Saturday, July 23, 2011

Our Lady of Perpetual Help

I was given this icon as a cloisonné-like medallion by Bette Campbell, a long-time friend and the mother of Susan, one of my high school chums. She's been back in my life since health challenges got a bit too vocal 2-1/2 years ago. I wear it almost every day, sometimes with and sometimes without an Ethiopian or pounded pewter cross. I've had numerous people stop me and comment. It seems to be a beacon. SHE seems to be a beacon! I once asked Bette where she got it. She beamed and said, "I don't recall!" Perhaps a Catholic gift shop on a tour of California missions?

Ok - out of the way right now - I do NOT have the biopsy results from July 15th! My oncologist's office does not, either. Evidently the slides have been scurried off to UCSF Medical Center where they're doing whatever they do to come up with a result we can work with. I'll never hold back on y'all! Once I know, I'll post it.

Thursday at 8:45am, dear Brigitte from St. Paul's and my choir came by to take me to Novato Hospital for my scheduled Thoracentesis... I believe my 4th since June 22nd. The 24/7 drainage tube for the loculated right side does a paltry but consistant job of getting out what it can. But imagine your lungs in one of those 1940's B-horror movies, where the walls close in from some wretched dungeon you've fallen into. After each "tap", whatever the amount of fluid removed, it begins to seep back in again. Even with plastic tubing up my nose and this wretched but necessary O2 machine giving me now 4 liters/minute, I haven't had a proper breath since the morning of June 20th. So the "tap" (Thoracentesis) is an ongoing need until the nightmare of the pleural effusion is completely healed (PLEASE GOD). And nine days prior, Novato Radiology had flat-out refused to try. Too many pockets in the loculations (think bubble wrap). I left in tears.

I was desperate on Thursday. And praying. I'd not met Dr. Chinn before but his eyes beamed warmth. Bent over my familar table and pillow, they started up the ultrasound images. Same old same old. They shook their heads and clucked, "I'm sorry... we're sorry... we can't do anything here." I tried not to weep. I looked up. "Please. Is there ANYTHING you can do to help me breathe?" Dr. Chinn then looked at my LEFT lung, which weeks before had been clear. It was not. "We have some fluid here," he said, "and I'll try to see how much I can get out. Are you okay with that?" I'd have been okay if he'd hung me by my toes and danced around the room to give me some more breath.

He also noticed my medallion. "I see you have Our Lady," he said softly. "Yes," I said. "She helps me. She really does."

He got out nearly one-third of a liter of fluid around my left lung. "You're breathing better already!" chirped one of the assistant nurses. I could feel it - a shift, an ease of a little more freedom. "Thank you," I said grasping his hand.

He then walked around to my front and said, "May I pray with you?" I was stunned, elated. "Yes PLEASE!" And this wonderful doctor in a hospital room prayed with me, asking for healing in the name of the Father and of the Son and of the Holy Spirit. I was crying softly. What kind of miracle of God is THAT? A praying doctor!

I have a standing order for more of these. I phoned today. I see him again this Tuesday. You bet I asked for him by name!

The nurses gave me new information: "You've lost a lot of electrolytes today. Please pick up some Gatorade or Pedialyte, and rest." "I'm always resting!" I said. Still, I asked for a wheelchair to get me out and back to dear Brigitte's car. I was very happy and very weak.

I am on my knees grateful for my helper angels, not all of whom I've acknowledged in here. Back at the house, Brigitte swept my front steps that I can now barely ascend, put a small load of washing out on my wooden dryer on the deck, refilled my hummingbird feeder for me. She'd run into the local drugstore for my electrolyte goo while I waited in the car. And she picked some of my blackberries which are beginning to ripen. I insisted she take the small container. "This is the LEAST I can do to say Thank you!"

Carol L. came by shortly thereafter, bringing some of her Esau's Pottage (lentil stew). Oh how I cherish the gifts of my friends' homemade food! We visited for an hour, until by 3pm my eyelids grew heavy and I went horizontal on the sofa. "I'll go now," said Carol. Ah, rest time, I thought.

I stayed there for the next 16 hours.

