V's Version

Hooray!!! My hard-working, Legally Blonde-inspired sister has passed the last of her demanding LPC (Licensed Professional Counselor) exams!!! In the United Kingdom (where she studied and lives) this is synonymous with the Bar Exam here in the U.S.

Dani had a lively dinner with my sister last night in SoHo. This morning I received this email from Kat:


She passed with flying colors and now begins her life as a bona fide lawyer in London!! I am unspeakably proud of my sister. She is an incomparable inspiration to me.

And as an addendum to our joy for Kat's fine achievements...

The Boston Red Sox are still in the play-offs! As devoted fans, my family tunes in to the baseball games no matter where we are in the world - even if it is in the wee hours of the morning (which it is in London or the North Sea where my father is.)

(It's just a game but still I am pleased...)


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Labels: Boston Red Sox celebrate LPC family law exams

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Labels: Unitarian Universalist lesbian family peace inherent worth UU faith interdependent web

Many poems have been sent to me and I am incredibly grateful for the creative sparks that are flying. Anyway - in this one particular poem, Emily describes an experience that I think we all have at one point or another. We can - if we bring our focus to the here and now - begin to see the extraordinary in the ordinary. We can see the beauty in the mundane. In this case - she noticed - really noticed - the mouse pad that she uses and the photograph of liquid crystalline DNA that is printed on it.

Purple for V

V for violaceous,
a synonym for purple,
a symbol of pride.

Today, I am the beholder,
and art is in my eye.

I see my water bottle,
encasing 78% of my well being
within a resilient
translucent heliotrope plastic skin.

I see purple T-shirts
worn by a troupe, out of solidarity
in keeping with their original goals
having formed under a banner of UNITY.

I finally notice the plethora of purple
on my very own desk,
Ungraciously honing my craft
on a canvas I've apparently been taking for granted.

Constantly fine-tuning my fine motor skills
sliding the palm-shaped mouse
across this micro-velvet mouse pad
this micro-velvet masterpiece
framing a pattern made for mesmerizing.

Some local company tried to plaster their name on it,
but they couldn't hide the hints of sun-ray orange
shining through in a cave full of purple.
Jagged pieces of amethyst and violet stalactites

coming together in this liquid crystal structure.
A deep purple cavern
full of sapphire, spinel, sugilite, and charoite gems.
Everything a hue for strength and healing

creating a symphony of violet, sapphire, lavender,
I see specks of lilacs, plums, heliotropes, orchids
bushels of wisteria
dotting this violaceous landscape.

Science is cold and unforgiving,
but who could deny the inherent beauty
of this photograph, this unfeeling view from a microscope
printed on this cheap foam rubber canvas.

The title says "Liquid Crystalline DNA"
but whatever they want to call it
All I see is a challenge full of jagged edges,
compelling me to journey through,

leaping with nothing but faith to guide me,
millions of Amazon foremothers to push me,
thousands of Amazon sisters to beckon me,
a will of iron to drive me.

I feel all this from the amethyst lavender
lilac violet orchid plum blue-red electric purple
hues streaking through my corneas
electric vibrations buzzing down optic nerves,

impulse responses to wavelengths of light.
Feeling peace.
Feeling power.
Feeling purple.

When I think of the ramifications of this poetic experience - of how there is such beauty and wonder in the world - it helps me to counteract the overwhelming waves of sadness that I have when thinking of the women in Darfur - the monks in Burma - all living beings in war-torn places - all people battling disease and depression. I don't want to pretend that these things are not happening. I want to do what I can do from the place where I am.

What is important to me is to continue to stay present - in the sadness AND in the wonder and joy. If I lose sight of the positive things - how easy it would be to be swept away by the rest of it.

In the above photo, "The incredible play on color exhibited by this liquid crystalline DNA specimen is simply beautiful. Focal conic textures resembling fans form a unique pattern that shifts from purple to yellowish-orange in color. The DNA concentration for this specimen is approximately 400 milligrams per millimeter, and the magnification is approximately 375x."

