Good news!!

While there await 1-2 more tests whose results will nudge this guesstimated 92% to fully positive totality, I remain for the most part in remission. This is really GOOD news!

My counts continue to rise, a clear sign that my soul essence and body continue to choose wellness over stagnation. My platelets alone were over 100 today! (They were 17 when I landed in the 1st oncologist's office last October with leg bruises and gum bleeds - normal counts are between 150-450; all of these are x 1000). 

I'll meet with Dr. K. again a week from today, Friday the 6th of February. While the search for a bone marrow donor has finally begun, it could take several months. I am told that until that time, I should receive Consolidation chemotherapy every 4-6 weeks to keep me in remission. It is probably quite clear that I will push for as much time between hospital stays as I can wrangle. As well I will seek a next Consolidation at UCSF rather than Alta Bates, since it feels wiser to spend time where I'll actually be receiving the bone marrow or stem cell transplant. Today I'm poised between the two medical facilities, which is already demonstrating some communication blips. I need to reign in as much confusion and sloppiness as I can. This AML is already enough of a pain.

Tonight I smile. To all of you who pray, send goodness and send words of wisdom after these posts or in emails or etherically - oh thank you ever so much! 

run, Toto, run!

We'll see what the doc has to say - I'll know important things within 2 hours. I may write about it over the weekend. 

For all of you dear ones sending good thoughts and prayers, I can feel your presences - thank you.

I am dancing with both a quiet peace and short-breath fears. I have heard that in nightmares, especially lucid ones, it is best to turn and face the monsters. We'll see how well I do.

I don't think this one bites

For you balanced souls out there, never ever tormented by the irrationalities of life.... for you "normies" and Type B folk upon whom many a skitterish Type A obsessive-compulsive nervous person might lean.... you can skip this part. It'll probably be boring. You probably aren't even twisted enough to be intrigued now that I've written that. 

Since I stumbled out of 25 days of Induction chemotherapy in late November, the pile of bills which awaited me had me in a full-scale panic. I was stuck, deer-in-headlights terrified, heart-palpitating whacked. Of course my insurance policy was in force. Of course those mean and disreputable sorts should have known that I was being kept behind metaphoric bars in the hospital. Regardless, I had a visceral and irrational avoidant reaction to the bills. In the past two months, I managed to re-arrange the pile and even start some file folders. All I could think was, "Some of these are wrong and I don't have the psychic energy to make them right. And I'll be damned if I'll let those bastards mis-bill me!" I'd already sic'd my Claims Rep. on one lab for trying to bully me out of $190.00 when Blue Shield had paid that in full in May of last year. I was 5 years old and some big mean kids were heading down the street right at me.

This may be considered an interesting (or perhaps pathetic) distraction from matters of life and death. 

Today something shifted. The bills were just pieces of paper with information on them, all entitled to some measure of response that would simply not suck too much out of my life force energy. In fact, I managed to access a spiritual plateau not before encountered. The twisted solar plexus had eased, the mental machinations had seemingly evaporated. 

I looked at the papers and with a calm detachment thought, "YOU can kiss my ass." 

Damn but that felt good! I do have a minor wad of papers ready for a break in the phone tag with my Claims rep., all under the auspices of '...and WHO do you think you're kidding?' 

One monster down. 

Waiting, breathing, being

It was my 5th bone marrow biopsy since the one in November 2007 declared "...findings of early or emerging myelodysplastic syndrome...," the funky bone marrow designation that at the time was not cancerous and held a purportedly mere 30% chance of becoming so. I vacillated about taking an oxycodone and am happy I decided against it. Bone marrow biopsies hurt, period, although I will escort Dr. K. to the front of the line - his procedure hurt the least of everyone else's to date. I have learned that the woo-woo drugs (e.g. variations on morphine derivatives) simply make me loaded and in pain.... after which I'm staggering around for hours. I took 500 mg. of Tylenol last night. The abundance of local Lidocaine and - dammit, I'll hand it to him - a more expert hand made it tolerable.

