Friday, August 26, 2011

he doesn't know he can't do that


I have been given permission by my cherished friend "Matchy" in Scotland to quote from one of the handfuls of beautiful cards he has sent me for weeks now and written in a nearly medieval calligraphic script. Matchy has no computer or email. "I have my fountain pen!" he blurts with glee. He is a gifted gardener, a Scottish Episcopal Church Deacon, a former Franciscan Brother. I shall quote my friend here:

"Dear Diane:

Greetings. Here's a Bumble Bee who, according to aero dynamics should not be able to fly. Think our Creator has other ideals.

I just love to see them visiting fox gloves and getting stuck in the flower. They waggle their bums, buzz with fury as they back out then go humming on to other flowers. They're part of the wildlife orchestra which serenade one in the garden. Especially soothing sound as we work our way through the weeds.

Drove to Grantown yesterday and saw the soft purple haze of the heather on the moors. Just such a wonderful sight. Spent a while beside Lochindorb especially gentle waves made me think of the Sea of Galilee. There's so much to be thankful about.

You continue in my thoughts and prayers.

Much love,

Matchy."

My friend has his own health challenges and yet sends love, prayers and three-dimensional cards... the kind you have to buy, find stamps for, take to the Post Office. (Royal Mail in Great Britain). There's something to be said for not having "a magic machine" as he whimsically calls it. There's something to be said for reaching out beyond one's own sources of abundance. The Abundance of the Risen Lord and the impossibility of the bumble bee.

I have had a markedly eventful week on multiple levels. Monday's medical appt. at UCSF turned into one of those science experiments where you mix things that bubble up and boil over. Hey! What's this mess!? Oh it's not a mess it's.... something else. (No it's not. It's a mess). When I finally asked for copies of the bloodwork, something I had stopped doing when all this got into another realm, I got pushed up against one of my old walls. "Platelets from Aug. 10th were 66; that morning they were 33. Oh shit. I don't like this." So I paced the tiny office waiting for Dr. Olin, repeating both The Jesus Prayer and Hail Mary's. I LOVE the Blessed Theotokos, the Mother of God!" I paced and prayed. The nurse practitioner Bethany came in 15 minutes later. "I apologize," she sighed. We mixed up your labs. Here are yours..."

Platelets 85. Robust. Good. My friend the brain had its time with me even while I prayed and paced. Screw the numbers!

"You do need a blood transfusion," she added matter-of-factly. Your Hematocrit is low." I paused. My ride that morning was waiting and this was a 4-hour affair. "May I come back in a day or so?" I asked. "It would make it less complicated."

"Of course," said Bethany. We made the appt. for Wednesday.

I have had dozens of blood and platelet transfusions over the past three years. They're not that hard. Granted, most have been while I've been INpatient, hooked up in my hospital bed, ready for another needle. This one in the Infusion Clinic was the worst experience of my life. It hurt. All. The. Time. I was freezing in the room. Even the warmed blankets brought by the nurses only eased the angst for 15 minutes at a time. Before the 2nd unit was even one-quarter done, I said, "I can't take another minute. Unhook me please. I am calling my 5pm ride and going home now." They totally got it. Precious Maria picked me up in front of the 400 Parnassus building and scurried me away.

On Tuesday I had thought, "I want to see my new biological dentist now.... the one I interviewed seven other dentists to find and feel so darn right about". All the work of researching (pre-C-bomb) attending to years of oral unwellness had of course been set aside. The wretchedness wreaked by the oral steroids left my mouth feeling so ecch that I had the simple, soft thought, "Ok. Maybe not the Whole Hollywood Pepsodent Smile plan I've waited years to implement, but... SOMETHING."

On Thursday I spent two hours in the dentist chair having not one but TWO broken and decayed rear crowns removed. Dr. Larry and I had already done numerous prep earlier in the year. This was the work. Nitrous flowing, a tiny iPod playing bird sounds or Classical music... and I was teary-eyed in gratitude. I knew that poison was being removed from my mouth. Was it arduous? Of course! Did I stagger over to the frozen yogurt shop in Mill Valley afterwards for my there-there-now reward? Yeah!