My feet and lower legs have become sausages. I have never seen them so bloated and bulbous. My now-two lymph drainage sessions will hopefully help. I lift and ice them as I am able. Exercise? Sometimes I gasp going into the next room. The gym I grew bored with I now yearn for. I stare at the hills and fantasize walking them again, vigorously.

I pray to Our Blessed Lady more now. I need a Good Mother. The Mother of God, who can intercede for me and all of us, is a new prayer companion and spiritual succor in my life. Jesus, sometimes now I'm talkin' to Your Mother! And you know what? You All hear me.

Help me please to hear You.

Wednesday, July 20, 2011

the day after

It was a marvelous day of goodness.... considering I limp, whine, gasp and frown. I have beloved friends!

Pat C. from St. Paul's has appointed herself as one of my more energetic errand angels. Retired yet fit enough to begin her days with 60 push-ups (!?) plus gardening, she has been over several times. She arrived yesterday at 11:30 am with flowers and homemade chocolate cookies. Praise God! Putting a load of laundry in downstairs in my basement - or cellar, as her Midwestern sensibility calls it - we then ambled out to my first appointment of a Lymph Drainage Massage in San Rafael. My friend Stacey had found the studio recently. When I saw the website and the lymph drainage service, I did not hesitate to phone. My lymphatic system is a nightmare and I need HELP!

Nirmal's (Neer-MAHL) studio is in an old Vic up two flights of stairs. It took at least 5 minutes with multiple heaving stops for me to ascend them, Pat holding onto my portable O2 canister. Nirmal and I weren't even sure if we could do anything, between the drainage tube in my back, O2 up the nose and my inability to lie flat on my back.

We were surprised and delighted to discover that we could. It felt lusciously, quietly healing. I will be back on Friday, with Pat at my front door!

I haven't driven in almost a week. I could, I think. I won't - just yet.

Then to Novato Hospital for a blood draw to make sure I have the right numbers for tomorrow's PLEASE GOD Thoracentesis. The phlebotomist was on it - one look at my veins and she could see they were a piece of work. She was a champ.

Last stop Whole Foods - this time me staying in the car while Pat grabbed a few items for me. My world slowly spirals smaller. Can I Welcome the small? Can I breathe into it, even though I ache for true breath as I'd known it? I struggle. Pat brought me home, put away my groceries, hung out my wet clothes onto my drying rack on the deck, and scooted off.

I collapsed on the couch for an hour and 20 minutes.

My birthday's not over! From numerous phone calls I wasn't able to answer, to the requisite 35 Birthday chirps on Facebook to emails galore, the LOVE poured in including a visit from my fellow alto choir mate Kari who brought her utterly delectable homemade hummus, raw veggies, corn chips and chocolate cake. We chatted and snarfed until there was an unexpected knock at the door - my choir director and his wife, Mike and Peggy! Ha ha; Kari had spilled the beans. We had a little party of four with candles, laughter and fun. Kari dashed up and down my basement stairs bringing the touched-up laundry from the dryer. A delivery arrived of flowers with balloons, from my precious friends Chris & Alice in Seattle (and Jane, Emma & Rosie, the four-leggeds). Balloons!

Love. I gasp and am loved.

The unexpected visit from Mike and Peggy touched me in a deeper manner: For the first time in years, I can be "dropped in on". Ain't that what LIFE is all about? None of this "let me check my Day Timer/iCal/whatever and we'll make some time...." I live that way normally. This is almost country life - just come on by, pull up a chair, you know how to make yourself at home.

I'm supposed to hear the results of the chest biopsy today. I've had many, many friend angels come over the past blur of weeks, visit, bring love, bring food, help me with things I grow weaker to do on my own. When will I hit bottom so I can rise again?

I'd like to start now.

Tuesday, July 19, 2011

Birthday girl

55 used to be a perky speed limit. Now it's considered rather slow.

I am slow lately. I shall write more soon. For now, savoring the love, the cards, the favors, the errands, the gifts and the prayers of beloveds.

And begging God for the grace of a healing.

Saturday, July 16, 2011


I think but do not recall if this is St. George slaying a dragon. It's from one of the many side chapels at Exeter Cathedral in Devonshire. I need that imagery right now - good vanquishing bad, all of those dualistic paradigms that spur flickers of hope in me.

