V's Version

The health saga takes yet another turn. If you tuned in a couple of weeks ago, you saw that I made the decision to get IVIG treatments at the hospital in hopes of relieving the discomfort of mouth lesions.

If you tuned in last week, you would have noticed that I had some kind of allergic reaction to the IVIG and had a wicked super strong splitting headache and nausea to boot. This was taken care of at the hospital with anti nausea meds and morphine.

If you tuned in this week - you would have heard that I completed the full round of IVIG - using benedryl to counteract whatever was making me have a headache. (Now that I think of it - it might have been the $15,000 a day pricetag for the drug that gave me a headache!)

And now you are here. I am covered shoulders to ankles in red spots and welts. I am unbelievably itchy and uncomfortable. It must be an allergic reaction to the medication. Either that or it was the Chinese food that we ate with Dani's German friends. Any way we look at it - I am miserable.

I tried to take a long-anticipated quilting class with Meri Vahl and made it maybe 2/3 of the way through the class and then had to go.

Nothing is touching this - cortizone, oatmeal, benedryl, Aveeno lotion, arnica...nothing.

I realize that I have a reputation of looking on the bright side. I am not - at this moment - sure of where the bright side is. I am a jumping bundle of nerves trying hard not to scratch my skin off.

Labels: allergic reaction, cancer lymphoma PNP Paraneoplastic Pemphigus PV immune hope optomistic support system women mother with IVIG IGG intervenous gammaglobulin, rash

Dani and I saw a rainbow on the way home from the hospital. It is a symbol of relief both of my headache and of the drought here in California. Today was the first rainfall of any kind in sooooo long - even if it is just a drizzle. And I, thanks to morphine, can think more than a few words at a time.

That was scary yesterday. I had a reaction to the pooled blood product. Maybe it was a swelling of the brain (I know - ha ha - very funny.) I am now hydrated and only had to be loopy for a while. I was also able to keep a little food down. All very good.

Thank heavens for friends. That's all I can say. Our neighbor Stephanie was a doll and helped Pk make dinner. Our friend Lex came over and massaged me and cleaned up my vomit and put an ugly sweater on me because I was freezing from the inside out. Friends from all around thought good thoughts sent emails and prayed for me.

Pk gave me the sweetest image of thirteen fairies dancing around my throbbing head sprinkling it with magic dust. Creating that picture in my mind actually helped when I could focus that long.

Poor Dani was entertaining long time friends in Berkeley and couldn't get home until late but was able to bring me to the hospital first thing.

So I am mighty lucky.
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Labels: pain headache rainbow drought rain California friends hope help

cryingpainhelphurtouchbadreallyreallybad

I don't know what else to say.

I cannot believe the pain.


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Labels: pain

Attention Deficit Disorder
or
Attention Deficit Hyperactivity Disorder
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I am pretty sure that I could be diagnosed with ADD if I cared to go the diagnosis route. (I don't.) I'm pretty sure Pk could be diagnosed with ADHD but I can't quite bring myself to wade through the available professionals to find one who would help us maximize the best and minimize the most difficult parts of the ADHD without drugs.

The traits of someone with ADD/ADHD that I appreciate and what I find that most people are attracted to are the creativity, the constant movement, the ability to hyper focus on a project, the productivity, the pure vitality.

These are the very traits that can backfire. Add a little impulsivity, depression and social criticism and we can get in all kinds of trouble. The story of my life is trying to find a balance - trying to deal with the hand I have been given. I am not a victim. I am a survivor.
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I want to thank Steve McAllister for bringing together so much wisdom in a short space.
Check out his documentary. You may recognize yourself or someone you love.

Labels: ADD ADHD attention deficit documentary creative

Lunch on the Outpatient Oncology Unit

Chair number one can’t keep chicken broth down. She apologizes for interrupting our lunch with her retching. We instinctively reach out to her – insisting that it’s OK. We’ve all been there. We implore: “Don’t be sorry.”

Chair number two likes to eat only local organic raw vegetables. Her husband drives her from Monterey and brings her a special lunch. She swears by her diet and asks if I notice a difference in my well-being when I ingest toxic pesticides. We strike up a conversation about personal responsibility and the power of positive thought.

Chair number three recognizes me. She saw me when I was first diagnosed with cancer and remarks how amazing it is that I have survived. She tells the others that I was very, very sick and they should have seen me. She shares her knowledge of wigs and we compare outrageous medical bills. She remembers with sadness and frustration all the things she used to be able to do but I can see that her beautiful mane of silver has returned and she still has a lot to contribute – including a few good books.

Chair number four is me. Lorna Doone cookies for desert and then a scare for the nurse when the machine reads my blood pressure as 104 over 12! Everyone is relieved to find it 99 over 53 on the second try. The pooled blood product makes me cold from the inside out. My heart flutters as the viscous liquid is infused through my central line.

Chair number five served in World War II and feels fine but the doctor says that he has problems and needs a blood transfusion. For the first time in his life, he tries to eat lunch with his left hand so that he can keep the line of blood going into the right arm still.