Am I being led somewhere with this? Maybe. I brush aside the negativity that hisses, "So why do you even bother to have this done?" I nod at another thought that said, "Hey! Fix! Heal! Cure!" Hello, expectation. Today I breathe and pray and take another healing step.

I see Dr. Larry again on Monday.

Coming up .... a CT scan on Friday, Sept. 2nd (so what ARE these steroids doing??)... working with my now-renewed health club to enter their therapeutic hydrotherapy program (they need an Rx from an MD, fancy that)... and amazing visits with beloveds coming up in the next few WEEKS! Not only Tony, Ali & Ruthie from Scotland.... but my high school chum Cynthia this coming Wednesday to Friday. We haven't seen one another in 20 years as she and her family live in Guatemala. I'm clearing the decks and keeping my dance cards close to the Lord and my heart, one day at a time.

I sip my late afternoon Earl Gray tea. I thank God for another breath, another day.



Tuesday, August 16, 2011

how it goes today


I have been home over 2 weeks from those rollicking, tempestuous and healing 10 days at UCSF Medical Center.

I am breathing God's natural air with my one favorably functional left lung. I take no supplemental oxygen, to which I had been home- and car-tethered in the weeks prior to the July 25th ambulance ride over the Golden Gate Bridge. In ICU at one point I was on 20 liters/minute. They weaned me to two and today I have none but God's!

Over three weeks of severe lower leg edema, attended to in ICU with a massaging compression device I dubbed the "Vibrating Storm Trooper GoGo Boots," has completely healed. My Sunday Night Oikos Group were all over me for that one! Sausage legs found her skinny ankles again. I'm walkin'!

I am slowly learning how to sleep through the night again, often with a little 2am nudge of 10mg. Oxycodone. It helps. I am letting God show me how to artfully rest and not have a personal agenda about what's "good" for me. I'm praying my way through this.

I am taking strong oral steroids in the morning: Dexamethasone. I agreed to this in the hospital as a prayerful investigative protocol. Basically they hijack my mornings with heart palpitations and disorientation. They are purportedly shrinking the tumors. I pray over them and hang on tight. By Noonish I start to feel slightly normal again.

I indulge. One of the hooks (hospitals can sure shrink a gal's consciousness) in being moved from UCSF ICU to "11Long" was being told, "You'll get ice cream". I have been health nut girl for most of my adult life. I got home and didn't tiptoe through the Whole Foods frozen section for organic agave-sweetened num nums. I went straight for the Dryers from the local drug store. Bring on that wheat and dairy! I flopped into a gooey bog of yaaaa sensory gratification. "You can't eat sugar! It feeds cancer cells!" Well. Eff that. Lately easing up because my body is starting to nudge in a more wholesome direction, I loved caving in.... Oh, and don't get me going on DAIRY after 2-1/2 years. Sorry, China Study and casein implications.... Yogurt, cultured cottage cheese, Manchego, Feta salad dressings.... hmmmmmmmm!

An afternoon nap is a glorious God gift.

I continue in clarity about boundaries and unfettered communications. Many beloveds continue to view me as what I call the pre-hospital Diane.... oxygen-deprived, unable to climb stairs, gasping going into the next room. I was given glorious assistance and needed it. Post-UCSF Diane welcomes friends with whom to do things, not so much to do things for me. It's a pretty significant difference. I praise GOD for this! Simply being able to take real showers for the 1st time in five weeks is heavenly.

I'll have my 2nd follow-up appointment this coming Monday back at UCSF, driven in by a friend from St. Paul's. The visiting nurses and other medical personnel from "Sutter VNA and Hospice" come by periodically, as well. I am one of their low-maintenance peeps. I love this.

I give thanks to the LORD. Thank You, o Holy One.

Jesus Lives



He lives and reigns and calls!

Top to bottom, that's Ruthie Whitfield with Alison Sheriffs-Brown; the photo below is of Ali and her husband Tony Brown. Most of you reading this know that these are three of my best friends in the entire world who live in the Scottish Highlands. For 20 years I've come and gone, tried to emigrate, lived for bits of time. Their arms have always been open, their hearts, their kitchens. The kettle is always on.

They are flying out in early September to spend a week with me here in northern Marin County. It will be Tony & Ali's first trip to America and Ruthie's 2nd, which featured (sic) a night at a "Y" in the Tenderloin in 1990. "You are NOT staying in the Tenderloin this time," I said.