By 9:30pm Thursday night it was fermez la bouche! No eatie, no drinkie. Food I can do without for awhile but I'm a water sipper so that part was hard. A night of neo-hell getting 2-hour blips of sleep on my sofa. Up by 6am and eager for my dear friend Carol L., in her Episcopalian priest's collar for good hospital oomph. She came earlier than 8am as I'd silently wished, God bless her.

The inability to take a proper breath even on supplemental oxygen as well as the absence of long, lush deep sleep are wearing on me. I cried. She counseled with gentle but clear wisdom, and then off we went to the jolly Novato Hospital.

Poke, prod, test, get on down, lay on bed-gurney, jealously eye Carol's commuter cup java. Nurses came and went. The 3rd attempt to get a needle in my arm succeeded while I cried and Carol let me squeeze her hands to bits. "My veins are heavily scarred and they roll," I told them clearly from the start. Wouldn't believe me, wouldja? They'd get fooled by a nice fat one and then... needle goes to the wall. Ah, but they poked me with a little lidocaine first and that did ease my oww-owww-owww. Finally I'm wired, still eyeing Carol's secret morning drink.

Dr. Koenker came in and explained the biopsy procedure. That's what I was there for. I don't often beg but now I was when I added, heaving, "Doctor, I can't breathe properly. Help me, please. If you could tap me and take some of this fluid out that they refused to do on Monday, please... I can't live like this." He listened compassionately and explained with no rancor that there really was nothing he could do. Carol stood up and advocated for me: "She can't breathe. Can't you help her?" He could not. I sank back into the bed. After he left my room, Carol added, "You know, he's honest and clear and that is a good thing."

Let go.

My blessed friend Julie L., who has just published her first (but not last!) book entitled "Disrupted: On Fighting Death & Keeping Faith," surprised me with her arrival. She brought a copy for me and signed it. We hugged and chatted, and then she left.

My sister Jean arrived soon after, who was to caretake me the remainder of the day. We weren't raised together and have a not insignificant age difference. Same mom. Yeah, THAT mom!

Off to the operating room. Gasping through two CT scans of abdomen and pelvis because I was lying almost flat on my back which I am virtually unable to do. The nurses and techs were lovely. One gal from Mississippi with that creamy butter Southern accent. Dr. Koenker close by. So either before or after the Versed & Fentynol began to drip in, he said, "You know, I think I'll try to take out a little bit of this fluid and adjust your drainage tube, as well. It won't be much but I'll do what I can." I don't remember if I cried but I grasped his arm; "Thank you SO MUCH." Sometimes when I surrender, goodness can find me.

Poke poke here, poke poke there. I wasn't fully out; there was little pain. And then it was over, me with a little bandage on my breastbone where we think by Wednesday we'll have some news as to the nature of that growth.

That morning pre-op phone calls were made to Metzger's assistant Gloria. When done, I had a prescription for oral morphine (told best at relaxing lungs themselves) and Atavan. I had her assurance that she would put in a standing order with Novato Hospital Radiology for me to call the day before and march my little heinie in there for a tap. I'm concerned that they have a tendency to refuse, but I will counter with a new tendency to insist. And phone numbers of lung specialists. A trail of possible solutions is beginning to take shape.

Jean was a champ. She drove me around, we quibbled in only a piddling manner (we are related, after all), I got dee drugs. I was so weak she had pushed me in a wheelchair both at the hospital and pharmacy - a first for me. By 7:30pm I was curled up on my sofa with a first hit of morphine. She watched me breathe as I dozed, deemed me safe, and left by 9pm. My 2nd morphine dose was at 1am. Early this morning I remembered; I needed anti-nausea meds when I got this !*#%! in the hospital! Let's just leave it at that. The bottle of foul-tasting liquid will be hidden for extreme emergencies.

I miss my mojo. I miss dashing around with verve and energy. Today's exhaustion allows me to say, "You're recovering from surgery; chill." Carol will stop by later and there are many I can phone. YOU are beaming me love, wishes, lit candles, encouragement.... you! My landlady (a Master Gardener) left a vase of her roses by my back door. I haven't said the Daily Office in ages; most of my prayers now are "Jesus!" when I'm heaving or saying The Jesus Prayer when I am frightened:

Lord Jesus Christ, Son of God, Have Mercy on me, a sinner.