It is still a psychic invasion, however, and I spent the evening at home rather than scurrying to my cherished Sacred Harp singing up the hill in the Episcopal seminary chapel. I gave myself permission to recover, a handy growth spurt for a sometimes hapless Type A who seems hell bent on pushing herself into caverns of idiocy. Staying home also gave me the gift of connecting by phone with a bone marrow transplant survivor whose name and number were given to me by a friend from 12-Step program. This is my 2nd experience of connecting with a fellow leukemia warrior and feeling as though I encountered a long-lost friend. It's an odd, odd sensation. I wonder if this is akin to finding a battlefield survivor in a foxhole.... leaping past pretenses and breathing in a desperate connection. We spent 90 minutes on the phone sharing our tales until my late night brain began to signal its weariness. 

I made it clear to both doctor and nurse that whatever the results, I insisted on being told face-to-face and not over the phone. "Well, what if it's good news?" said the nurse. "Nice try, buddy," I said, "then if I don't hear from you I'll know otherwise." 

"Oh, right," he said. 

I do know that Dr. K. knows something right now, and the reason we're waiting until Friday afternoon to bring me back in is to have all of the information available such as cytogenetic results which take a few more days in the pathology lab. Dr. K has already looked under a microscope and knows something. So whatever remnants of Zen-like presence and 12-Step One Day at a Time wisdom exist inside of me get to awaken and show up. How un-obsessed might I be? How PRESENT may I be? Yes, I have a 16"x8" sticky bandage across my lower back but I can still walk. 

And when I remind myself, I can still pray.

staring over the abyss

This afternoon is a bone marrow biopsy with Alta Bates' Dr. K. This is the procedure whose results later this week will tell me whether I remain in remission (zero blasts) or have relapsed. 

If the leukemic blasts have returned after 50 days in two different hospitals since October 27th, two brutal rounds of chemotherapy and a half million dollars' worth of bills sent to my insurance company, then I will make my next steps with as much spiritual fortitude and soul honesty as I can. 

If you read this before 2:30 pm California time, I would love to receive some healing thoughts for peace and presence. These procedures are not known for being particularly pleasant. Thank you and bless you! 

Round and round the mulberry bush

It's been a challenging week.

Saturday morning is the Memorial Service for my friend Marilyn. Many in our small parish have rallied around her grieving partner Cindy. Our choir will sing for her and I will chant Psalm 46. 

Two very dear friends are suffering with cancers of their own, one with a recent breast cancer diagnosis, the other with a very rare T-cell lymphoma for whom the medications have debilitating side effects. My new friend Rob, a long-time (almost 5 years) leukemia survivor, has been in and out of the hospital for months. As for me, my chipper white counts of a week ago have plummeted from 3.5 or so to today's .8. That's point-eight. Not even one. Is this a "post-remission cytopenia" or a relapse? Monday's bone marrow biopsy will tell. Today I cannot fathom the idea of a relapse and a repeat of Induction chemotherapy.

It's been a shitty week.

I have not been an angelic devotee of the Triune God. I scowl. I bark. "Whatcha doin', picking us off one by one?" I've sneered. I have not worked a single Step of surrender nor counted my blessings. I've been a snotty, angry kid. From this space I have endeavored to give with parched lips and cracked heart.

A bright spot was wigging out with a dear friend from church. Literally. When the last of my hair went bye-bye in late November, I rushed around buying knitted caps and bright scarves. I do not go out in public bald. Julie had promised to go wig shopping with me, which at first had very little appeal. Time has passed and so yesterday we did after she had gone out of her way to research proper wig shops. The first wig I tried on brought up a globule of grief with the disconnect between putting on what used to simply be there. I wanted bangs (fringe to my British friends), devoid of the 'oh no!' repercussions of doing it with real hair including revisiting the 2 years it took to grow out my last flourish of those. Aside from the guffaws pointing out the $15 pink or platinum party wigs, we went through the high-end synthetics and on the fourth try found the keeper. Julie teared up; "That's you!" I cocked my head and played with its bouncy bob. I tried on a few more before we drove to a 2nd choice wig shop. They were closed and lost the $253 I then spent at this one in San Rafael. 