This journey dream prayer began while I was at UCSF, from emails and mobile phone calls and "this is what's UP with my life now, beloveds..." to "I want to see you again." As Tony said to me on the phone just yesterday, it is all coming together with grace. And after they'd bought their tickets at the local "Beaver Travel" agency in Forres, Ali spied Jesus. "Look!" she whooped. It's the Lord's deep Pockets bringing us all together.

As my sweet Novato red house does not boast a guest suite, I discovered that for the very same price as a rack rate Best Western right off the Hwy. 101 corridor, there were lusciously compelling Vacation Rentals!

Here is where my beloved friends will stay in early September. What do you think? A boxy hotel room or a Moroccan-themed villa right on the lagoon with a hot tub and gourmet kitchen?

As well I've eyed three restaurants so far to which I MUST take us: (1) Boca (Argentinian) here in southern Novato, (2) Harmony Restaurant in Mill Valley, (3) and Bubba's Diner in San Anselmo.

Here are a few photos from over the years. {LINK-o-mat!}

Praise God from Whom All Blessings Flow!

Sunday, August 7, 2011

where Light blooms



I shall Recap: After several years of vague quirky health symptoms and slowly sinking blood counts, roughly between 2003-2007, I was diagnosed with MDS (myelodysplastic syndrome) in November 2007 following my 1st bone marrow biopsy. Almost a year later I landed in the leukemia ward in the Alta Bates Hospital system here in California with an AML diagnosis: Acute Myeloid Leukemia. Nasty-assed one that is. Two harrowing rounds of IV-chemo in 25-day stints, $500K billed to insurance, and salivating oncologists eager to line me up for more more more. At that time, following an uneasy feeling inside of me, I stepped away from conventional cytotoxic cancer care (sic). The blast count had been shot down. I was "in remission". I took that, my faith in Christ Jesus and His Will for my life and a growing commitment to alternative healing protocols for the following 2-1/2 years. I decided against a bone marrow transplant. I wanted quality of life, not a scary tango with graft-versus-host-disease. I wanted GOD's cure, not Big Pharma's cure.

I had for the most part a fantastic 2 years. Yes, the counts slagged along the ground, but as far as I could tell, I was challenged by the chronic MDS and not a relapse of the AML. Carrot juices, green power smoothies, beaucoup dollars worth of custom-chosen supplements each day, week and month, eating with relative purity, praying my heart out, exercising.... living. Living! The beginning of 2011 introduced more see-sawing in my healing path.... some things were not tracking properly. I was beginning to struggle more.

After leaving for a healing road trip in early June, feeling fantastic after 8 days with the Mt. Rainier Clinic up in Gig Harbor, WA, I ambled my way back to California via the Mt. Angel Abbey in Oregon's Willamette Valley.

On June 20th, I lost the ability to take a proper breath.

It has been Mr. Toad's Wild Ride ever since then... and the adventure continues.

I will cut to the chase. Today I have not one but two cancers: A return of the AML in my marrow, and a new T-cell lymphoma (a rare Non-Hodgkins). There is a tumor behind my breastbone that is malignant and has turned my abilities to breathe inside out. The suddenness with which this came on still baffles me. As I have written, I had spent a shrinking 5-6 weeks with piss-poor pseudo-medical care scattered throughout the local environs until Sunday, July 24th when I landed on the floor of my living room crying out to God and phoning dear friends from my Sunday night Home Church group. I got them out of bed at 6:30am. The local Novato Community Hospital took me in, ruffled my feathers and then said, "You are not dying on our clock. What you have is serious. No one in Marin County can help you. We're transporting you to UCSF Medical Center NOW."

I believe that this intervention and God's Holy Grace have saved my life.

I was in an ICU bed with wires attached to both sides of me. I could not rise without nursing assistance. Teams of physicians trooped the halls... the ICU team, the Cardiology team, the oncology team with their ever-present black clouds around them. Each focused on the varying parts of me, with the cancer chasers at the core. When the oncology team shuffled into my ICU room and splurted out my dire straights, they said, "We can begin chemo tonight. We can put you back into Induction Chemotherapy for the AML, which will not cure you but buy you some time. We can treat the lymphoma differently and concurrently. What is your choice? It's this or hospice."

