Wednesday, December 31, 2008

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. 

Sunday, December 28, 2008

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. 

Friday, December 26, 2008

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. 

Thursday, December 25, 2008

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. 

Tuesday, December 23, 2008

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.

Thursday, December 18, 2008

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.  

Wednesday, December 17, 2008

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

Monday, December 15, 2008

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.

Thursday, December 11, 2008

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!

Monday, December 8, 2008

$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......

Wednesday, December 3, 2008

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. 


Monday, December 1, 2008

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. 

Wednesday, November 26, 2008

Here and Now as best I am able

(If you click on the image, it'll load with more oomph).

I am quietly astounded with gratitude's ability to come in different sizes. To have awakened in the night only once for the first time in five weeks - heaven! For me proper sleep is non-negotiable; I become borderline psycho in its absence. Even on this summer's mostly magnificent road trip, sleep was rarely a stranger. I feel a return to groundedness surrounded by fluttering thank you's. Thank You, God!

Monday's visit with Dr. Doom was interesting. I was prepared for another blood test - I mean, that's what they do with me - and wondering how I would beg/plead/negotiate for staying OUT of hospitalization Round Two through Christmas. I had that body armor of knowing a battle was brewing and unsure of my tactics. 

Silly me.

After waiting an hour, he asked the nurse to draw blood and then announced, "If your counts are good, we'll do another bone marrow biopsy today." Now with all the glories of Pavlovian conditioning, the mere mention of those words has tended to find me involuntarily shuddering while eyeing the door. I experienced two surprises: Not only was this third bone marrow biopsy not expected, but my body did nothing in anticipation. My mind simply registered the words. My inner editorializer mused, "After what I've been through, another needle in my butt bone is just what it is. So what!" I have also taught myself that with or without a narcotic, the procedure still hurts like the dickens. Why be spaced out, hung over and in pain? I did my normal hollering which included such pleadings as, "..... please please please finish please...." He did and I was gone. 

My blood work was normal. I almost cried again. I haven't seen numbers like that ever. After several years of my white count dog-paddling in the two-range ('normal' is 4.5 to 10), seeing 5.7 startled me. Even my platelet count is a TYJ 151! Normal is 144-390. I was receiving platelet transfusions in the hospital every time they dropped below 20 - all told, probably close to half a dozen times.  

I will change oncologists in the coming weeks because I need someone who will compassionately treat all of me. This includes education as well as orchestrating the mechanics. I need a talker. My current oncologist, while brilliant, is not. As well I did not choose him but landed in his office in disarray while my original hematologist was on vacation. I'll share more about who I feel led to step into this role. In the meantime, I continue to feel so liberated that tears erupt without warning. 

I have taken nearly all of the beautiful cards I received while hospitalized and put them up at home. There is one small gaggle in my bedroom along the wall-to-ceiling border. In the moments before I shut off the lights and allow sleep to visit, I think of the love and prayers that have come... and am struck humbled, grateful, alive. 


Sunday, November 23, 2008

Will you take me to see the Wizard?

It's Sunday night in my little Berkeley "hobbit house." It's little because it clocks in at less than 400 square feet (as do some Manhattan lofts)! "Hobbit" because while I'm not about to get out my tape measure, the ceilings are less than standard height. The living room skylight adds some height and eases an edgy I live in a box feeling.  "House" because it is not an apartment, duplex, room in a Real House, yurt, English Country cottage or something quaintly similar. It was advertised as a cottage. I have called it various things, from shack to cabin to bike shed. After a distant sociological experiment in a very spacious apartment surrounded by every imaginable n'er-do-well (don't get me going on the nutcase with the shrieking parrots right underneath me), I decided to trade size for privacy. I have neighbors in the front Victorian duplex I really LIKE. Here I'm surrounded by yard. It's quiet. It's funky. It works today.

And it beats the hell out of a hospital room!