I wore it to choir practice that night to hums and smiles. It felt slightly odd and I smiled catching myself in mirrors. At the Cancer Center this afternoon, acquiescing to a blood transfusion due to low hemoglobin counts as well, I wore a cap. I don't want to be there and I'm not about to dress up for them. Aside from the low-counts fatigue, I don't think of The Illness if I can help it. It's spitting in my face when the nurses are trying to find a vein and hook me up for a 2-hour sit next to someone else's blood dripping in. Psychologically it feels worse than having been forced to swallow cod liver oil as a kid. 

I'm poised between two hospitals: Alta Bates in Berkeley with Dr. K. and his staff, and UCSF Medical Center in San Francisco where I met the head of their bone marrow transplant program on Wednesday. Dr. D.'s demeanor was gently welcoming, his brilliance not compromised when he explained things in a manner I could understand. I am moving ahead with the decision to seek a bone marrow transplant even while I feel fear and doubt. My chances of survival are crap with chemo alone. They are doubled but still marginal with a transplant. My head spins, my anger rises. My work and income generation are on hold while I've made a few attempts to step back into bits of its markets research here and there. 

Another friend is returning this week to her native Switzerland, this 14-year California chapter in her life closing with love and goodness as well as sadness. 

Aeons ago I would try to construct Reasons for everything, from death to illness to grievous errors. I'd get my sticky note cosmic rationale collection poised and ready for slapping on. I needed Reasons for everything with no exceptions. Today I have let that go when it is clear that I haven't a freaking clue what in the hell is happening. I don't know WHY Marilyn died last Saturday morning or why I have acute leukemia. Last week, leaving a Camaldolese Eucharist service with two new acquaintances, one of them told a story and then said, "Everything happens for a reason." I paused, took a breath and then disagreed, not with that vibrationally barbaric "I'm going to run over your belief system" fire breath but taking the opportunity to have a voice and then let it be. 

I feel oddly naked and unarmed to confess this. 

I wonder if strength and unarmed vulnerability, even weakness, can coexist. 

An obituary for Marilyn

..... is --->here<-----. 

As many in the entire world celebrate a new hope with the first steps of Barack Obama's Presidency, if you choose, I ask also that you remember (pray for, commit to God) the soul of my friend Marilyn Thompson: November 30, 1956 - January 17, 2009. 

This is her blue-and-white Rosary I took with me on my travels through the British Isles in the summer of 2006. This was taken in the restored Benedictine Abbey on the Isle of Iona on the west coast of Scotland.

Loss

I am in shock and mourning at the loss of a good friend from one of my California spiritual communities. That is all I shall say now. 

Damn, that was a really long post!

I think I can I think I can I think I can...

I knew I could I knew I could I knew I could.....

Ok, enough already :-)

Decision day and ahhhhhh

It's been enough to drive a gal batty....

One of the fascinating (sic) realizations that has come to me is that this what shall I do? slog could go on and on and on. Ad ridiculum (sic). Not a heavenly chore for wellness, which is returning in growing centeredness as of this morning. 

The short and sweet: After endless deliberation and investigation, I shall continue my healing path at UCSF Medical Center in San Francisco, who are on The List which took so many hours to uncover as being a "Center of Excellence" (COE) for an allogeneic bone marrow transplant (BMT). The "who's on first?" jugglefest of which insurance HIPAA policy has been given to Blue Shield of California. 

