Significant changes are in the process of unfolding. This affects my well-being yet it is NOT a posting about my health, per se. I ask your prayers that I hearken to wisdom in next steps and God's peace as I discern them.
Wednesday, September 30, 2009
Tuesday, September 29, 2009
When I focus on the One in Whom my fears ebb away and vanish, I have peace. Five breaths later may find again my hamster cage brain in fritter-dom, but when I remember Jesus, the edginess melts.
Been seein' a lot o' docs the past two weeks, from the Roswell area boop machine folks to the North Carolina Clinic to my Atlanta oncologist yesterday. Last time I saw Dr. H., nerves were frayed and tummy butterflies were scrambling into overdrive. Yesterday I met with him for a frankly obligatory check-up and check-in, with a bottom line assurance that All Is Well (as well as can be, considering). It's a consciousness lesson after all amongst other things. One of them is called, "How can I think of leukemia and not slither into a pit of fear?"
I'm learning step by step.
When I'm at Church, I'm God's Kid. When I'm singing in the choir, I'm Choir Girl - et cetera. I'm not Choir Girl with leukemia.... I'm singing and learning and wishing I could sight sing better and on and on. But when I'm sitting in a conventional doctor's office, the AML seems to swell and begin making Halloween noises. Booooo. Booooo! And I say The Jesus Prayer, fumble with my iPhone gizmos and breathe. Boooooooo.
My blood counts resembled last week's and are improved over what Dr. H's office drew 5 weeks ago. "You look good!" exuded Dr. H, who looked tired. "When shall I see you again?" I asked. "Six weeks is fine. If you get the flu and a high temperature, though, call me. I'll want to monitor you to make sure it doesn't turn into something worse." With a weak smile and a slight solar plexus thud, I said okee-dokes and skediddled out of there.
I still get triggered in a hospital setting. I came back to the house, had a bite, then went out and spent a half hour at the gym. Lord Jesus Christ, Son of God, Have Mercy on me and my endorphins which I wish I had more of not to mention some neutrophils....... please.
The awareness of "no guarantees" continues. There's a young lad named Jaymun who's not doing so well. If you'd say a prayer for him and his family, I would say Thank you for that. For my friend Steve also.....!
I focus on the One Guarantee I believe in.
Here is one of my favorite quotes from Hildegard von Bingen: "Even in a world that's being shipwrecked, remain brave and strong."
Thursday, September 24, 2009
I chose an out of the way midway point for my journey back to the northern Atlanta suburban sprawl.... tiny Cashiers, NC. A long ways from pokey Wilkesboro.... 182 miles in fact, the last dozen or so on twisty turny mountain roads reminding me in waves of California Highway 1, parts of rural Scotland and then again some of the Pacific Northwest. I arrived tired and grumpy and slept a long while.... awakening less to my mental grindings than delight at hearing the birds serenade me.
I'm not so sure that "the jury is out" for me in the experience of IV nutrition than that they've cast their votes and are headed out in search of a real mug of strong coffee. Today I'm not sure that the IV portion of our show will continue as part of my rebuilding plans. I don't like pain or needles; I'm traumatized by needles and I've been told by more than one hospital nurse that my veins are growing scarred. The first attempt doesn't always get it and I cry. So... I can pop vitamins down my throat with the best of 'em. Since this is my only resistance, I won't judge myself too harshly. But I did it, by gum..... I lived through two IV experiences, the heavy metals test AND a plastic bag full of good things for me (Vitamin C, minerals, you know - Good Things).
I'll return to the Clinic in a few weeks for an in-person consultation and another delicious massage with healer man Dennis. Were I true road warrior (and boy, it's times like this I miss flying!), I could wrangle the 12-13 hours of highway driving and my 3-hour appt. at the Clinic. I'm not. I'll stay overnight and possibly treat myself to another mountain exploration. I can do this. I can do this and thank GOD for this. After two 25-day stints in a leukemia ward, oh yes I can do this.