I feel tremendous gratitude to be here. This is an opportunity for more than a few of my good friends to snicker, since I have indulged in whining and wailing about it ("I want a real house! I want to move away!") for at least 2 years. But you know, while it has not gone through a startling transformation in and of itself, I am very GLAD to be here

I am not hooked up to an IV pole, with things dripping into my veins I hadn't specifically decided were a fun idea. But that's the deal when one signs and sighs on for medical care. "I agree to let you treat me.... and here's my arm." I don't have to ask to have some smuggled health foods carted out of the fridge in a pantry I cannot step into on my own. I can sleep in my own bed, although doing so through the night eludes me. I've put my work on hold right now, so I'm not shattered by that seeming inconvenience. I'd rather awaken here than there.

I went to my Church this morning for the first time in a month. I tried on outfits the day before to make sure I had something glamorous enough to match my jet black cap snugly covering my now hairless head. What was dodgy, though, was the 18-mile drive over the I-580 bridge to San Rafael. Normal (pre-chemo) faculties would find me chattering on my cell phone - earpiece, only! - while sipping coffee, messing with the CD player, rusting through my purse with one hand and just being rather zippy for the most part. This morning it took all my concentration just to drive. I was humbled and not a small amount nervous. 

I started getting teary-eyed 2 blocks from Church. These are the people with and for whom I've sung for 5 years nearly every Sunday save for my summer adventures when the choir takes off. This is where I've donned a starched white alb with cincture (when not singing) and served on the altar as an acolyte - Eucharistic Minister is the official term. These are some of the people who have prayed for me, some multiple times a day, since I was hospitalized on October 27th. These are people who know I'm a bit odd and love me anyways. I was so welcomed back. I had tears during the service. I took Communion for the first time in a month. At the Passing of the Peace, where people scurry around hugging one another or shaking hands while mumbling, "The peace of the Lord be always with you," "... and also with you!" Hug hug hug. "It's YOU!!" I wasn't expected to be there. I was welcomed with cheer in their smiling faces. 

I'm moving at half-speed. An hour's fun errands and shopping with Stacey yesterday wiped me out but scored four more colorful scarves from local Tibetan shops on University Avenue. I'm home for now. I can stretch, walk, do my own laundry, shop for yummy food. I can think about Thanksgiving and, if I have the oomph, a Recovery Retreat with "Sister B." beginning the next day and lasting the weekend. I will carpool with two friends if I feel I can go, an admittedly lame confession (well enough to go on retreat? ahem...). I meet with my oncologist tomorrow at 10 am to talk about Next Steps. And this weekend I have not been on one single medication. Freedom!

I find that freedom is relative. I have coping mechanisms for institutional settings. They're designed to help me cope and their cost is my autonomy. I do have some good muscles for being the now-revered pain-in-the-ass patient. If something is off, which thankfully is rarely, I badger for information or outright refuse it. I also try and connect with the medical staff as people, which is how I expect them to treat me. I'm not just "the leukemic" - I'm Diane. Damn, I hate that term "leukemic"! Not that noun; the other one - I may have leukemia (presently in remission!) but my selfhood is not encapsulated by it. 

There will be more treatments. I don't know exactly what or when or why. I will in due time. 

And then there is God's Grace. For that and for God's presence I am thankful.

Friday, November 21, 2008

Well, aren't you powerful ones.....!

..... who pray, who visualize, who dream, breathe, meditate upon, cross fingers for, create good intentions for... all! The white blood cells, neutrophils, fevers and platelets shrieked in the presence of your strength and hightailed their formerly resistant fannies (if you're British, this means bums) straight into THE RIGHT COUNTS!

I'm writing this from home

And I didn't get here by myself. Will you please stand up and give yourself a round of applause? Pour a nice cuppa or a stiff one (I'm going to get cross-Continental hell here, but who cares), breathe peacefully or shout ecstatically - your prayers et al have totally helped me become SPRUNG!