Unlike my erroneous comments a few posts back, the "auto vs. allo" game was not so much the issue as was finding the appropriate medical facility. Alta Bates can put me through the chemo mill (e.g. Induction and Consolidations) indefinitely, but it has taken far too many calls to determine that the three major insurers I was grappling with have virtually the same list of COE's and Alta Bates is not on them for a BMT. Now they have done a few over the years! Now and then. Mostly "auto." I wanted to know if my "allo" would be covered, without continued examples of the 2nd rejected appeal to Blue Shield that already took place. Simple question, you would think? Ask the hospital; ask the insurance company. "Fine. Blue Shield doesn't like you. Will the other two absolutely agree to this?"

It's been Convolution Central. It took Herculean determination and effort to discover that The List of COE's includes such known centers as City of Hope and Cedars-Sinai in L.A., Fred Hutch and UWMC in Seattle, M.D. Anderson in Texas, Stanford and UCSF here in the Bay Area. No one will assure me of the coveted pre-authorization today. But the next steps can be taken with its likelihood at least in this ballpark rather than a distant galaxy. UCSF has a stellar reputation. I have an appt. with one of the top oncologists there next Wednesday. 

Umpteen oodles of energy were expended on the insurance question, namely, "Which one?" For a HIPAA policy, there were enough across the board similarities that I came to feel that a coin toss could be a reasonable solution. I had Overnighted an app for Anthem Blue Cross to the agent last week, which I asked him to hold as the gathered information changed daily. My friends and I were working our butts off since Blue Shield had told me on the phone that my Dec. 11th application to them would be returned because I'd sent it in too early (!?), leaving me that questionable perk of having options. I should start having nightmares about details no one ever thinks about in regards to their insurance policy. The clock was ticking. The returned app remained MIA, which I found distinctly annoying. Blue Shield was still an option, but where was my paperwork? Never mind, must keep digging and calling and checking websites and... 

You see it coming, don't you?

Last Saturday, two fat packets arrived in the mail, with a Welcome to your new Blue Shield policy! brandished across them both. Little ID cards accompanied one. The bastards! I was torn between outrage at being told one thing and given another.... with relief. I was looking at an insurance policy that had been approved and was in my hands. 

My 11th hour flusters included determining that I could cancel this policy for any reason and at any time. That left Aetna and Anthem Blue Cross still in the running. More calls, particularly to UCSF, attempting to discern the insider's edge on who did the best job paying the bills. More mental mud. I began to revisit the belief that no matter who I chose, they'd both do their job and also be complete idiots, probably simultaneously. 

In the realm of codependency as well as attempted consistency, I wanted Dr. K at Alta Bates to really believe that I was loyal. I uncovered aspects of my character weaknesses that illumined an old tape that said, "You made this choice; don't leave. They won't like you." Judging myself for my life's past inconsistencies and lapses of commitment was eroding my ability to be sensible as well as intuitive. This discomfort crept into two visits before I made the final decision for UCSF. That I might not stay at Alta Bates was in the air. One up/one down was tiptoeing into the interactions. My experience of 'Diane the empowered patient' was becoming more erratic. I didn't like feeling this although I was grateful I was becoming aware of it.

Breathe. Pray. Ask. Journal. Jog. Ask for help. Repeat. 

Ironically, since I'd applied to Blue Shield myself, that left out the agent. It took a bit of squirming to get over it. I told him that I had to draw an intelligent line or risk my energies sinking into a quagmire, and thanked him for all of his efforts. He was gracious.

At $733/month with a $2,000 deductible and $6,000 out-of-pocket annual cap, Blue Shield is the most expensive policy. The others' premiums were $563 and $688, with lesser deductibles of $1,500. But unlike a you're so healthy we could sing underwritten policy, with an unlimited lifetime cap, this Blue Shield HIPAA plan topped at $6M (that's million) versus the others' $5M. If I live through this and past this, that extra million WILL come in handy. Treating this leukemia will wind up costing millions I don't have if I live long enough. And goodness knows that I still have my unpaid work cut out for me in making sure that the bills that have already come streaming in and the insurance company's obligations are fair and square. Now that part really pisses me off...... "Ees not my yob, mon!" 