Woah. And think of it - this is everywhere. We just can't see it. But it's there.
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Labels: cancer lymphoma liquid crystalline DNA purple PNP Paraneoplastic Pemphigus PV immune hope optomistic support system women mother with IVIG IGG intervenous gammaglobulin

I am honored that people are so generous with their thoughts and prayers and time and energy. I wish that all people who are sick (or sick of heart) could experience the outpouring of love that I do. We all deserve such attention and I am not sure why some people experience it and some do not.

I am struck by the contrast of my situation and that of others in my life - a long-time festival friend who is battling with depression, a fellow church member who despairs at the economic and social inequities in the world, young children who know no life outside of hospital visits. I want the mums to be for them too. I want to share the blessings I am given but I am not sure how to do it.

My blog and my quilt portfolio are being viewed by people all over the world. I was stunned to find people in India, Poland, Australia, Tasmania, The Philippines, the U.K., Spain and Russia - just in the last week! I can only hope that somehow I am helping by just sharing the journey - holding out hope - being available to answer questions about the process and my own experience. The personal connections that I have made so far are very gratifying. It means so much having a purpose to all of this.


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Labels: positive story hope cancer paraneoplastic pemphigus journey blessing

For my new website (including the V's Version blog), click here.

For an un update about my medical journey

specifically with Lymphoma and PNP, click here.

When my skin showed no improvement with high dose prednisone and immune suppressive therapy, Dr. Shields ordered a new CT scan, suspecting that I had Paraneoplastic Pemphigus. (also known as PNP, the more rare - and almost always fatal - form of pemphigus that usually has an underlying cancer). A biopsy was taken and sent to the dermapathology laboratory at Johns Hopkins in Maryland where a test for PNP would take a few months to show results. Meanwhile, the locally administered CT scan showed a 15 x 12 cm mass (determined to be Lymphoma (Non-Hodgkins)) in my abdomen in the upper left quadrant. I was referred immediately to an oncologist who started me on chemotherapy the next day. This was December of 2002. I was told that "it will be easy - a cake walk" to get rid of the lymphoma.

My first chemo was Rituximab and because I had an allergic anaphylactic reaction (uh-oh), this course was discontinued immediately. I started 2 CdA chemotherapy with allopurinol (an anti-gout medication) and IV saline because of severe dehydration from being unable to eat or drink due to the lesions. I lost a lot of weight rapidly. I was treated for burns with silvadene.




In addition to my local oncologist, ophthalmologist and dermatologist, I saw dermatologists and ophthalmologists at UC Davis, UC San Francisco, and the Proctor Eye Clinic (where they were thrilled with the textbook scarring of my eyelids but offered no hope for relief with my impending blindness).

Please note that whatever rash that can be seen on the outside is just the tip of the iceberg. The soft mucosa in every area of my mouth, parts of my throat, sinues, lungs, vaginal canal and eyes were (and sometimes still are) ravaged.

With the results from Dr. Grant Anhalt at Johns Hopkins that I had a confirmed diagnosis of Paraneoplastic Pemphigus. I insisted on trying IVIG (60g/day 3x every 3 wk) before I saw the $10,000 a day pricetag. (Insurance is another story - contact your representative today.) I was treated simultaneously with 60mg (!) of prednisone/day, IV saline , 2 CdA chemotherapy, Cell Cept (another immune suppressive drug), pain medications, topical steroids, topical lidocaine, anti-constipation and anti-nausea medications and occasionally antibiotics and thrush medication, depending on infections.

By the fall of 2003, the very worst of the skin blistering had been been stemmed but the damage done to my eyes caused severe dry eye that worsened with time, damaging the cornea and causing an inability to open to open my eyes for any practical amount of time. As a quilter and a mother, this was devastating. I took Restasis eye drops (a feeling akin to dropping acid in my eyes) due to the ocular involvement of the PNP. It was an attempt to increase tear production. Unfortunately, it is almost impossible to increase tear production when there is no tear production. This is an intensely painful situation.