Thank you! And Thank You, God. It's been one Mr. Toad's Wild Ride since Oct. 27th. I was released on Day 25 of this whacky and baffling episode of Diane Goes to the Hospital. 

The phlebotomist at 5:45 am was Nicole, whom I'd met once before. Kind, real, present. No one came into my room without a socially pleasing greeting followed immediately by something to the extent of, "I'm rooting for my white counts & neutrophils! Then I can go! Isn't that great?" People were getting pumped. After Nicole gently drew blood, she held the vial up to my glorious gallery of cards, photos and religious icons, making a slow sweeping motion from right to left. "Take in all this energy," she said to the vial. I blessed the sample with her. We wanted it to be a winner.

It was. 

While these are not the only things having been working in my favor, they were the most exciting for me personally. Of course I got filled to rolling eyeballs with IV antibiotics. And since Monday of this week, I was given one shot a day (subcutaneously) of Neupogen and watched the fireworks of white count boosting on a daily basis. Was this a quick fix? Of course it was. Will my counts go down to some extent now that it's been removed for now? Yes. Neupogen has been used, studied, put in clinical trials, argued over and finally accepted after many years. I didn't care that it was a booster shot. It was my ticket, and as much as I hate needles - and received continuous opportunities to encounter this attitude - it came at the end of one. Sometimes painfully. This is already with the IV deal going. In 5 days my overall white blood count went from less than 300 (.3) to nearly 5000 (4.9). I don't ever remember getting a blood test in the past 10 years with that number! We rooted for a thousand and quintupled it! And the absolute neutrophil count (ANC) which was practically unchartable right after the chemo (meaning ZIP) went from nearly zip to 354 to nearly 3000! We blew past a thousand so fast it didn't see us coming!

I am so so so grateful. (Perhaps we could form a Winning Lottery Grand Prize Manifestation Club!)

I'm also pleasantly tired. 

I get to sleep in my own bed without being tied to an IV drip. I will be able to awaken without some cheery nurse coming into my room around 6 am to do my vitals, preceded or followed by someone drawing blood. I will not be asking nicely to have the borrowed thermos from Stacey filled with boiling hot water for the PG Tips tea Ruth & Davy sent me from Rafford, Scotland. I can boil my own water. I think I want a month to sleep in, just to show my body that I can. My friends around me continue to offer their love and 3D support (shopping, chores, walking partners, etc). Wow

My friend Alan picked me up by 2 pm and brought me home. We stopped en route at a local barber's college to get the remaining 94% off of my head. Since I am ordered not to use a razor blade (bleeding issues), it's not Mr. Clean clean but we won't dwell on what it had become. We then raided the local Monterey Market (a Berkeley legend) for food, glorious food. My favorite coffee place for fair trade Sumatran since I'm ready to train to become wired again, then the Hopkins Bakery for a sugar cookie shaped like a turkey. That was IT. Tired Diane was brought to her little place and writes to you from here. 

I'm still in the woods but I am no longer quite as lost nor tangled in a brier. And I can see a lot more light. 

I think I'll walk towards it now..........

Thursday, November 20, 2008

a request for an added visualization!


Please keep visualizing 1000 - and add neutrophils to the white blood count. Oh the details! The suspense! The tearing apart of my will! The WBC actually has several components - the neuts are the fighters. Perhaps they can be doing a more non-aggressive form if you prefer (Aikido?) but there you have it. The absolute neutrophil count (ANC) has joined the party along with a perfectly normal temperature. Nurses are here, catch you later!

Wednesday, November 19, 2008

Sunny days and surprises

I have been thrilled by two things today: One, that my WBC has gone from 300 to 800! Go, Neupogen (it's a jump-starter). Please keep visualizing past a thousand! And two, one more pump on my IV pole was removed. There's only one now and not three! Just walking down the corridors with a far easier to maneuver piece of hospital gear gives me a lift. I'm rootin' for Friday; I'm praying to be sprung in 48 hours. I would so like that!

