V's Version

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Current Mood: accomplished
Current Music: Kasey Chambers, Wayward Angel
This is a journal entry - it is unabashedly personal & from my point of view. To every story there are many versions. This is mine and if you want to ask anybody else about their version, go right ahead.

I don't know what you know and what you don't. So if I am repeating myself - forgive me. I also will try to condense what is not a short tale.

My cancer was diagnosed in December of 2002 although the symptoms began years earlier. The diagnosis of a rare disease called para neoplastic Pemphigus (PNP) in the spring of 2003 was practically a death sentence. There are no known documented cases of people living past two years. I am coming up on two years and am stronger now than ever. The fight has been long and hard and continues. My attitude at the moment is one of pure joy to be alive. I am acutely aware of my blessings because I have come so close to dying so many times. I much prefer this lightness of being and my re-emerging self than the fear and anger and desperation that accompanied the early fight with cancer and PNP and the changes that followed. Having my skin fall off, not being able to eat much for almost two years, vomiting daily - you know it takes it's toll. And then there was the divorce.

When my partner since 1989 announced that we would be divorced last year, I couldn't see much reason to live. Except our son and that tiny spark of life in me that stayed lit like a damn pilot light in a tempest. It was bad. She had been my rock during the god-awful hell of the disease (keeping my skin from disintegrating, hydrating me at home, feeding me, bringing me buckets and blankets and meds and shakes.) She was my hero, my angel, my wife through hard times and happy times. Actually she said that it wasn't a divorce - it was a transition to a new kind of relationship. She would still care for me, she would be everything she had promised in our wedding vows except be my lover. I didn't understand why we couldn't work on the communication problems that existed and I tried my very best to be supportive of her new relationship. I wanted her to be happy. I wanted to be happy. But I was utterly heartbroken and confused. I was still deeply in love. My pain was compounded by the fact that i could not speak in our community about what was happening because it could jeopardize her job. I didn't keep that boundary as well as I should have (I told one person everything the day after I was told. In my grief, I completely forgot that she was connected to the job. I regret that. I also wrote a post on an internet bulletin board that stayed up for a few hours or so before I erased it. Those were the biggest blunders but there were others.) Anyway - I am not a very private person. I don't keep secrets about my own life, never have. The balancing act of keeping her life private (a valid desire) and being able to express my intense grief was not possible. I felt gagged and went to friends and family far away for most of my support. And, locally, I put on my happy mask and made pretend that everything was OK. I was "just fine" with the "transition." That coupled with the fear regarding my health made it a profoundly difficult time. I was so sick - bedridden mostly. Not able to do stuff (like drive or do housework or be a primary parent or walk sometimes) on my own. I didn't know how to survive so I kept breathing as best I could.

We bought a 4 BR house (with help from her job so everything is in her name) a few miles away from the home we had been in for six years. We first began house hunting before the divorce-not-divorce. It was me who kept saying we can't afford this. It's too much but she said no, we can do it. By the time a house was finally available, it was she who was saying no, she didn't want it. I knew my ex's new partner would be moving in soon and hoped that it would alleviate the palpable anger that surrounded our homelife. I just wanted us all to be happy. I desperately wanted our 7 year old to retain stability as much as possible. And I was well aware that I could not fend for myself. Our old house was too small for 3 adults and a child so we moved.

Two months later, in May of 2004, I was given three days to live. I had had a pulmonary embolism (blood clot in lungs) and an infection that had gone septic. It didn't look good at all. I had to say goodbye to our son every time I felt sleepy because the doctor said I would most likely go into a coma and just not come out. My family all came to say goodbye. We got the coffin and I wrote cards for my boy's birthdays until he turned 18. It was hell. I mean not the same hell as having my skin fall off (the joy of PNP) and having burnt lips and lesions everywhere but a psychic hell nonetheless.