Although the steroids took a serious toll on my joints and gave me a "moon face", I lost 130 pounds due to the Lesions in my mouth. I was mighty glad that I started off as a fat-positive, 250 pound woman who loves life!



In the summer of 2004, against medical advice, I discontinued all antibiotics, pain medications, prednisone, immune suppressive medications and I took a break from chemotherapy, despite the remaining lymphoma. After the initial pain of an unexpected divorce and a couple of seriously close brushes with death from a pulmonary embolism and a port-a-cath infection, I had the notion that I needed a break from the relentless western medicine. I spent a lot of time writing, laughing, listening to comedy and listening to music.



For the next two years, the cancer continued to shrink in my abdomen but migrated to my lungs so when it was possible, I continued with chemotherapy (Doxil and Rituxin which had to be administered in the hospital due to that initial adverse reaction in 2002.) Throughout the years, I tried several alternative practices including (but not limited to) herbal and vitamin therapy, acupuncture, yoga, tai-chi, Native American healing and reiki. People swore by a wide variety of drugs, physical and mental practices, religeous rites and miracle cures. Most of the 427 suggestions offered to me were not personally useful.


In this process, I became fully blind and began mobility and orientation training and Daily Living Skills with the Vista Center for the Blind (formerly the Peninsula Center for the Blind). I was unable to find consistent transportation to chemotherapy but in 2005, I had my sight fully restored by
where I was fitted for prosthetic sclera lenses. They are AMAZING! Because I could see and drive again, I was able to receive chemotherapy. I created the "Eye Can See" quilt as a token of my undying gratitude.

After a glorious one year remission between 2006 and 2007 (in which I remarried, launched the A Lot of Life! website, started home schooling again and began to enjoy my 40s with gusto), the mouth lesions returned. I have taken chemotherapy (Rituxin) and IVIG off and on since then.

After years of infections, pneumonia for which I was twice hospitalized in 2008 and pulmonary problems, I am now anti-biotic resistant. I suffered from severe sinusitis (all available areas infected) for years. At the end of 2008, I underwent surgery for a deviated septum and two surgeries that involved all my sinuses. It was grueling and painful but I hoped that it will alleviate my breathing problems. Alas, it was not to be.
As of early spring 2009, it seems as if I have Bronchiolitis Obliterans, the pulmonary obstruction disease that most people with PNP die of if they manage to survive the initial stages. My airwaves are blocked and I cannot breathe fully. I have infections that I cannot shake in my lungs and will probably just live out my remaining life with decreasing pulmonary function, hoping that I avoid fungal (or fatal) infections.

I live in heinous pain every day of my life due to the scarring in my eyes and the mouth lesions and the breathing difficulties. I could never have done this without legions of help. You know who you are and how grateful I am. 

Please feel free to ask any questions and to link to this page freely. I can be contacted through the contact page. The archives and current writings of my online journal can also be found on this page. I want to help in the time I have left. Please share your stories while you can.

For my new website (including the V's Version blog), click here.

For an un update about my journey specifically with Lymphoma and PNP, click here.

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Labels: cancer lymphoma PNP Paraneoplastic Pemphigus immune hope optomistic support women mother IVIG IGG intervenous gammaglobulin bronchiolitis obliterans pulmonary obstruction

I went to Women Care today. That is where there are support groups and referrals and advocacy and a whole rack of free hats for women with cancer and their families. Bless them. They helped me so much back when I was very ill.

Today was a treat. There was a writing workshop for women with cancer where I met sisters in the struggle and our facilitator, Ana Hays. She gave us writing prompts like "The curious thing about life is..." and "Inside of me..." and she suggested that we write about a special friend. She gave us a list of 129 words and asked us to choose ten to make a story. She shared her poetry to use as a springboard for our own.