Part of my healing has included the care of my dear friends Alison and Tony while on vacation
in Madeira. They texted me internationally daily and brought me along on their holiday! This is Ali poised graciously on the rocks. They work their butts off year-round managing their historic holiday cottages adjacent to the Findhorn River. As well Tony is an amazing contractor/carpenter and Ali a skilled psychotherapist. One of my favorite expressions of Ali's is, "Get real!"


My hair is 90% gone. I've been wearing caps day and at night.... scarves, too. I will have it shaved sometime soon, although I suspect I won't be able to until I leave. Yes, I've asked the nurses.... they're not allowed to do this and there ain't a barber in sight. Yes, I am pissed off. However, a shining light of cheer is Tony (where if you rent one of their Scottish Highland holiday cottages on your next vacation, you will likely never stop thanking me for the suggestion). This is his imitation of a Saudi hit man - in solidarity with my new scarf persona. I will wait now for any and all commentary on my gross political incorrectness. (If you're of Middle Eastern descent, I do apologize if I've offended you; otherwise, get a life). 

Broadly, I'm on four different antibiotics. I'm on a hydration drip as well with various bits added like phosphorous and potassium that have to be kept separate from the antibiotics. I presume I would explode or something like that if they dared commingle. I take other pills by mouth. And my PICC line, which joined this party at the very beginning and which has let the goodies in while being an innocuous vehicle for the daily blood draws (sometimes more!) has been removed due to infection. The good news is that I have another line going directly into a right-hand vein. The bad news is that it took five tries, two .5 mg. (that's point five) lots of Dilaudid and not a small amount of hollering. 

Another thing helped me today, encouraged by my raised spirits: Asking others how they are doing. I may have moments of listener energy, where others feel safe to share. A couple of people did that with me today (staff!).... a blessed series of minutes where it wasn't all about me

Marilyn & Cindy sent me a squishy teddy bear named Howard, Anglican prayer beads and..... a gorgeous hand-knit scarf with two matching caps! From Marilyn's sister. My mind reels at this gift of extended family. 

Oh, and Howard's etymology? Our Father, Who Art in Heaven, Howard Be Thy Name.....




Sunday, November 16, 2008

Hollywood calling

I'm still trying to entertain and impress. I can tell because I resist communicating about the past several days of spiking fevers and spending way tons of time in bed. It's amazing how easy it is to do this when it is the wiser of more immediate options - for example, having a scintillating stroll down the hospital corridors (I almost typo'd 'horridors' - I love how quaintly Freudian are my errors) accompanied by my 2-3 pump IV pole. If its base was more solid, I'd hop on it and .... what, skateboard?.... Careening into the walls would not be too bright. So yes - I fantasize about play and allow bed rest. Today my Findhorn Angel was "Relaxation" - and my new one (they are on GMT after all) is "Wisdom." I can be wise, even when I'm not particulary  entertaining. 

That's Dick Wezelman's job (the handsome man in that t-shirt). He and his wife Beany travel the world collecting ethnic artifacts which they sell privately from their artsy Berkeley home several times a year. Full of life doesn't begin to describe them. They came by yesterday bringing an earthy feminine healing statue from the Congo and some TJ's chocolate (did I say I have enough chocolate? I am luxuriating in abundance!). They will return tomorrow with a load of washed clothes for me and some homemade organic beef stew. After 22 years, I'm back on the red stuff, as long as it had a conscious life. 

I rarely had fevers before, it seemed, although I can look back with as much bias as anyone. But fevers are weird - you space out and heat up. And the strangest thing helps them - Tylenol! Honest, I didn't know that. I'm a folk remedy aficionado..... garlic as nature's penicillin, apple cider vinegar and honey hot drink, fresh organic foods, gazillions of immune-building supplements, anti-oxidants. [Ok, so I have a little strong coffee and chocolate jones....]. However, having multiple antibiotics dripping into my veins isn't something which with I readily resonate, so I do what I can in the absence of a complete internal transformation - I detach. Big time. In these series of moments I find that very useful.