"O God, You are my Rock and my Salvation, to You I cling during this dark hour of tribulation. Hold my hand tightly, for I lack even that little strength I need to hold on to Your Hand."

Tuesday, July 12, 2011

are you a good cloud or a bad cloud?

Nearly 12 hours in bed - well, my new "bed" of the living room sofa. My $300 Home Consignment gooshy fun oversized why did I buy this thing? is now my comfy 2nd bed. I readily slip from one side to the other and even the effing drainage tube tweaks only for a few seconds. Yesterday I awoke feeling druggy jet-lagged since I had pseudo-slept in one-hour blips for perhaps 6 hours. Horrid. Utterly horrid. It was Monday morning, but by gum I was on my way to SOLUTIONS, dammit!

By 3:15 pm, another round of mayhem and no solutions. Drove to Novato Community Hospital with an E-Ticket from Metzger's office for interventional radiology. Waiting for x-rays. Waiting for Alex bleeping Metzger's office to return from their fat 'n sassy one-hour lunch. (If this is an emergency, hang up and dial 9-1-1 now. I don't want to dial 9-1-1 now, you bastards, I want to talk to YOU). Curled up in my car in the Hospital parking lot because it was better to be there than the waiting room and I didn't have the oomph to drive the 4.3 miles home or to even swerve over to Starbucks in the adjacent shopping center. Lost connections re-establishing a flow of "next!" with radiology, then soon back in there for the thoracentesis I was now desperate for…. suck some of this out of my lung area, I can't breathe, please help me! And then PLEASE replace the tube with a larger one, too!

They could do neither. "You have loculations…. little separated pockets where the fluid is held. If the tube or even our needle goes into one, it doesn't take the fluid out of the others. We can't help you." I was weeping, which has now become really hard since I can't take a decent breath.

A Church friend on hold to visit since the morning was blown off for this? He'll come today, but really…. but really…..

My nose is slammed up against a wall of what next? I spent four days of hell in Marin General Hospital, to which I. Will. Not. Return. What part of NO don't you people understand? Yet I inherited my current now questionable duo of Metzger the oncologist and O'Dorisio the thoracic surgeon from there. Wanna see 'em again? Go back to MGH. I'm not going back. Vee have a problem. I say "no" and I get that veiled look of "You're not very cooperative, are you? Bad girl. We are the doctors. We tell YOU what to do, remember?"

Like hell you do.

Metzger is on vacation 'til the 21st. His office staff - you know, the people who answer the phones - were plucked out of some stoner haze middle school. And only yesterday I discovered that even if I went to Santa Rosa to be seen by O'Dorisio, he couldn't help my breathing any more than has been done.

The nose is up against the wall and it hurts.

The CT-guided biopsy for the mediastinal mass is still on for this Friday the 15th.

I have an appointment with Seattle Cancer Wellness Center for Thursday, July 21st. {Thank you, Anonymous}. One afternoon. Am I able to even fly? Book it? Ask for someone to come with me? I feel like Dorothy in The Wizard of Oz, who just wants to go home again… I just want to BREATHE again. Screw the maybe cancer and their long-syllable'd diagnoses…. I want to effing BREATHE! And nobody in conventional care seems able to help me today.

I will sleep and pray and suck supplemental O2 and have my friends come over one at a time and do one load of laundry one at a time and see where this goes. One day, one hour, one teary breath at a time.

Wednesday, July 6, 2011

some news

Each day I'm too baffled and overwhelmed to write about what's been going on. Each day brings more details, options and sidetrips, making trying to spit this out a more gargantuan task by the day. I am also severely impaired and have been for weeks, which makes doin' stuff just that much harder.

My early June Northwestern healing journey was going along fabulously well until I landed with the Oregon monks gasping to take a proper breath. That was Monday, June 20th. Stumbling through an inability to get my head around this sudden onset of whackjob symptomology, even supported by phone by two of my naturopaths, I limped towards home with a 7-hour side pause at the Rogue Valley Medical Center ER (Medford, Oregon) on Wednesday, June 22nd. What do you MEAN my right lung area is filled with fluid? A pleural effusion? What do you MEAN you've suctioned out over a litre of fluid and more remains? What's this with some "fatty tissue" you're spying in an area behind my breastbone, all of you using such long medical names to confound the easily perturbed? I had full body CT scans four months ago and except for the mildest ?? or two, was FINE!