Below are the first drafts of what I came up with in the short time we had together. I had a very good time and was still able to meet with Pk to pick out fabric for the Halloween costume that Dani promises to sew AND help Dani get ready for her flight to London. Life is good.

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Inside of me -
What do I see?
Swirling pumping blood through veins of purple hue?
It's true.
We are made of the same stuff as the ocean and stars,
butterflies and mars.

Inside of me is more than the salt water stuff though -
More than you will ever know
because not even I
understand my insides
Although I try.

Inside of me is a yearning
for enlightenment -
A chance for learning
How to get it right.
Hearing a friend with an open heart -
Now that's an art
worth practicing.

Inside of me are 10,00 stories -
Each of them interest me
But it's the point of view of loved ones
I want to see.
I want to truly understand what makes my family click
I want to connect and stick
and harmonize.
I want to empathize.
Learn with passion -
Listen with compassion.
It takes action.

Inside of me is cancer.
And I don't have the answer
of what comes next.
But 5 years in -
I have a context.
I know what to expect.
And that's better than most
who host
This insidious visitor
who resides
inside of me.

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OK. So the prompt is to write a story or a dialog or a memory about "your special friend" and I bristle at the thought. Aren't ALL of my friends special? Aren't all of the people who are not my friends special? Isn't everyone special in their own ways?

Rather than choosing one particular friend - a task (given the number of friends that I am blessed with) that would take the entire writing time and seems daunting - I think that I would rather write about someone who- maybe - wasn't a special friend at all. Someone who - maybe - wouldn't even like me. Let's see how that goes.

"The name on this card doesn't match your license."

"Oh. Yeah. Well - it's actually my wife's card - technically - but I have permission to use it. I could use another card if you want."

"Your "wife"?"

"Yes. Danielle. See right here? 'Danielle Hope' on the card? - - Haven't you ever seen partners use each other's debit cards?"

"That's different. They were married."

"I see. Well - are you married?"

"Yes - but gays can't get married. - Can they?"

"Umm. Well - it's complicated. But the love is the same."

"That's not love. It's sick."

"Actually - I am kind of sick. I have cancer and I start chemo when my partner gets back from London next week. I don't know what I would do without her. She's my anchor."

"My mother had cancer."

"It's hard."

"Yeah."

"It's important to have love ones around during the fight."

"I was there at the hospital every day with her. I brought my Dad. At the end she got smaller and smaller."

"Mmm. Was it difficult to watch?"

"Not for me. I mean I took that hospice training class so I knew what to expect. But my father had a tough time. He really loved her."

"I'm sure he did. - I'm glad she had you there. - And I am glad that I have my wife and son by my side. You see - there is no paper that makes us a family. We just are one."

"Hmmm. Do you want your receipt in the bag?"

"Nah. I'll just put it in my purse. Thanks. Take care - OK?"

"Yeah. you too."
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The bold words are the ones I chose from the list of 129 prompt words:

It was nearly midnight. Flirting throughout the movie had been fun but it had it's limits. those halcyon days of slipping into a bathroom stall for a quickie evaporated with the comforts of a warm pillowtop bed and a door to close.

How could it be that we were the only ones on the elevator? The cineplex was packed with people but there we were - the only two people staring at he ligh changing from 4 to 3 to 2.

Clunk.

The elevator came to a halt. Turning to Dani with surprise, I caught the glint in her eye.

"Now's my chance!" she said gleefully and took my face in her wide, warm hands. The kiss rippled through my body as the hands moved down across my back and over my skirt.

Her voice contained mock accusation.

"You're not wearing any panties," she murmured into my ear.

"I was wondering when you would notice."

She used her lips to caress my neck as she reached under my skirt to cup the flesh of my thigh. I unzipped the front of my thin black jacket to expose my new scarlet lace bra where she nestled her head all cozy and adoring.