Early L.A. sobriety taught me that the answer to "It's not fair!" was some cranky old-timer responding with, "The Fair is in the Spring, in Pomona." And now I'm hoping to become an old-timer myself. The cranky part I have already wired.

The good news is that I have finally made two decisions and can.... exhale and collapse! I can move forward rather than around in circles. More good news from earlier is that my lab work counts are starting to move up. At my last visit on Monday, I needed neither a platelet transfusion nor a Neupogen shot. I think this Friday's CT scan is still on. The Inauguration Day bone marrow biopsy is a question mark since I'm shifting from one medical center to the other and don't know how long that will take. But as my friend said, I'll probably go for the Oxycodone. It makes me a space brain and it does the job. As an example of the counts, from Friday to Monday (it was a great weekend in freedom!) my WBC went from 1.3 to 3.9. The ANC (absolute neutrophils) went from 789 to 3140. Some might recall that I was "shooting for a thousand" on both. Yes, I was released with marginal numbers... and thanks be to God for that!

I celebrated today by having my first voice lesson since the diagnosis, meeting with my Spiritual Director and then attending Mass at Incarnation Monastery up in the Berkeley hills. One of the attendees whose name I'm finally remembering began to ask if anyone wanted to go out for dinner. My isolator was out back as I responded with an unhesitant "Yes!" Three of us went down to Shattuck's Gourmet Ghetto and ate at Cha-Ya, a heavenly vegan Japanese restaurant (and I'm not a vegan). We gabbed and feasted. 

It's been an especially good day.

muddlement approaches resolution

Since I wrote on Thursday, the insurance information has changed on a nearly-daily basis. In lieu of writing bits and pieces, I am awaiting some manner of resolution and clarity. Attempting to arrive here has included but not been limited to three people - Chris, Alice & myself - expending no less than 100 hours over the past 2 weeks. Chris & Alice have been the stalwarts in this regard, although I too have been buried or at least felt buried. The insurance agent has thrown in easily another ten hours. Without a manner of healthy detachment, simply acknowledging the insanity portion of our show threatens to throw me into a tailspin. Occasionally it begins and then I breathe while I try to pull out of it. 

I found this outdoor labyrinth photo, which was taken at San Damiano Retreat House in Danville, California. It reminds me that if I keep moving, I won't get stuck. It also reminds me that there is a completion point that I can miss if I simply keep walking without awareness. 

My escapist fantasies are slightly cobbled by three medical appts. in the coming 9 days, amongst other things. Today is a blood draw at the Cancer Center and attempting to pepper either my doctor or nurse with questions, questions and more questions. My platelet count remains borderline and I may need a platelet transfusion. My white and red counts have been subpar and lethargic since my Jan. 2nd. hospital discharge, alas. Another Neupogen shot will probably be in the works. Friday is a CT scan. Inauguration Day the 20th I get a bone marrow biopsy. That's the procedure that is both excruciatingly painful (do I take an oxycodone 1st and ask for a ride back or do I just tough it out with the local anesthetic which never ever works completely?) and will tell us whether more leukemia cells known as blasts are on the prowl again. As I was getting daily Neupogen shots during this recent hospitalization, which stimulates all white cells including the lurking ones that are cancerous, we needed to wait until the dust settled so to speak before another bone marrow biopsy took place. While Obama is being sworn in and people such as myself are thrilled beyond belief, I'll be getting that wretched poke in the butt bone. I hope it is not analogous to anything but my continued slog in this healing track.....! 

Several dear friends have been shocked at my recent posts about the American medical insurance free-fall in forked tongue lunacies. Not only is it one badass storm but I am still in the midst of it. Resolution whispers hope not too far away, however. 

I pray I shall be guided in ways that I can live with, since having a life worth living is at the core of all of this. I pray for extended longevity in the 3D form so that the soulful aspects may be more fruitfully brought forth. Let's see what the next 24 hours shall bring..... and as well what I bring to it.