I'm rootin' for 1000 - and I hope you are for me, too! That's the magic number for my white blood count to rise to to get me sprung from this joint. The reds are holding their own, which is nice. Platelets are a bit manic-depressive (had another platelet transfusion today). Whites were the baby thrown out with the bath water in chemo guerrilla warfare - and now they need some coaxing. Come on, white blood count! 

Thursday, November 13, 2008

a little more clarity, briefly


0% blasts means that the chemo worked. It killed the leukemia cells. But full remission requires also that my blood counts rise to normal before I am discharged - ideally in 7-10 days or less. (I'm rooting for less. I want OUT). 

Consolidation chemotherapy (round) two is more of what I'm going through and with higher doses. They want to make SURE I'm in remission. 

Onward!

Wednesday, November 12, 2008

Life is contextual

I have no idea where I come up with these goofy titles but I let 'em rip. There is always enough of a duh element to them where I roll my eyes and think, "...and..?" If I can divide the irony from scorn, some more gentleness may ensue.

So it's been an edgy bit wondering about the results of yesterday's bone marrow aspiration, for which I was given 2 mg. of Dilaudid and spent the remainder of the day lost in space. 

"You'll be a little groggy," they had said. 

"Really?" asked doubtful moi, recalling her low-tolerance-for-substances days. "For how long?"

"Three hours, maybe," they said.

That was how long I was practically out cold. The rest of the day and evening were in a lollygagging haze of oh it is so very nice to rest here

The Question of the Day 14 bone marrow aspiration was: How many leukemia cells were killed? We were shooting for 5% blasts or less, although my doc said, "We'll take 10%, we'll take 20% and deal with it." I'm a complicated case because my AML came out of the MDS. Right at this precise moment, I'm not really in the mood to be terminally unique. But so it goes. So I've boomeranged and crawled between morbid fatalism, gross uncertainty, a detached nonchalance and the realization that I am just not fully understanding what's going on here. If the chemo didn't work, one option was to repeat it before I was discharged from this portion of the show. Neither my doctor nor I wanted to go there. It's poison. Too much is, you know, lethal. 

The doc came in by 5:30 pm looking tired. "You look tired," I said observantly. He is edgy and moody although as far as I can tell brilliant and highly competent. I forgot what we even talked about before I said, "Well? Are they in?" 

"Yeah. Zero."

I looked at him. "Zero blasts?"

He nodded, but his demeanor was distracted. 

"Isn't this GOOD NEWS???" I said. "It is, but full remission means no blasts and a return to normal blood counts. Yours have to come back up, and that is one of the complications of having the MDS." He then went on about drug treatment for the MDS, going onto the National Marrow Donor Program (NMDP) since I have no full siblings who are living (my little brother David died in 1967), the antibiotic cocktails I'm getting to keep me from keeling over right now with no immune system worth spitting about, other things. I felt as though I should be happy but couldn't quite leap into excitement.   

Now that the headlong into another dimension whirl is shifting into more present-minded consciousness for me, I can begin to do some focused research on my own. Trying to be proactive in that regard while dissociating in a chemo gut- and mind-wrench wasn't happening. Clearly I will not be spoon fed every aspect of this journey, as much as I would prefer that in tripled ample servings. I bought an expensive Moss Report on AML that Stacey busted her you-know-what to wrench from FedEx for me; 475 pages and nearly $375. I have websites, print-outs, brochures. And I get to weave it in with perusing cancer headwear sites, since the hair fallout has begun. Just when ya get over the chemo, more shit happens.

I hope to be discharged from this induction phase or whatever the hell it's called by the weekend of the 21st-22nd. I thought I'd have a month off - freeeeee as a birdie! The doc said 2-3 weeks. And then it hit me: I'll be in the hospital for the consolidation phase (more of the same) for Christmas.