My heart beat faster under her longing.

What if there were cameras in here? What if we were stuck in here all night?

Nuzzling the top of her head and running my fingers through her spikey hair, I smiled at the thought.

"I hope it takes a while for the repair person to get here," I whispered.

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The curious thing about life is how it is all works together. The interconnectedness of plants and the sun, the sun and gas, gas and breath, breath and words, words and stories.

Often that song comes to me in snippets of sound:

"Why have we come to earth?
Do you remember?
why have we taken birth?
why have we come?
To love, serve and remember.
To love serve and remember to love."

I remember so clearly the vision I had about my purpose in life - YEARS before I ever heard the song, there was the dream me in the forest with the crystal clarity of a mandate:


The curious thing is how to do that - how to infuse my life with these simple tasks. What does it mean to love? Whom should I nurture? What shall I create?

My curiosity is evident in the way I question the words I speak - the way I question education and systems and learning and political candidates.

The curious thing is that I have so little time on this earth to do so much. I wish I didn't have to sleep. Or - rather - that there could be a swarm snuggly me for Dani and Parker adn then another stay-up-all-night artist who could work into the wee hours just before dawn.

I want to BE love. I want to find the balance between nurturing myself and nurturing others. I want to create something worth keeping.

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What matters then?

The fiberous connections between a parent and child. The intertwined vines between lovers and friends.

What matters then?

The moment when connection is broken and there is the shocking disharmony of separation.

What matters then?

The rickety fragile bridge that spans the divide.

What matters then?

The love and courage and humility it takes to walk across that bridge.

What matters then?

The hope that the bridge will not fail and that the connection is worth making.

What matters then?

That wings will sprout and flying is possible even if the bridge fails.

What matters then?

Faith.
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Labels: cancer writing positive poetry family nonviolent communication NVC

This blues musician is one of Pk's best friends. He is - unbelievably from the sound of his music -Pk's age. He blows me away.


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Labels: blues kid musician boy guitar amazing

Pain every day - all day - never go away - pain.
This tongue - swollen - marred with lesions – carved open with crevices and buffed down to the bare pink raw cells that tell me to pay attention. Tell me not to over mention the relentless distress that is my constant mistress.

This tongue – vibrating from vinegar – screaming from salt - keeps me from forgetting former food-less days. Keeps me with great gratitude clinging to the sting, letting it sing the lyrics of my life:

“She brings the power of pain to change.”

Yeah she does -reminds me in so many ways that it could be worse. It could be a hearse. So even when water hurts: Be lucky for
Pain every day - all day - never go away - pain.

These eyelids – burning – scarred with skin gone and grown back and gone again. No way to make tears, my dry eyes can’t cry so why try? Better to make the best of it and remember the days when I couldn’t see the trees – couldn’t see the bees – couldn’t even see my own wrinkles increase. Better to give in to the power of Pain every day - all day - never go away - pain.

These eyes – the cornea endures the unholy harsh scraping of sandpaper scars like repeatedly rubbing a dry eyeball with tiny grains of steel. That’s what I feel - each night when I use the tools to pluck out the prosthetics of liquid loveliness. Heat hot scalding red burning in my head – you can feel the flames from an inch away. “It’s not that bad,” I say.

I am lying.

But still – I am trying. Trying to take the pain and choose to change. Choose to use the pain and make it into a tool.

I’m not a fool who forgets the livid vivid lessons lived in the shattering of so many shards. I take the cards dealt and play the hand I’ve been granted.


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Thanks for being on the journey with me.


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Labels: plastic pemphigus positive poetry change cancer PNP

On Oct 11, 2007, at 6:02 AM, Bonnie Colfer (my distant cousin) wrote:

V -

Much Love and Best Wishes to you, Dani and PK during this time. I find you to be so very very inspirational. You are so incredibly articulate when you write and your creativity in making your art is beyond words. PK is certainly lucky to have you for a mom.