False impressions = back to square one

It all sounded so good and reasonable.... until now in the 11th hour there are clear insurance company pre-authorization designations between an "auto" (autologous) versus an "allo" (allogeneic) bone marrow transplant. Briefly, "auto" is from your OWN marrow cells harvested pre-chemo; logically, "allo" is not - whether a sibling, parent, cousin or unrelated donor, it's from an Other. 

And I am learning only now that few insurance companies like to cover that. Evidently it is considered experimental. Hell, and I thought "dangerous" was bad enough!

So I'll put off my remote beach grape peeling fantasies for now, as I leap back into the fray to find someone who will respond with clarity and direction. 

Thanks to Susan C. who I didn't ask before using one of her photographic images from an Italy trip in 2005.....!

through one tunnel for now

As a recovering perfectionist and control freak, I suffer with making really Big Decisions. And yet I am savoring having drawn a psychological boundary, wrapped this corner of the insurance madness admin and Express Mailed paperwork to an insurance agent (inadvertently linked awhile back, babbling about my soon-ending Cal-COBRA policy) for a HIPAA policy with Anthem Blue Cross. I'm telling the parts of me that could research this ad nauseum to take a deep breath and let GO. After awakening this morning with a pounding heart, something that's never happened to me before (OMG! The chemo nailed my HEART now!), I realized that I've done all I can and it's time to take a soulful breather before choir practice tonight. I will suck the life force out of my wounded immune system with this amount of stress.

I made a decision. I'm letting go.

Chris in Seattle reminded me that websites abound describing the gruesome horrors of, well, any insurance company (e.g. so-and-soSUCKS-dot-com). What worked for me in contacting and choosing this agent can be summarized in but not limited to two issues: 1. I need an ally who is a pro and 2. Whether I choose an agent or not, my HIPAA premiums are the same - meaning huge. Try $688/month for my age group. Since I'm living on tick-tock tick-tock savings anyway while navigating this altogether unpleasant medical trek, I shuffle this cost into my 'it is what it is' portion of my psyche. If I continue to insist on getting REALLY UPSET about things I cannot control, what questionable prognosis I have will be gunned down even more. 

En route home from the post office, I stopped at Andronico's, a local grocers. I'd been jonesing for a carbo fix (I admit it!) and trolled past the bakery section. The Cheeseboard Collective Bakery has one more day off; anything made by a coop and with organic ingredients can ONLY be good! Ahem. So on to default Andronico's, where I spied a deep dark chocolate chip muffin next to a [nice healthy] bran muffin. I was riveted by the chocolate chip muffin, but I couldn't possibly justify choosing it. I paused. Be good and be present looked at one another, more than slightly misaligned. 

I bought the chocolate chip muffin. It's really good.

I'll end this post like many of us close 12-Step meetings, since it's a learning opportunity that presents itself on a daily and even hourly basis:

God: Grant me the Serenity

To accept the things I cannot change, 

Courage to change the things I can

and the Wisdom to know the difference.

Amen.

mirage, muddlement and prayers for discernment

I am in the midst of attempting to choose a new medical insurance company under what are known as HIPAA Guidelines - it's a "Guaranteed Issue" policy as my current Cal-COBRA one ends on January 30th. I began this work while IN the hospital this last time, sending in a 12-page application to my current insurer, Blue Shield of California. However it's a whole new ball game when Cal-COBRA evaporates in a few weeks. The good news is that I am eligible for an exorbitantly expensive HIPAA policy here in California - one of a few to choose from with much higher premiums and less benefits. (Those of you with socialized medicine in your home countries, I hope you can give thanks now!). In short, while in post-chemo remission from leukemia, I am buried in admin attempting to make a decision that will affect my life, gleaning information from companies who - surprise! - contradict themselves on a regular basis. Were it not for the dogged work of my dear friends Chris & Alice up in snowy Seattle, I would be even more of a mushball of pitiful and incomprehensible demoralization, to steal a line from the Big Book. Aside from the terror maze of sorting through existing medical bills, I have essentially 24 hours from now (I've been at this pretty solidly for a week) to make a really HUGE decision. 