In the meantime, I'll wander through little Cashiers, listen to the birds call out to me, and grab a strong cuppa joe for the four hours back to citified land. And there's choir practice tonight. My holy carrot and one of my deeper joys.
I wanna mountain cabin!
Tuesday, September 22, 2009
I have some marvelous photos from last Sunday in Church, taken from the choir loft. Unfortunately they have little to do with my stay here in Wilkesboro NC while I allow the holistic clinicians to have their way with me! You'd think I'd have an easier time finding my one thematic photo for each post....
My overall sense today is that I feel I'm working with good people. Not just nice, but capable, conscious, caring.... and professional. Come to think of it, many of those I encountered in conventional oncology land were of a similar ilk, with the teensy tiny exception that I grew to encounter a shuddering resistance to their methods of dealing with cancer.
I am moving away from the fearsome enormity of conceptualizing the leukemia as central to my life (or death) to looking at how I may live, period. How all of me may live.... not just this ragged and sometimes melodramatic issue. As the pastor of my Church and I agreed in a short one-on-one visit, I don't want to be known as leukemia girl. And I'm not, dammit - the thing's in remission today, thanks be to God!
Today was Day 2 at the Clinic. I won't unpack every nuance, but it anchored in more of my sense that I'm working with a good crew. First order of the day was to live through having an IV drip of DMPS (with a glycine shooter preceding it), its purpose being heavy metal chelation - e.g. loosening up to ultimately get rid of. The next bit was the most heavenly - a long, dreamy hour-plus of a lymph drainage massage. Oh bliss. And the massage therapist was a lovely, God-emanating being..... wow. Normally I eschew massages as an expensive quick fix leaving me mostly spacey and covered with lotions, but today's was a treat. Afterwards was a detoxification procedure that involved coffee. Honey, that's all I'll say for that one for now! It had been perhaps 20 years since I done did one o' those.....
I then met with both docs sequentially and reviewed the lab results from yesterday's oww-oww blood draw. With the first we discussed hormonal levels and how they might affect immune system compromise. With the 2nd, I was in tears of gratitude at some of the numbers, which ROCKED! My WBC is 1.5, up from last month's 1.2; reds maintaining their low but near-normal numbers, and my platelets.... 97. Almost 100. I can't remember the last time. One month ago they were 58 or so.
Interestingly, he went through all of the other bits, which showed remarkably resilient strength for someone having been battered with chemo. I was swooning with gratitude as he pointed out the list of Good Things, from glucose to uric acid to protein levels (busting the mold that every cancer patient must be on a pure vegetarian diet) to liver and kidney strength! My cholesterol rocks ("You can tell you're a runner," he said). The weak spots, from calcium to B12 to iron levels, we'll attend to with quality supplements. And the coming few weeks will return test results for heavy metal toxicity. Even my cortisol levels are strong! That's a stress hormone, and its strength is indicative that I'm not withering under the strain of "doing battle." Which is of course a powerful part of my stepping into healing.
Tomorrow I'll sit through a 3+ hour IV nutrition blast. This will be the 1st time that I've been next to an IV pole holding something utterly good for me. I'm still needle- and pain-phobic, but the sitting room is social and educational. I will come with snacks and maybe even a latté to see if I piss anyone off. I mean, someone's got to keep the Purity Police on their toes......
Monday, September 21, 2009
I'm struggling to share some morsels about my first day here meeting the folks at the Clinic and getting quite a thorough series of tests.... while the metro Atlanta area is being deluged with horrific floods!
I hope this passes through as quickly as possible.... for those losing power and even some of their homes.
Ironically or not, my 300+ mile drive to the north was pretty uneventful. It was pouring buckets as I left and yet I found myself entering low cloud and mist rather than more torrents.
I'm a bit space-brained from travel and the bustling newness of engaging with this multidisciplinary group of healing folk. While the other clinic used only 'the boop machine' as a diagnostic tool, we've got a more fleshed out gamut here - blood, urine, vital signs, a long talk with the head guy, Dr. Cohn, and something rather intriguing called Live Cell Analysis. Perhaps I can more readily validate watching my blood cells bump-and-grind from a finger prick droplet under a microscope and projected onto a computer screen..... than hearing funny synth sounds from the other method. Of course cells gone awry are my deal - faltering bone marrow spluttering out crippled cells and platelets. I'm still pondering this one, and a first blaze through an online search shows at least as many sites proclaiming this hokum as singing its praises.
