cards adorning my walls here - remind me of an interconnectedness of love that yanks me out of the illusion of my aloneness and into holy belonging. 

I'm fifty-two today. I assumed without fanfare that I had another 20-30 years. Shortly before my growing fatigue turned into AML, I was distracting myself with treating the age spots on my hands (yeah, I confess) and wondering about Botox.... about working out more and tightening up those flabby thighs. Of course exercise, a healthy diet and positive outlook on life are 150% important, yet I've taunted myself all of my life needing to be better, which is code for a dearth of self-acceptance. Life in Christian community, in my 12-Step rooms, in the lives of precious friends.... all have coalesced to bring a greater peace even while the ever-present niggly-bits gnawed away. I'll think of death later... 

No, we'll think of it now.... and a life worth living, one day at a time.

So I'm giving it another go, this time with a deeper sigh of peace. For those of you who have prayed for my clarity and serenity the past two days, BLESS YOU a thousand blessings. 

What do you see in the reflection?

This is a reflection from the mid-19th century windows in Ali & Tony's Scottish bothies.... a sweet little face. "Isn't he lovely?" Tony wrote. He is. 

Intending to extricate the "real" from the "imagined" is on my plate today. I met with a gentleman I have asked to be my new oncologist, a doctor from Russia coaxed from his last work (including the academic) in Michigan to Alta Bates in Berkeley. I recorded and took notes in a 90-minute session that covered all manner of options for my next steps that find my head swimming right now. I am being asked to return for consolidation chemotherapy in about a week's time. The bone marrow biopsy of 11/24 showed a blessed repeat of "zero blasts," and yet this clear hurrah is tinged in the expectation that my remission is a ticking clock with eventual relapse awaiting non-action. 

Another reason I chose "Dr. K." is because he performs bone marrow transplants, a rigorous series of procedures my soon-former oncologist does not oversee. As far as I can understand today, consolidation alone with my collection of non-ideal variables which include the MDS and some cytogenetic abnormalities results in a pretty low prognosis for making it to the 5-year mark. Some consolidation (another 3+ weeks hospitalized) with focused plans for a bone marrow transplant give me my greatest chance to live.... well, to live. 

I am in remission today. "If we stop now, the disease returns with a vengeance," the doctor said. 

Death by graft-versus-host disease is not a minor risk in bone marrow transplants, particularly for me as we'd be seeking a non-related donor from the national bone marrow donor program. The percentages began to blur at that point for me. At no point were they particularly high.

I have 48 hours until I promised I'd contact Dr. K. and commit to a date for the consolidation sometime next week. "Can't I enjoy Christmas with my Church?" I asked. I was probably begging. He was somber, sincere and not patronizing when he shook his head. "I really don't want to. The risk of relapse prior to consolidation is not something we want. Now is the time." What I did not share in his office because it did not hit me like a soul hurricane until I walked out of it is that I am not 100% committed to this plan of action. This is a risky thing to write in a blog, to share with close friends. 

I cried all the way home, not a good way to drive through downtown Berkeley. "I've had ENOUGH!" I sobbed. Will this stick or is it a momentary emotional overwhelm, surely easing when it is time to Be Good and Sensible and step up to what is next? Today I'm giving it permission to wail and grab me by the guts. What attitudinal shifts will transpire between tonight and Wednesday?

For those who have wondered, incidentally, I was told that the course of action for my Induction phase was 100% standard. Any oncologist worth his or her salt would've done the same thing. There was no personal cocktail just for Diane. Imagine that! 

This disease sucks. How I embrace a life worth living.... I will share as it unfolds to me. And I will share honestly.