Attached are some photos of your great grandmothers quilts (Josephine Miller Merrick). I am not much of a photographer but I hope you can get an idea. These are all hand quilted.

I would love to send one to you. Can I get your UPS address?

Again, my best to you on your newest journey.


Bonnie



Bonnie Colfer
FUN - Tastefully Done
Empowering Women to take control of their sensuality
207-582-1653
http://www.foryourpleasure.net/tastefulfun
Discreet Parties for Woman
Independent Business Associate
For Your Pleasure



Bonnie -

Oh my goodness. I am sitting here alone in my living room crying - my body is truly shaking with disbelief and joy. Only two nights ago - for the first time really - I was mourning that I had no evidence of what I knew had been a quilting tradition in our family. I never even thought to ask if anyone had one of Josephine Merrick's quilts. I met her only once that I can remember (I can still picture her kitchen) but I knew that she must have quilted. My grandmother Dorothy does. Josephine - of course - was my mother's name as well but she was not at all interested in tradition or quilting and somehow I yearned for a connection with the past. I had only put that thought and the sadness of it into words just two days ago!

And here is your email. I am stunned and grateful beyond words - beyond any incredible articulation.

Thank you so so so so much for thinking of me. Thank you for keeping these precious links to the past safe for all these years. Thank you for your offer. I will accept any quilt with grace and gratitude and a request for any information or stories that might come down with the fabrics. I especially like the Trip Around the World with all of it's colors and hot pink binding but the hand sewn blanket stitched tulips in yellow sashing are lively too.

I don't know what else to say. I am just stunned. Thank you. Thank you. I am crying again.

V



PS
I see by your tagline that we might have even more in common. I've been a sexual educator for almost two decades. I wish you well with your business and truly believe that you could make a positive difference in many lives. Let me know if you have any questions about the work I have done in this area and good luck on the 13th! I'll be thinking of you!

Labels: family quilt gratitude hand treasure

Sometimes I huff up to a redwood cathedral in my neighborhood, flop down on the duff-covered floor and look up. I especially like to do this on stormy days when the wind is so dynamic that it brings my own mortality into very close range as the trunks of mammoth trees sway like grasses.

I am so small in the scheme of things.

In the center of this swirling cathedral with redwood falling from the trees- in my smallness - I keenly sense my inter-connection with people, plants and planets. It is on the very edge of life and death and change and choice that I find meaning.

Labels: meaning life small redwood cathedral

Studio Art Quilters Association
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I guess I am going international.
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What was I thinking?

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Labels: studio art quilters association professional development quilt lecture documentart

For the Michigan Womyn's Music Festival Bulletin Board

My one year ride of remission was fun-filled and action packed. I got married. I finished many quilts and launched my website. I started home schooling with our 10 year old. I gained some weight and made a few documentaries. I wrote a few stories. I lived a lot of life.

But the remission is over.

I start chemo as soon as Dani gets back from a business trip. We would start sooner but Pk is home schooling and it might be easier when Dani is home. We did "hospital schooling" last month and it wasn't that fun.

If you are keeping track - we are in year 6 of the battle. I know many of you have been on this journey with me and your presence has meant everything to me. The support and sheer will of womyn is staggering and humbling. I don't know HOW you have helped me stay alive - but you have.

I guess it's time to ask for the images of various shades of purple again. What purple / violet/ lavender things are in your life?

Reading your answers will, undoubtedly, brighten my days.

Labels: cancer lymphoma PNP Paraneoplastic Pemphigus PV immune hope optomistic support system women mother with IVIG IGG intervenous gammaglobulin, relapse, rituxan, strength

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I start chemo in a couple of weeks when Dani gets home from a business trip.
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I probably don't need to say that I am disappointed that my grande remission ride was so short.
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Dani and Pk are very supportive. Everyone is. Thanks.

Labels: parkour flip gymnastics