And that really felt awful

My liturgical and participatory Christian faith is core to my life. Preparing for Christmas through Advent, practicing our hymns and anthems with my choir - that's my food, my manna. {Breathe}. I have to detach to deal with this. Oh yes, I then thought, "Yo ho ho, I'll be a jolly little singing elf and bring carols to 2North!" Of course I can, but I'm not ready to be that noble today. I will ask for guidance. 

Again, every single email and card (you should see what is here!!) and gift bless me. Bless YOU for blessing me so! My heart seems to want to leap and not know how high. Local friends do favors like rescue a now-functioning cell phone or bring yummies from Whole Foods (you know who you are). Yes, this sucks. And there are angels and miracles and love abounding. 




Monday, November 10, 2008

Meanings and moments

It's cat-and-mouse with my mind, with whom I've shared a most cantankerous relationship for much of my life. Right now, in spite of two different antibiotics flowing into my veins and awaiting a 3rd (you see what fun I can have between 10 pm and Midnight), I feel at peace. When I think of the Day 14 bone marrow biopsy tomorrow, my guts tighten. What you focus on expands. Yeah, alright already, I know that. So perhaps I can take a lesson from Stacey & Leland's kitty Sasha (a purebred Somali) - lie back and think of rainbows.  

I could also be enjoying surrender. Not giving up; not even giving in. This is what is right now. I believe in the Risen Lord Christ and His Redemption for me; I believe in the power of YOUR prayers; I believe that a miracle is a coincidence where God chooses to remain anonymous; I know that not everything can be explained. But this life is mortal. I could well beat this, by gum! Show 'em all what a rootin' tootin' fightin' overcomer I am as I have been! I could die tonight. I don't have a helluva lot of control after a certain threshold. I believe in positivity and even affirmations to a certain extent, but I don't think that's what this wild ride is about. I think had I known that I'd be given this absolutely slapped on the side of the face with little warning diagnosis, I might've ditched the hospital route altogether. And I did not. I'm here, being stuffed with so many high tech drugs than I've ever contemplated. 

I'm not unduly peeling back the allegorical elements of blood and bone marrow. This isn't say a benign mole that can be cut out; these be my insides, analogous to my core which I know is soul and spirit. I am open to deeper meanings, but in the meantime all I can pile on my little plate is what is in front of me from hour to day to onward just enough. I had a whackomania schedule with wondrous parts of my life all darting in and amongst themselves this fall. I'm one busy kid! Too busy! Now I can't even make choir practice. I miss Church, worship, the Eucharist, the movies, Sacred Harp singings, hikes in the hills, my friends, my 12-Step meetings. Perchance without too much denial, what their graces give me are here right now. I wouldn't recommend this as a long term venture, but so far.... maybe I'm simply having a nicer day than I have in a few weeks. 

Some people have asked about donating blood in my name. Yes, please, if that suits you. I don't know exactly how it works, but I am told that if you go to a blood donation center and give blood, and say it's for me here, it will help very much. You don't have to be my type, which cosmically or amusingly is the somewhat rare B-positive. :-). I have had perhaps eight blood transfusions and 3-4 platelet transfusions since I arrived. This is too unreal!

Someone asked what I did to spend time. {Aren't you bored?} Hah! This is basically a 5:30 am until Midnight (if I'm lucky) deal. The care is frequent to constant and often overlapping. It is endlessly repetitive and meticulous. I usually beg nightly not to be awakened at 4 am for vitals (temp., blood pressure, pulse and some weird deal where you stick your finger in a mousetrap and it tells you how much oxygen you have). There are some angels in here. There are some truly annoying folks, too. Life! Ya just can't get away sometimes. 

So from cognitive dissonance to druggy distraction to slightly displaced altered states to jolts of acceptance to God's pure and enduring grace, here I am. Like Abraham said - and I'm not nearly as cool as Abraham - 

here I am.



Thursday, November 6, 2008

Grace, but not terribly graceful

Note: This is not me. 

