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!

WTF?

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.

14 comments:

  1. My first thought when I heard was that it was lymphoma again -- my second thought was that it might be a healing crisis from the Oxygen therapy --my third idea is not an idea but a sigh, and a prayer. There are no words Diane - just flickers of light that will grow brighter the closer you get to seeing our Saviors face. I will journey with you as far as I am allowed to go without stumbling into the kingdom that waits for you. You will not be alone. Lots of love for now. More later. And afterwards? You will be exploding with light!!!! So let me do my best to send the flickers you need now. I, too. am crying.

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  2. First a question: has the doctor received the results of the flow cytometry or is this an "educated guess"? And then, have you thought of this place: http://www.seattlecancerwellness.com?

    That being said, now I understand why you said you were trying to breathe with help. We all breathe with you. Lean on us, we who are flames of souls who read and pray with and for you. Open yourself to the Divine and allow yourself to receive the prayers, the healing, the love from all of us. And let the Divine direct our light, our prayers to heal you and bring you back to wellness. Receive again that healing touch that you experienced with the nuns.

    You are not your numbers and you are not this illness. Many of us will light a candle tonight and pray for your health. I will go to Blessed Sacrament tomorrow and light a candle there, as well. You have beaten all of the odds so far, that there is no doubt in my mind that you will overcome this as well.

    Remember, you are never alone.

    Hugs and blessings to you! Please continue to update us.

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  3. PS--Do you really think the Divine would bring you this far to let you fail? Naaaaah.

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  4. I sit at my desk in stunned silence, tears flowing thinking of how God brought us together in 1988, and again in 2009 and how you, as a beautiful, loving person, changed my life path with a simple email to go on a spiritual golf trip. My love and my one day at a time smile are with you.

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  5. All - bless you! "Anonymous", you're something else. I'm actively snooping around the Seattle Cancer & Wellness Center site. This could be a right proper "2nd opinion". How'd ya get so smart? I even thought of staying with the Healing Prayer Sisters again in Tacoma and commuting. As Judy Tenuta would say, "It could happen!" In the meantime, I'm juggling the local docs and praying and doin' me best. Incidentally, the onc HAD received the flow cytometry results but we need the needle biopsy to "confirm". I think it'll be wise to put off tomorrow's scheduled biopsy 'til my inner juju is a bit stronger (ever try reading patient reviews on Versed? They're terrifying). First things first - breath. BLESS YOU.

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  6. ummmm...research. :)

    What about putting off the needle biopsy 'til you get that second opinion? I mean, why get two? And staying with the sisters again would be balm for the soul while you're going through all of this. Versed sounds truly nasty. There must be something else out there.

    In the meantime, while you heal, there's always research into what else could cause pleural effusion. Add to that looking into healers that will support a holistic approach to finding out what's really going on. The more eyes and minds on this, the quicker you'll be healed.

    Hugs (gentle long distance ones) and blessings!

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  7. Oh, I can't see needing a biopsy for each opinion - this is a one-shot (so to speak) op that will Name It. It needs to be done. Not today, tho ... breathing more labored, so I intuited properly I believe to put it off 'til sometime next week. How I would yip in the hills to have another benign cause to the pleural effusion! And yeah, Versed with fentanyl...sucky but at least they're standing by to purportedly alleviate any surprises. Hot tea and hugs go sooooo far for me now :-)

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  8. There's also this here in San Francisco... need to do my homework on both:

    http://www.osher.ucsf.edu/index.html

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  9. Diane...my prayers coming your way...with love, Suzanne...

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  10. Definitely research on both is warranted. BUT, I believe that Felicia Dale's mum is going to the one up here, plus there are the lovely sisters, plus friends to visit up here.

    Heal those lungs first of all. Eat all of the things that would strengthen you in body and spirit (and a little chocolate wouldn't hurt), and build yourself back up. Then tackle the next part. Listen to music and talk to the Divine. Oh, and tea. Always tea.

    Hugs and blessings!

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  11. Another place to research: http://www.nwnaturalhealth.com/

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  12. Prayers being sent from Seattle sweetie. You are often in my thoughts and prayers and I always look forward to your posts.. Tonight, not this one so much... I have walked this path with a loved one 11 years ago this month and I understand the journey you are on. You are one tough little cookie and you have a wonderful focus and faith... You have many that are with you, offering up prayer for direction. Not only for you but those that are put in place for your care... You are loved..

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  13. See? We're all out here, cheering you on. I hope that it's a lovely, healing weekend, and that you can either get to church or have them come to you. Wallow in the love that's out there for you. You deserve it.

    Hugs and blessings

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  14. Monitoring, listening and present for you... hang-in sweetie... RB

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