Wednesday, July 6, 2011
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.