Every single beautiful card, every heart-bursting email, every call - your love and prayers hold me when I'm huddling under the covers. This is a short entry to say simply and clumsily that I am very sick. Chemotherapy is a poison and it's sucking the life force out of my immune system before my soul and body decide to raise themselves once again. Sheol. Toxic unknown. 

I am not able to answer emails individually right now. I am not always able to pick up the phone or return calls. I will not write every day in this blog - this isn't my "Rebecca of Sunnybrook Farm" testament to my enduring pluckiness. After 7 days of 24-hour chemo, the side affects are coming. I am told that as bad as I feel now, it's going to get worse. 

The love and support I am receiving from you are beyond my doofus-y burbles, which is sometimes all I can cough out. In my 52 years I have never been in a hospital. I thought I needed a new gym or new pair of jogging shoes and some iron supplements. Seemingly out of nowhere it was acute leukemia leaping out of the bushes. Evidently that's what it does. It's hard for me. 




Tuesday, November 4, 2008

incredibly much larger hope

I voted by mail before I was diagnosed. (Barack Obama, obviously, if you know me!). I've been sick at heart over much.... this country's demise, the string-pullers, the darkness.... my own darkness. But there's hope out there, well past the bumper stickers. I can feel it tonight. It reminds me of my time at the Findhorn Foundation when "WE" meant something that could be felt. On a day when I hit a bottom not worth burbling about, groans of multiple wretchednesses, this evening I can feel a swirl nationwide and think, (1) Blimey, it's not all about me and my stuff and (2) There is hope. I can remember to put Jesus into the mix, too, 'cause He's part of it for me. 


Sunday, November 2, 2008

holy selfishness

I'm going to share some deep wisdom from a friend...... part of the blessed cascade that gives my soul and course extra breath. I will do so anonymously. She'll know who she is when she reads this: 

"You are very dear to me, even though we've not spent much time together. I have not told very many people... about my history, but I am going to tell you. I am a cancer survivor. In 1994, I discovered to my utter horror and disbelief that I had a brain tumor. I had a CT scan one day.... went to a hospital that afternoon, was admitted the next morning and had a craniotomy the next day. Wham. Bam. Thank you Ma'am. It was fast and hard to take in. It's a long story, but the gist of it was that it was the most malignant brain tumor known to exist, with grim survival rates. I underwent a year's worth of monthly chemotherapy administrations, wherein I had two surgeries each month. (Read: I was in and out of the hospital for over a year, staying four days with each admit). I should've gotten my own parking space.

"{I heard that}...you were saying "no" to the morning treatment plan, and I said: "good for her!" He looked a little surprised. But you need to be in charge of what happens to you. It is your body. One rule I had for myself was that I would not allow anything to be done to me without my consent. Frankly, the medical community is not beholden to my kind of patient. But, I think the patient who manages her treatment is going to be a lot stronger during and after treatment. So you go girl. Perfect the art of being the "patient from hell." And if you want more advice in that regard, just ask! It is an art-form that I've perfected. Not that I'm bragging or anything.

"Another thing I want to say is to remember that you are going through something physically and psychically horrific. In other words, don't worry about ANYONE ELSE. I mean that, sincerely. Let the people who love you, love you. People will respond in all kinds of ways to this, some ways more helpful than others. But it is absolutely your job to take care of yourself. It is absolutely NOT your job to take care of anyone else. Let {us} do what {we} can, and say "No" if you need space, or just don't want what they are offering. Politeness be damned. You're sick, and this is all about YOU. PERIOD. END. OF STORY. (Read those last sentences on a daily basis, it will help you feel strong!! :-)

"And that begins with me. Take or leave this advice. It is just that I've been in that bed that you're in and it is scary and lonely. And over the year, I found a few ways to stumble my way along, and thought I'd pass them your way. 

"So, my dear. You must be exhausted. I will end this lengthy "How to survive cancer, part 1" chapter. I will hold you in my thoughts, and carry you to God in my prayers. God will listen. God will hear us."