Something went horribly wrong at sometime for my marrow to stop functioning properly and develop into AML.... with its still-around precursor MDS. Conventional medicine has told me that they don't know WHY I developed leukemia. They also told me that my best chance of survival consists of a bone marrow transplant (45% to the 5-year mark not addressing quality of life). The CAM and alt folk require just as much discernment on my part, however I'm getting more answers and possibilities from them. And let's face it - since I've added quite an arsenal of herbs since returning Stateside in mid-July, I AM feeling noticeably better.
I'm still discerning. Tomorrow I'll spend 5-6 hours at the Clinic; Wednesday another three. I'll share more as I am able.
Friday, September 18, 2009
Sunday after Church I scoot onto the highway and make my way 300 miles to the north - to stay at a nearby mid-range hotel and meet with the folks at the Holistic Medical Clinic of the Carolinas in Wilkesboro NC. I must be getting better! I'm twitching with a happy smirk to be going on a little road trip for a few days!
The field of sunflowers is from a really goofy roadside not-quite-attraction called Uncle Shuck's Corn Maze, about 40 minutes north of Roswell. I think being aged 2-5 was a prerequisite for getting the most out of it. I passed on paying $9.00 to walk through the maze and made my way back to the land of all that is here for me, which considering What Happened nearly a year ago, is growing considerably! And so I pray that these discerning steps for a healing team aren't a maze of confusion.
I have met with the first group, Covenant Health Clinic right here in this town. I didn't have the most gracious attitude coming into it since attempting to liaise constructively with the support staff found me growing grouchier by the day. The short answer is that my bullshit meter was triggered to not a small extent by my 1st hour there with two technicians running this machine that was purported to measure my life force energies along acupuncture meridians. Attempts to have it described left me probably failing at graciousness and instead crumbling into a palpably challenged belief system. With NO flyers in the front office's rack nor any information on their website, I was finally able to learn that this thing is called Bioenergetic Testing, created by a German fellow named Reinhold Voll in the 1940's. Hooked up to a laptop and making full-on 1960's piss poor synth sounds as the metal probe kept applying pressure to my middle finger (go figure!), I thought the thoughts of she who has swallowed more snake oil potions than any semi-sane human has a right to have done.
This isn't to say that what they were doing was remotely invalid or unhelpful. I'm stumbling around in here while 'fessing up that in the past 30 years, I have been to authentic healers as well as have fallen prey to the most gussied up 'new age bullshit' on the planet, often priced in the thousands of dollars. I have embarked on today's path of holism with prayer and deliberation. I endeavor to be a wise discerner. "Easily triggered" however is also a part of my arsenal of goods....
It's no surprise to have been told that I was extremely weak in my liver, kidneys and lymph systems. They also try and ferret out emotional traumas, with the CSA device acting as a sort of electronic kinesiology meter. "What happened in 1980?" I was asked. Hell, I hadn't even gotten sober then. I looked calmly at the gent and responded, "I don't remember. Probably blocking it." I have also paid substantial sums of dosh to uncover the traumas of my life. Therapy? Hah! Child's play! We're talking.... well, I've been there and done that, often repeatedly. What works for me TODAY is my Christian path and my 12-Step programs..... breathing in and breathing out.
Granted, asking me this when I was hooked up to a 3-pump IV would've generated another response. Today the scars remain on my arms from both PICC lines. Today I feel guided to seek a manner of healing that addresses all of me without pouring poison into my veins.
Mary Travers - Rest in Peace, my songbird unmet friend. Her bone marrow transplant gave her I believe 2-3 years before the side effects finally overran her life force.