I stared at the doom bringers. "Lord....?" I thought and prayed.

"I'll tell you tomorrow," I replied very softly. "I'm not making that manner of decision just like THIS!"

And I already knew.

NO. I do not want your "treatment". I will go home to palliative home hospice care when I am able enough to leave the hospital. I will not attempt to buy time from you. God has my life in His hands. He will bring me Home to Him when He chooses. Not you.

And that is where I am today.

I'm not quoting numbers. I have 3-4" of papers and charts and labs. I've not looked through them. I am not concerned with that. I am operating on one lung, which I am told is done ably by many. The right loculated pokey is simply non-functional at this point. I have had fluid removed from around my heart (!) - a "pericardial effusion" manifested that was operated on - and also from around the lung area. At one point in the hospital I had three drainage tubes hooked up to me, one heart and two lung. I have NONE today. At one point in the hospital, after weeks at home on 24/7 oxygen (5-6 liters/minute), I was on 20 liters/minute. Weaned down to 2, I haven't had supplemental oxygen in well over a week PRAISE be to GOD! I walk slowly. And I walk. I take oral steroids every morning, a protocol I felt a 70% willingness to do. They're supposed to help shrink the tumors plural (alas). There are side effects. After over 2 months of sleep deprivation, I am learning how to sleep again. In peace. When I awaken in the night, I pray and sometimes simply give praise and thanks to God.

I am surrounded by love and support of friends. My first few days back in my own home became a whirlwind of utter JOY! Meals out, laughter, fellowship, breaking bread with my beloveds in Christ Jesus. Spontaneity. Yes!

There is much I wish to uncover, share and explore in this space from my heart. Taking in your love, your thoughts, your candles, your prayers. Opinions will fly. That is life. I am not sitting in my prosaic rural Novato home waitin' da die. I'm not flinging an ego-sword of outrage, proclaiming, "I'll show YOU!" I don't have a road map. I have the Lord God Whom I love and Who has never abandoned me for a half-breath. I am curious. I am sometimes afraid.

I am surrounded by the Love of God and of the brethren. I pray and drink tea. And I can't wait for my next blog post.... for an exciting gift that is "planned" (ah, the catch-word!) for early September. DELIGHT. Tee hee! Wait and see.... breathe and laugh!

I am alive today. I will be alive after my earthly body says farewell. I will be as present with you all, my friends, as I am able.

Wednesday, August 3, 2011

gimme sugar and that sweet love of God


Here's my num-num place holder with sweetness visions dancing from years ago as I bounced around Scotland on one of my many succulent journeys there. I'm home from 10 days in the hospital into which I was ambulanced on Sunday, July 24th with five gasping words to each 1/8th breath I'd become used to over the prior slowly shrinking 6 weeks. I spent 6 days in the ICU ward at UCSF Medical Center before being transferred to "11Long" - the cancer ward. If you're sick, go to UCSF. Marin County could not help me any more and in fact their brightest and best seemed to be colluding to scrinch my symptomology into bite-sized neo-fixes which were not helping me in any meaningful manner.

If you can't breathe, you can't move. You can't think. Cognitive function slowly erodes. Your best thinking and praying aren't clear and in fact are muddying themselves a la putting the little froggie in the cold water pot and slowly turning up the heat. If you do it gradually enough, rumor has it that it will cook to death before it realizes it. No drawn butter for me today, by the grace of God, thank You!

I am home. Jim and Jane brought me here via pill bottle pickup at the local ├╝ber-organic Pharmaca and a salad 'n soup Whole Foods run. I sip a soda. I moved the breathing machines (all 4 of 'em) to the sun porch. I will sink into quiet, into ahhh, and share as I am able over the coming whatever bits of time. My fingers dance a happy beat all 10 fingers, lost to me in hospital land with my otherwise extremely able iPhone4 (get one!). Tonight my Sunday night Oikos Beloveds and I break Naan bread at a local Indian restaurant here in Novato. Pile the table high, give thanks, and give thanks again.

Thank You Lord that I am home. Thank You Lord for showing me Home. I crave Your strength today. In Jesus' Holy and Most Blessed Name, Amen.