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.


  1. still listening and present for you...

  2. Another anonymous...we must be proliferating... ;-)

    I don't know if you've seen this site, but the second one on the page sounds like something that might help with your immediate problem:
    http://worldwidescience.org/topicpages/c/chest+tube+drainage.html And if the doctor you're currently seeing won't consider it, it's time for a new one. By the way, apparently, lymphatic drainage massage can be quite beneficial for helping get rid of the pleural effusion.

    It's one of the more annoying things about modern medicine and doctors that one must become one's own advocate. It's doubly hard when you don't feel well. If you need the support, have a friend come over and help with finding another doc or just getting to the clinic. I know that there's a lot of "I should be able to do this" and "don't want to burden anyone" out there, but why waste energy when there are people out there who would love to help you? Since right now, you don't have a lot of strength to take on everything, pick your battles and let others help you with the rest, including getting ready for the trip up here. I think that opinions from people who see beyond the ordinary to what's possible are important right now. People who will listen to and work with you, that's what you need. To be treated as a person, not just a patient.

    We are all breathing with you, wishing you lungfuls of health with each breath you take. May the Divine lay hands on you and make you well.

    Hugs and blessings

  3. My fervent prayers are going up for you at EVERY ONE of our daily offices, as well as all day long. Lots of love and hugs.

  4. Robin and I are praying for you and St. Paul's in Seattle for healing!

  5. Diane

    Oh, but that sounds awful. I am so sorry. I, too, will be fervent with prayer for you. I appreciate you keeping all of us updated. You have many friends here praying for you. And I'm praying that your medical "caregivers" will be responsive and available going forward. I feel so bad picturing you waiting in your car for a Doctor to show up. Listen - ...you be needing to be riding with a friend to your appointments - it's too hard to drag yourself around if you are feeling so poorly. Praying for peaceful, good rest, courage, good friends and easy breathing.

    For some reason, I am having trouble posting with my Google log-in, so I'll post anonymously.

    A warm hug and blessings,

  6. Wishing you strength and love and heart for your trip to tests tomorrow. I hope and pray for the best of outcomes for you. I hope you have someone to go with you, for company, for support, to take over if you feel unwell afterward. And I wish you the joy of coming back to your home to rest, to recover, to heal.

    May this turn out to just be a blip on the radar. We're all praying with and for you. Rest easy tonight.

    Hugs and blessings

  7. Biopsy and CT scans today. Throat parched from fasting and O2 up the nose. Despair. Friends come visit, bringing God and I rise; they leave and I sink. I am desperate to become whole again.

  8. Hope is the word which God has written on the brow of every man. - Victor Hugo

    Do not despair. Despair is that black well that it is all too easy to sink into. Reach out and let Faith take your hand and pull you up. Remember that Faith and Belief are easy when life is good. It is when times seem the bleakest that we need them the most. They will carry you through the darkness to the Light again. Cherish those moments with friends and let each one buoy you up a bit more, until you are standing again. Let Faith push back that demon of desperation and abandonment, and allow yourself to feel whole and healing.

    "I do believe that most men live lives of quiet desperation. For despair, optimism is the only practical solution. Hope is practical. Because eliminate that and it's pretty scary. Hope at least gives you the option of living." --Harry Nilsson

    No matter what's going on, I know that you have the strength to rise above it. We're all here, holding you up, whispering our prayers and well-wishes.

    Hugs and blessings. We are all here for you.

  9. comfort

    even in the valley of the shadow of death...

    you know Psalm 23...He is there bringing comfort...maybe he comes to you with your friends instead of His rod and staff...but He comes...
    And remember the good ol' program... just be about what you need to do to get through the next hour... and add a few teaspoons of value and meaning.

    Friends may bring God to you... but just maybe you are bringing God to them.


  10. Diane, do you need a pickup still at the airport and a ride to Seattle Wellness Clinic... John might be available to do that... And you know we only live 4 blocks from the airport... Blessings on you my dear friend!!! We love you!!!!