Later meeting the head of Covenant, Dr. Rhett Bergeron, was a delight. As guarded as I was with the booping machine techs, I warmed to Dr. B's easy manner. He understood that I would meet with the North Carolina folks this week, and the half page of products recommended to me could wait. I felt he was a balanced combination of kind, professional, humorous, and far-sighted. "Call us when you get back!" he said with no edge. He too reiterated that their protocol attempts to address their understanding of the cause of disease rather than treating symptoms. There was no blood draw that day. Their focus is on "How did this come about in your life? And then.... how can we help you be restored to a whole state where the cancer CANNOT live?"
I spent 2+ hours with three different people there and paid $481.00. They don't bill insurance. They're considered out of network providers, if that. The healing I seek isn't on the radar of most insurance policies. And as of January 1st, the one I've had for several years evaporates. The short teaser is that my Blue Shield of California policy went from $356/month to $733/month (post-leukemia). You'd think I'd get some pat on the head to just transfer to another "Blues" provider here in Georgia?
Try $1,400/month, which I cannot and will not pay.
But back to life..... I have one today. I have a damn GOOD one today! Even when I'm a brat and eat too much sugar, or my friend the brain spins around and wreaks havoc yet again with my peace of mind and heart... I have a life and I pray to the God of my understanding that it may be luscious as long as it may be.
How 'bout an amen to that? I thought so!
Tuesday, September 15, 2009
I tried to Google a story on Patrick Swayze a week or so ago. What was up with this man so valiantly fighting pancreatic cancer? If you're reading this you probably know that he has died. May he rest in peace. And may my furrowed brow think less such thoughts as "Am I next?" than "My faith is in the One Who holds me through life and death."
Never lose hope, regardless. I remain baffled that in 2009, fiery spirits succumb to various cancers after taking the best that conventional medicine has to offer. The rare survivors, many following alternative protocols, seem absent from the media. I scrounge for their stories and I pray for courage no matter what.
This week I'll visit with two clinics, one a day's road trip away to Wilkesboro, North Carolina. I go in and out of anonymizing those with whom I interact, but I was touched by what their lead physician wrote to me.... perhaps made more poignant by my sadness after Swayze's death following his 2-year battle with pancreatic cancer:
"As I explained - we never make decisions on care until we have seen the patient, reviewed the entire file and see if the doctor/patient match is good for both. We cannot help everyone but we try to come up with solutions - even if it means seeing someone else who can benefit our patient better. Doctors are teachers - not healers - so the goal must be to help you learn what is available and then you must choose."
This is a voice of wisdom that I pray is also connected to protocols of health-building and hope. Not one of the oncologists exhorting me to get a bone marrow transplant ever spoke to me in gracious tones such as this! Again, I have not ruled it out. I'm simply not led to such a gruesome procedure today.
I tend to become more introverted and frightened in the lead up to any medical procedure. It's easier to have balanced days when I am simply doing so, breathing so, living them. Ah but when the lens zooms in, I creak and hold my breath. I don't know what I'll discover over this coming week and more. I pray I encounter it fully held by the Lord's Grace.
Saturday, September 12, 2009
Having a few control issues remaining in my life, I prefer my confusion of the roadside attraction variety as opposed to that which carries the threat of, "OH NOOOOOO! What if I MESS UP!?" This photo is from a 2005 road trip I took through Northern California, not aware at the time that one of my later-found high school buddies was living not far from my motoring explorations.
Who needs a sore butt as an excuse to stop at a place like this?
I'm not sure I can extricate an analogy out of this without more organic coffee this morning, but my visual is based on my next steps in healing which involve others: Over the coming 2 weeks, I will meet with and be tested at two holistic medical clinics. One is here in Roswell, GA: Covenant Health Clinic, run by a well-recommended Dr. Rhett Bergeron. The other involves a road trip, something that when healthy never fails to stir up little bubbles of excitement in me: The Holistic Medical Clinic of the Carolinas, a leisurely 6-7 hour drive to Wilkesboro, NC - including a 3-day stay in the local area. I will spend several hours at Covenant this coming Thursday the 17th. I leave this Sunday the 20th after Church for my drive to the north.