Chair number six holds his jacket close to his chest. His young bald head is uncovered and smooth. It is a reminder that disease does not discriminate on the basis of age. He looks me in the eye and smiles as I gladly relinquish my carrot raisin salad to him.

Chair number seven teaches me a new trick. He warms the tubing by putting it under his clothes – next to the skin on his belly. “It’s surprising how much we can endure,” he tells me. We talk about the virtues of laughter and I thank him for changing the quality of my life with the tubing trick.

Nurses take turns attending the cacophony of alarm bells. They bring blankets warmed in an oven. They carry trays in and out, change our dressing, take our temperatures, bring basins and water and medicines. They run between the room of chairs and the room of beds. Every space is filled with people and poles. Asked when the calm day is, the answer comes on the run: “It’s hit or miss. You never know what it will be like in here.”

But I can see what it is like.


It is like a flotilla of life preservers in the fury of stormy seas.
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It is like a hushed locker room when the coach prepares the team for the biggest game of the year.
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It is like a group of kids reaching back across a log bridge as the last ones steady their steps over the river.
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It is like flowers of courage and compassion in a garden of collective wisdom.


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Labels: oncology cancer survivor IVIG IGg Paraneoplastic Pemphigus PNP

New Tattoo by Gilded Lily
New Corset by Clare
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Labels: tattoo lesbian corset

Hey - did I show you this link to a photoshow of our neighborhood? It requires high speed internet. I put it up years ago but not much has changed. Well - except that we are in a severe drought and are looking forward to this green lush again. For now - there are a lot of brown grasses and brittle branches. (Mud slides in winter - forest fires in autumn.)

Oh - and I forgot to mention that I have been having symptoms of the Paraneoplastic Pemphigus. They started a couple of months ago. Blah. So I have to start infusions next week. 8 hours a day - three days next week.

We'll be home schooling from the hospital.

Put good word in for me, OK?

Labels: felton paraneoplastic pemphigus PNP california redwood forest cancer survivor

Weekly Log for Pk (parents V and Dani)
September 4-7, 2007
Charter 25 SLV Home School

Pk completed a children’s online course through the Baltimore Museum of Art focusing on the style and paintings of Henri Matisse.

We followed up this study with a visit to the Museum of Modern Art in San Francisco where we took the audio tour (now on ipod!) of the special Matisse: Paintings to Sculpture Exhibit. We also toured some of the permanent collection since we were there. We attended a lecture and movie about Matta-Clark’s building cut sculpture “Conical Intersections.” Pk also appreciated the sculpture of Dahli and Hamilton’s installation called “Indigo Blue.”

To quote museum literature: “"Indigo Blue" consists of roughly 18,000 items of blue cotton work clothing, neatly folded and stacked on a "floating" steel platform at the center of a room on SFMOMA's second floor. At one end of the platform stands an old wood table and chair. From noon to 4 p.m. each day -- except Wednesdays when the museum is closed -- a volunteer sits silently at the table, erasing, thus effectively destroying, the pages of a book: "International Law Situations," a Naval War College publication pertaining to legally defined land and water boundaries.

We had several follow-up conversations about art, history, rebellion, rules war and interactions. (art, social studies and history.)

We visited the Museum of Cartoon Art in SF. We saw the special exhibits of Edward Gorey’s costume and set designs with pen and ink for “Dracula” and the political cartoon exhibit called “Why do they STILL hate U.S.?” We toured the permanent collection and saw several classic and modern animated cartoons. He made an audio report of this. (art, social studies)

Traveling in San Francisco required the use of maps and the public transit system. Pk helped to locate our place and steer us in the right direction for several destinations. (geography, life skills)

Pk choreographed several gymnastics routines using his home made spring board and a new mattress and box spring (that he researched and found on Craigslist). He practiced for several hours each day all week. He put on three (progressively more elaborate) shows for family and guests. He improvised in addition to the choreography. (physical education and art)

Pk read aloud several state facts about Idaho, Mississippi, Missouri, New Hampshire, Ohio, Virginia, Wisconsin and Massachusetts. (geography and reading)

He worked on his division facts, using the “Math Wraps” and has mastered 1, 2, 5 and 10. (math)

He worked on reading comprehension and metaphors (in a workbook) and independent reading with Harry Potter and a book on pyrotechnics. He was able to tell me about Class C fireworks. He also read several times from the Eyewitness series books on Spies and the Revolutionary War.

Pk studied Non-Violent Communication, working on the concept of compassion for multiple points of view and the notion of a “No Fault” zone in our home. (life skills)

Problem solving skills were used with independently programming a VCR and with a broken toy race car (critical thinking)

He pimped his Myspace, navigated Craigslist and practiced his home row in typing. (computer skills.)

