V's Version

Thanks, Dad. I am pretty miserable. I'm still bleeding and changing the dressing frequently. Yuck. Very painful. Very uncomfortable.

I'm trying to cheer myself up and keep myself occupied even though I am in pain. I'm holding off on the pain meds this morning in hopes that I can take Parker out to get his Halloween costume. I wouldn't want to drive on those meds! They make me sick anyway so it's a toss up: pain or sick. Whatever. Maybe I'll feel up for making Rice Krispie skulls and decorating an altar to the Beloved Dead this afternoon.

Your hot and sticky seas seem so far away from Felton where the days are getting shorter and the sun doesn't get above the tall tree tops any more. I try to picture where you are (the African coast is so big!) I wish I had a map that could locate you. That wouldn't be so good for security now would it?

I'm including a flyer that I am printing up to give out to our neighbors. The Mormon church has put so much money into the Yes campaign and it's demoralizing. I have had to have several conversations with Parker about ethics. He wants to take down their "Yes on 8" signs - but I don't think it's a good idea. It's not fair that someone takes down our signs and I can see the attraction to retaliation. But I still have to do what is right - and that means passing their signs by without malice and just trying to get the word out about how I want to oppose the proposition.

It's a tricky line we walk with politics and religion.

Keep on keepin on and thanks for the words of encouragement - V

CNN has debunked McCain's claims. Let all small business owners who are spooked by McCain's "Joe the Plumber" image know that chances are - 98% - they will NOT be taxed.

I also hope that you (yes YOU) are doing something to be involved in this election. Dani and I spent time listening to the fine folks of New Mexico this weekend. They were tired of the confusing negative ads. They were very concerned with the economy. I talked to people who leaned toward Obama and those who leaned toward McCain. Many people claimed to be undecided but I am happy to report that not one single person said that they did not plan to vote.



I am going to make a home made low-budget flyer and go door to door asking people to please vote no on proposition 8 in California. If you read this and know anyone in CA, please email and ask them to vote against the proposition. Please do not assume that someone else has made the request. Please do not assume that they already know about it. Many people are confused by the deceptive wording and mega- dollar "Yes" campaign being funded by the Mormon church, Focus on the Family and the Knights of Columbus. They think. "Sure I think the gays can get married if they want. Yes. I'll vote yes." Eeeeek!!

In other news, the Red Sox are getting trounced and I am in some sort of funk limbo (not because of the Sox - but not really helped by the game either.) I feel strangely lonely and ineffective. Home schooling is OK but it takes almost all of my energy and patience. I try to be the good wife and the good mother and I try to do good things in the world but I continue to believe that I am lazy, not good enough and somewhat of a failure.

It feels good to write this because even as I write it, I see how ridiculous it is from a logical standpoint. I do so much. Dani, her mother, and I finished hand embroidering 40 chalice patches for the the Unitarian Universalist "Coming of Age" Kick-Off where I will be a "wisdom circle leader" for a weekend teen retreat in a couple of days. My best friend, Jennifer, and her son Kn, joined Pk, Dani and I for the 10th anniversary of Matthew Shepard's death. The Laramie Project was powerful and poignant. Today I sent a care package off to my kid sister who is dealing with some health issues in the hospital. I spent several hours yesterday with my spunky mother in law, April, after my pre-op appointment in Oakland. What more can I do?

Here is a letter I wrote to a friend this morning. It kind of sums it up so I thought I would just reprint it here:

Hey Lis - thanks for asking. It's not like I can't share or don't want to - but, you know, where do I start? It's all one continuous battle to me. The Paraneoplastic Pemphigus has ravaged (to greater and lesser degrees) all areas of soft mucosa (mouth, eyes, vaginal canal, lungs, nose.) No part of those areas of my body is completely healthy although things could be (and have been) much worse. The skin still breaks apart very easily in all areas. The eyes and the mouth are the most painful - right in the face, ya know? Always there and distracting. The treatment of the cancer ravaged my immune system & it's kind of complicated because if I try to boost the immune system, I boost the vehicle that damages the soft mucosa. so. It's a balancing act.

anyhoo - at this point, I am prone to infection and have very few ways to really fight it. I am antibiotic resistant and continue to try the alternative therapies that I can handle. I have had continuous lung and sinus infections for over a year. Probably longer but I lost track. On my most recent CTs, we saw that every available space was filled with infection in my head. My lungs don't look that good either. The oxygen exchange is not functioning properly. But I think if I can deal with the sinus infections, it might help with the lungs.

I have decided to have endoscopic maxillary sinus surgery and ethmidectomy, an endoscopic sphenidotomy and a frontal sinusotomy. All of which means that a nice doctor (recommended by Julie Wolf) is going to break my nose, straighten it out (I have a congenital defect), and then go inside to clean and pack all my sinuses over several days. mmmmm. good times. It doesn't look like a difficult procedure - just painful and exacerbated by the fact that I don't always heal well, am prone to infection and I scar in unpredictable ways. Oh - and my vanity is being tweaked because I love the way my nose looks and don't want it to change. That part is silly, I know.

So - all of this is happening on Oct 24th & the doctor has said that I am not to leave the house for a week - maybe longer. I won't be able to do much really. I dread it. You know me. So by the 1st, I might just well be ready to get out of Dodge & go to Berkeley! We shall see.

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So I hope that keeps y'all up to date.

---Home---

I'm catching up on SNL skits (Tina Fey - gotta love her) and on conservative Kathleen Parker's call for Mrs. Palin to step down from the Republican ticket while I anxiously await the VP "debate" tonight. I've also learned about today's new specs on the Senate version of the "bailout" bill (that includes tax exemptions for manufacturers of wooden arrows used by children among other such NONSENSE). But that is all political. The politicians and policies will (eventually) touch me down here on Pain Street but, for now, I can put them aside for more pressing personal issues. Like health and personal finance.

I am especially inspired by the PF blog Savings Not Shoes. I've spent the last year learning about personal finance and the last day reading and compiling everything I learned about personal finances and how it relates to us specifically. (The Motley Fools were my favorite big name site.) Value funds, index funds, Small, Medium and Large Caps, asset allocation, mutual funds and and money markets - I understand them all now. You see, Dani and I had a blow out exchange last week that left us each shaking in our respective corners. It began with a casual statement stemming from my fear of the volatile stock market and ended with me in a puddle of drool and mucus, clinging to the back of the kitchen chair and wondering if NVC was ever going to kick in automatically when the stakes are high.

It was not pretty. Not pretty at all. If you read here regularly, you know how much love we have in our family so fear not - it's all still there. We are made stronger with the challenges. If there is anything that motivates me - it's learning. I am learning how to keep harmony in our house AND how to face financial concepts that used to baffle me.

And speaking of baffling - my health continues the twists and turns of the craziest roller coaster. How I remain as pleasant as I am as often as I do is a COMPLETE mystery. The pain - well - you've heard it all. It sucks. My head is completely FULL of infection. Every cavity is filled. I just scheduled the surgery - with the complicated pre- and post-op appointments and testing and Image guided CT scans. I am going to be spending a LOT of time in Oakland. sigh. More will be revealed.

Thanks for all the good thoughts out there. I need it. But probably my family does too as they are the ones who have to deal with me and help me through it all. I feel like sleeping all the time and just hiding from everything.