Emails and phone calls needed to be followed up with in-person visits. There is only so much I can validate at arm's length. Both seem like excellent teams of healers. And while I have written in here that I am feeling better than I have in a very long time (save for this week's unfortunate pulled rib ligament or muscle which has put a real crimp in my exercise and life force levels), I don't need to brag about my mental health to declare that my healing path is not to exist in a vacuum consisting only of what I think are great ideas.
When I made the first appointment, I felt not relief but worry. I then realized that, for the most part, I don't trust physicians. I have pendulum swung over the years from Fix Me, Only You Have My Answers! to "stand back and let me think about this.... for a very long time." It was in listening to my inner wisdom that I began my more intuitive healing journey in February of this year.... when I first said, "Wait wait - no!" to a proposed 3rd hospitalized round of chemotherapy. It was only then that I began to read up on alternative protocols.... which I continue to do as well as act upon. And I desire to do this with the help of folks much wiser and more experienced than me.
Especially the One Who heals me and holds me most of all.
Will I attune to one, both or neither? We'll see.
Sunday, September 6, 2009
This is my friend Tony Brown from Scotland, peering forth from a potful of potatoes that he showed me how to plant back in April (or was it May?). Potatoes grow upside down! You put a few little tatties into a pot and cover them with soil. Voila! Green shoots spring up. Cover 'em with more dirt. Watch like a hawk and keep watered. Repeat. And then..... and then.... and then.... you can harvest them.
Just below is the midway point in potted tattie land. I grew up in Venice Beach, California and learned nothing about gardening. What grew locally were succulents, daisies, a few others whose names I don't recall. Sand and salt spray were not conducive to the kind of lush gardens and gardeners you'll find abounding in Great Britain. So Tony teaching me how to plant tatties was a treat.
The top photo just arrived in my email box. I love it. I'm sad I left before I could taste them. They wish I was there to taste them, also!
When I arrived in Scotland in early April, I had hoped for six months and frankly more. I didn't know if I would live or die, to be brutally honest. I was fairly weak, with no stamina to speak of. My treasured 2-hour walks with Ruthie would find me in bed for the same amount of time the next day. And if you've followed my path in these blogs, you'll know that it became time for me to return here to the States. I had 3-1/2 healing months with my precious friends over There.
I began like the early pots and am feeling more like the top photo, save for Tony peering through the lush growth. I am stronger and healthier than I have been in well over a year. Not yet here in north Georgia two months, I am allowing a life to come into me and through me.... noticing I am loathe to splutter forth A List of all that I'm doing since that was one of the character defects that surely didn't help my poor immune system get into the mess it got into - the gogoGO and dodoDO revving that ran me into the ground. (I am not saying that I 'gave myself leukemia'; I am acknowledging that stress can cause all manner of unwellness).
Today I am experiencing the riches of having a life. I'm even tempting my old modus operandi of too much.... remembering to breathe slowly and STOP. Whoa, girl, what's this frenzy? Stop. Breathe. Look at the riches you have!
The potatoes grew and were harvested. They had a beginning, a middle and an end. I too will have the same. One of my aha's today is that an end which threatened to be very close at hand doesn't feel quite so lurking.
Prayer? Herbs? Scooting right up to this "I am the end of your life!" bugaboo called Death and saying, "Okay. So you're close. Hi." The sheer unadulterated Grace of God?
It ain't dumb luck. I don't believe in that. I also don't have all the answers, or believe that life is black-and-white. "If I'm Good, I'll live, and if I'm bad, then it's curtains." For some reason, I am not only still alive but more vibrant than I have been at least since this nasty thing called AML came a-knockin' (me over) just about a year ago. It was last October. And what a ride it has been....
I prefer the one I'm having now. There are no medical guarantees to be had, not with this thing that I have. But my Assurance doesn't reside there.
In the meantime, I'm doing well. Very well.
The tatties grew. They were savored oven baked with butter. I hope to plant some more next summer in my friends' garden at Fisherman's Bothies.
Until then.... I will do my best to embrace each day as God's Gift to me, that I may share more with others as well!