Pk made nutrition choices based on healthy eating habits and the food pyramid. (science)

This week was very social. Pk met with the new families during Orientation where he played cooperative games. The next day he met many people at the Pool Party where he joined several teens in a game of cards and played volleyball, swam and practiced his diving board stunts. (life skills and physical education.)

After the pool party, he had peer-only time with boys from the program and made the difficult social decision to leave their group rather than participate in activities that were happening. (life skills, critical thinking)

Pk and Dani rode their bikes for several hours and then revisited the Bike Church where he independently changed out his inner tube and adjusted his handlebars. (physical education and critical thinking.)

Pk began a 6-week formal course in dog training for a lure course. (what does that fit into? It’s a challenge!)

Baking projects gave him math (measurements and fractions) and cooking chemistry (what happens when extra oil is added? What happens when an ingredient is left out?)

Pk performed a science experiment where he tested an hypothesis, had a trial with one variable and three constants and then found an exciting conclusion using two brands of absorbent material, water and iodine.

Pk has been improvising with musical rhyming lyrics all week. (art)

Labels: home school life SFMOMA children art NVC bike church San Francisco charter 25 California

This is my father, Gordon, standing in the doorway of

a. the guest cottage

b. the garden shed

c. Brook's cabin

d. the storage garage

or

e. all of the above

His visit with his partner Gini was pretty packed. Redwoods, tide pools, gardening, San Francisco. I'm still reeling from the complexity of our father / daughter relationship. During every stage of my life, we have challenged each other. For the most part, I truly appreciate these challenges on many levels. Although I have to admit that the appreciation is only in retrospect sometimes, this trip gave me many opportunities for immediate appreciation. Who but a parent can offer rich lessons, showing both mirrors of myself and examples of the well-trodden paths of family legacy? Who but a parent can bring such joy and cause so much pain? Who can be so close that it hurts?

Having family connection is nearly the highest value that I have as I walk this life. If I was ambivalent about this, my life would be completely different. But this is how it is for me. I am compelled (through great odds) to stay connected to my family and to grow and learn how to better connect with them. It is something of a mix between obsession and spiritual practice and masochism. Family is the most accessible unit from which to change the world. In my heart, I believe that it is my only shot at making a difference.

Well - maybe there is art.

But family connection and the deep intense honesty and communication that it takes to be authentic in a family is what drives my soul. It's humbling in the most basic way to realize how little time I have to do this work and how much I have yet to learn.

Labels: family NVC communication connection authentic

Home School Weekly Log for Pk (parents V and Dani)

This week, Pk was fresh from memorizing the locations and names of all 50 of the United States (before school officially started) and he reveled in being able to show off his feat to anyone who would watch. (geography)

Having just been to the Renaissance Faire with his grandfather in San Francisco, he had fun setting up targets to shoot with his new wooden crossbow and a bag of marshmallows. (problem solving, sports)

After speaking with the House Elf, Harry Potter had a headache at Grimwald Place and later in the week, he and his friends took polyjuice potion to sneak into the Ministry of Magic. (independent reading)

Using a Riot Grrrl, Ink. Feminist coloring book, Pk learned about Emma Goldman, Joan Jett, Alix Olson and (who knew?!) physicist Rosiland Franklin. He used an MP3 recorder (thanks for the suggestion, Kristen!) to make a report about some of the things that Alix Olson protests in her poetry. In doing so, we discovered the definitions of capitalism, homophobia and patriarchy. We also had a discussion about the war in Iraq. (social studies, history)

As always, movement is a large part of our days. Pk climbed on everything he could, played Bocci, practiced rolls, handsprings, cartwheels and round-offs at home, in the park and at gymnastics. He ran, used the springboard that he co-designed and built to hurl himself 10 feet through the air onto our bed, did pull ups on his bar and practiced dance moves in the kitchen. He also rode his bike. (physical education)

Speaking of bikes – we discovered the Bike Church. Because we had a flat tire and none of us could get the stem of the inner tube to connect with the bike pump, we needed help. We spent over 2 hours at the bike church. In that time and with no prior experience, Pk took apart the wheel from the fork, pumped up the tire, disassembled, replaced and rebuilt the steering stem and the handle bars. He learned how to use a pipe wrench, a C-wrench, an Allen wrench, a Phillips head screwdriver, a vice grip, a vice and various lubricants. It was a multi-cultural and empowering experience. (science)

We went to the Gilded Lily Tattoo Parlor where the owners generously allowed Pk to trace “flash” (tattoo line ink art) and compare and contrast old school “pin up” tattoo art and newer design concepts. (art and history)

He practiced the home row on the keyboard by using an animated typing game several times. (life skills)

Math was done in the grocery store where Pk calculated the cost of fruit by using a scale and the price per pound. He used multiplication and also estimated the entire bill by using a clicking counter and rounding off the price of items as we shopped. (math)

At the library, he used the library’s system for finding and putting books on hold. He searched for books on the civil war, in preparation of an upcoming trip to Valley Forge, PA. (life skills, history)

Labels: home school unschool freeskool

I love that woman.

Labels: love lesbian family hope