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.