Put on your racin' space hat. Two more ERs including a 4-day hospital stay from HELL (hear ye, hear ye - Marin General sucks!), one thoracic surgeon and one oncologist doing phone and bedside dances with me, test after test after…. you get the picture. I sit here now in my own Novato home, having begged to be released on July 2nd, with a "to go" garden hose attached to my rib/back area feeding a continuous fluid drain. I have breathing apparatuses because when one lung is virtually non-functional, it's really hard to get enough oxygen. And the dratted little oncologist - hunters that they area - had the audacity tell me that there is a 90% probability that I have an extremely rare and aggressive form of non-Hodgkins lymphoma. Here's its name: "precursor T-cell lymphoblastic lymphoma- leukemia".  Less than 1% of all non-Hodgkins lymphoma. 

It's not the leukemia! It's not the myelodysplasia! It's connected but separate.

This does not make me feel better.

Now I'll copy-and-paste from the emails I've been sending out…..:

Oncologist Dr. Alex Metzger had sent samples of the pleural fluid to Los Angeles for some test called "flow cytometry." Prior to that tests of the fluid showed NO signs of malignancy! It should and will be followed with a CT-guided biopsy of the tissue mass in the anterior mediastinum (behind the breastbone)… besides the fluid, there are also "ceptations"… pockets of fluid… bla bla bla. This came on suddenly but evidently has been growing for 4-9 months!

I asked him, "Without chemo, how much time do I have?" And he replied, "With OR withOUT chemo, 4-12 months."  

"Don't some people LIVE through this?" I said. "Yes, they do, but we don't have great treatments for it."

I'm not getting chemo. 

One of the "WHY?"s drips with irony. The oncologist told me, "The primary cause of secondary cancers is the treatment for the first." 

Of course as I had learned that over two years ago, I slowly stepped away from cytotoxic therapies in early 2009.

My thoracic surgeon Dr. James O'Dorisio encouraged me to get a 2nd opinion. This I will do, of course. First order of business is having my lung area finish draining so I can breath properly again.

I cry mostly when I pray. My worship communities have been glorious in offering support. My focus TODAY is: (1) Get my lungs drained, healed and functioning again. (2) Get the biopsy and CT scans of pelvis and abdomen this coming week at Novato Community Hospital - hey, at least it's as an outpatient! (3) Pray and make decisions based on the grace of God and not my own intermittent hysteria. From last Saturday's "terminal" news I have since trolled around online for holistic cures for aggressive lymphoma. I have made initial plans for last months on the planet as well as considered that this is a high order test that I may in fact live through with an unbelievable amount of work and grace.

I am open to a miracle of healing as well as growing in acceptance of death's presence in the not-too-distant future. I have said that I will go Home when the Lord calls me. Funny how I have an opportunity to mean that now.

If you're a prayin' person, I ask for your prayers.

Monday, July 4, 2011

I feel like a spinnin' top or a dreidel

As well I feel like a teenager sprawled on the floor, listening to a song that says it for me! I suspect I'm being a bit harsh with myself. However before I say even more, this song blurts it out it for me today. If I was a better Christian I'd be quoting Scripture, to which I return daily.

This is the best recorded version I could find without uploading one of my iTunes tracks to some external site. Why is it so hard to upload a sound file to these blogs ANYways? So you get a static photo but the best recording by one of the best songwriters of the last 100 years. I covered this song when I sang with my Seattle trio OWL and could get lost in the angst for those few minutes... with only 2 guitars and keyboards!

We had fun.

There's a huge sea change going on and I'm still trying to navigate it not to mention write about it. This is a cherished spot for me to be real. I shall be articulate as well as I can as soon as I am able. Prayers are RECEIVED, blessed ones!

It's the 4th of July today. Go out and wave a sparkler, put on your 1950's best, eat hot dogs and potato salad and ENJOY this day for all the reasons you can. Including because you have it.