A core portion of this gut-slog is that few if any insurance companies seem to like my current medical center, Alta Bates in Berkeley, California, as a place for a bone marrow transplant.  My new oncologist has been recently wooed from a prestigious position in the Midwest. Alta Bates is not a "Center of Excellence," where bone marrow transplants are done and covered by insurance. In short, they don't "do enough" to be acknowledged - and thus I am caught in a Catch-22 of insurance regulations. They can treat leukemia and other blood cancers but NOT do bone marrow or stem cell transplants. I've appealed to Blue Shield twice for their refusal, hoping to use a "yes" as a reason to attempt to stay with them past Cal-COBRA and into a new HIPAA policy. In short - and trust me, this is as short as I can make it! - I expended deeply soulful and mindful energy to choose a new oncologist that in all likelihood I will not be able to continue working with because of insurance company lockout. Yes, there are other medical centers that deal with acute leukemia patients who are seeking a bone marrow transplant. And after the hall of mirrors energy suck of this dance, I may have to choose a new hospital and a new oncologist. 

This sure brings up life and death issues while I simply want to savor being OUT of the damn hospital. 

I realize that these issues are boring as hell - and this is as briefly as I am capable of summarizing them. I've been spending 8-12 hours a day on them since I was sprung January 2nd. Thank GOD I've also been able to meet with a few friends, attend a few 12-Step meetings, attempt two 20-minute jogs (woo-hoo!) and shop for my own food. I can make my own coffee rather than grab the nurse who's just drawn my blood at 6 am, asking oh so politely, "Would you please fill my thermos with hot water?" 

I do not like being institutionalized or hospitalized. I don't even have time "between Consolidations" to fantasize in great leaping arcs about running away!

So the visual of a labyrinth is a symbol of many things. If you've never walked one, please do if ever you have the chance. My first times were at St. Mark's Episcopal Cathedral in Seattle perhaps 10 years ago. There are two - indoor and outdoor! - at Grace Cathedral in San Francisco. Many spiritual centers and churches have them as permanent or even temporary opportunities for a powerful walking meditation. For now, without analogizing myself into the next stratosphere, one morsel of symbology is that looking at its entirety (what a jumbled maze!) is not the same as taking one step at a time in walking it. You begin and end in silence, passing other labyrinth walkers in quiet acknowledgement. Children run through it when there, which is fun for me to watch. I feel that I am embroiled in a tumbled mangled weedy puzzle while the only way through is to breathe and take one step at a time. "But but BUT!!!" The what if?'s can taunt me to hell. Having AML is hard enough, as GRATEFUL as I am to have some energy after this 2nd go in the hospital. "Not fair!" I cry. I shouldn't have to deal with this!

Surprise. Life isn't fair. 

It is worth living if I remember that I am loved and can love. I'd really like to have a clean E-Ticket for another 30 years or so. I don't. I don't know whether I'll live for a day, month, year or more. I don't know. There are times when a core truth is that I simply want to die in peace. I am fascinated by thoughts of the next dimension. I am less than thrilled with the minutiae and grunting agonies of negotiating this one right now.

I've noticed that I'm trying to end on a positive note and I'm struggling with that. O lookit here; life's really hard and I'm so dang chipper. I'm not. Please pray for me - for peace, for discernment, for present-mindedness. I receive and feel your prayers even when I am eyeballs deep in mud. 

Deeply grateful heart with tied hands

Bless you and thank you all from my deepest heart of hearts! I am awash in loving energies and prayers, so many emails, still unopened cards, sweet little packages..... so much so that I cannot respond to each and every one. I pray that your own gentle intuition will acknowledge my awkward yet thrilled return to some "freedom" while I cannot engage as intimately/personally as I would like..... 

