V's Version

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.