And now that those neutrophils leapt over their minimum, I ask your prayers that I have courage, focus and patience to deal with a mountain of insurance-related admin. I am overwhelmed and daunted, and this is with a dear & cherished friend assisting me as an Advocate. I am freed from the confines of the hospital for frankly I don't know how long ....but it won't be long enough.... unless I breathe today. 

Again.... THANK YOU so much! Please forgive my sheer inability to respond one-to-one much of the time. I send a loving heartful wave of thanks to everyone who reaches in in all the ways that you do. I hope you can feel this within your hearts and spirits. 

Sprung!

Well THANKS BE TO GOD! I am going home today!!!

I will need a few adjustments, such as one platelet transfusion and a poke with the Neupogen before I'm out, but my angel neighbor Astrid will be picking me up mid-day. Putting away all the blessed cards and gifts will be joyous.... and there are some cards which arrived in the past few days awaiting opening once I'm home. I think I held off because I didn't want to "decorate" my room with one more example of loving support....I didn't want to anchor in a sense of 'at home' here in Room 4200.... I wanted to giddy-up corral it to my tiny Hobbit cabin off of Cedar St. here in Berkeley.

I'm going home today! Thanks be to God! And Dr. L. who said it was okay. 

I hear that patience is a virtue

I've heard of rather than practiced the art of being taught deep levels of patience...... and the very least I can comment about is my jittery awareness of how little I have when I want it NOW! is bellowing throughout my being. Out! I want out of this hospital!

There are times when I yell at God. I simply cannot have a "Higher Power" in front of whom I cower in fear - I've had enough of those dynamics in times past. To kneel in honor, yes. To adore when my heart is aligned, yes. But today is not one of those days. I'm not only yelling at God, I am shaking my impotent fists at my lazy-assed white counts. They're moving, but dammit, they are moving at a pace (if one could call it that) which infuriates me. It's called way too slowly.

The good news is that they have reached a level where I can be UNHOOKED from the dreaded and loathed IV pole, complete with its saline solution and antibiotics. The on-call doc is about to enter my room at any moment... the irony being that he is my original hematologist who diagnosed me with the MDS over a year ago.... that funky little bone marrow "disorder" that I thought would just whine in the background while I galloped on into the exuberance of a reasonably long life span. You know, into the wrinkly mid-70's or something like that. 

However I digress in my nervousness. I am a self-willed and extremely independent woman who feels reduced to a 4-year-old begging to go outside and play. Please. I feel so good. Please let me go home. THIS SUCKS! I am a freakin' grown woman! And then I hear stories of sepsis and it sounds worse than one of those outer space creepy-assed things that wound up on either Star Trek, The Next Generation or The X-Files. Evidently you don't die of leukemia, per se; you die because the cancer cells crash the party and throw out all the good guys keeping you motoring along as one does if one is fortunate. Bits stop doing their thing one at a time, and evidently it gets quite ugly. Dying quickly and painlessly has always been in my back pocket of 'I think I'd like to breathe my last this way'. 

Not a small amount of freely associative babbling while I just want to go home.... for now. 

Here's the latest: If my Absolute Neutrophil Count (ANC) bypasses 600 tomorrow morning, I will be able to leave here Friday. Tomorrow. For one more day I will breathe, pray, write, glare at some of my medical bills, call beloved friends, and hope that the ANC (an elite portion of the WBC) will really get a move on. 

I am told my progress is "excellent." It's doesn't fully land. I will see if I can embrace an honest 24 hours that includes my desperate desires to enjoy 'the simple pleasures' of a free life as well as be present for whatever lessons continue to poke, prod and otherwise drive me batty. 

I know I've been chanting "1000" and asking you to, as well. It's down to a barer minimum now, which I pray arrives by tomorrow morning's blood draw. ANC - let's GO!