Obviously, the tide turned and I lived but my ex was done with the roller coaster and while my family gathered around with a social worker, she suggested that I go back to New England with them. She wouldn't characterize as kicking me out but it certainly felt like that at the time. I was told to leave with the vague notion that I might be able to return (an offer that was never repeated.) The house was not in my name. She couldn't leave me the house (she said she would have if only the money weren't tied to her job) but she could have let me stay until I found something else. She could have found me a place (remember I was in no shape to go interviewing!). She could have moved out temporarily until I found a place. None of that happened. So, the reality was that I had no choice but to let my family take me to New England. Not much changed there in May or June or July into August. I was in and out of the hospital. I could definitely not do most things on my own - not even get dressed. And the daily vomitting continued so I was very weak and malnourished (with much weight loss.) I was cared for and loved by family and friends in New England but I knew I couldn't stay there. The winters would be too harsh. The medical care was archaic. Our son needed his other parent and his normal life of church and school and friends and familiar geography. I was weak but determined.

I was blessed to be with a longtime festival friend, Scout, and his partner, Susanna. They cared for me and for the rugrat. They have three kids of their own so it just added to the mayhem. One day, I looked in the mirror. It was my first venture in quite a while to try to take a bath alone. There was a full length mirror. I was so terribly thin - I could see my bones. 130 pounds was gone and I was in shock. I don't know what happened. It was a turning point. I felt hungry for the first time in recent memory. I managed to drink milk shakes and rice with butter and wanted more (Susanna is a really good cook.) I miraculously stopped throwing up and decided to quit all the damn medications. If I was going to make it, I was going to make it and if I wasn't, well I wanted a better quality of life.

I made the gutsy move to come back to CA. Homeless, with only my insanely small disability check and the generosity of friends to try to sustain the two of us, I came back. It was a desperate time - looking for housing - not knowing where we would land. Not being able to tell anybody very much because of the whole privacy thing in our community. I understand the concept and tried to adhere to my ex's wishes but it wasn't easy. Luckily, I was able to find a suitable home in not too much time. Actually, having lived here for a couple of months, I can easily say that it is more than suitable. It is perfect.

Having the housing piece out of the way (people wanted to know why I couldn't live in the house as we had planned. What could I say?), the next major privacy piece was keeping the secret that my ex was becoming a man. He decided to transition genders sometime over the summer (well - as with most transgendered folks, I am sure it was a long time coming) and I couldn't tell our son, even though I thought he should know as soon as possible to start taking it all in. It's a lot of change for anyone, especially a kid. As a mother, I feel obligated to help him with all of the changes. I couldn't tell most of our friends or anyone in our community. I couldn't easily process my own sadness. Not that I am sad that he is transitioning - I am very happy for him. But the sadness that it couldn't have happened while we were together. That's easing up a little now as time goes by. And now the transition is so obvious, our community will know soon. Our son knows, friends know. He's also putting it out publically (on the internet) that he is male identified so that's cool. I look forward to being able to support him in a more public way in our local community. I just don't hold my cards so close to my chest.

We are still in mediation over financial stuff. I think we are both doing the best that we can. We do not see eye to eye on support issues but have both been willing to make major compromises. He has agreed to pay for my insurance premiums (for which I am unbelievably grateful because I am completely uninsurable with private insurance if I should lose this coverage), our son's medical & dental and part of what the state says he legally has to pay in child support. We both wanted to stay out of court so we could agree on whatever we wanted. And I really don't like to fight so - I am feeling a mix of gratitude for what has been offered and anger that it is so much different than if we were hets. It's a little crazy that we both vocally support equal rights for gays to marry. And yet when it has comes down to what the state says he should be doing for support and division of assets and debt, he says it isn't possible. If we had been straight when we were married all those years that I was a housewife and mother, actively supporting her in her job, the state would find a way to make it possible. The consumer debt would be divided equally (I have the lion's share of it), we would split the house, the retirement fund, I would get social security benefits if I ever lived to be old. As a home maker, there is a court ordered formula for compensation for years of service. But here in CA the domestic partnership laws do not have the same legal rights as hets until January 2005. I guess the divorce (for that is what it is) happened at just the right time for one of us.

I haven't figured that one out yet. I am really peeved that someone who proclaims to hold such high ethical ideals can act in a way that seems so hypocritical. I'm open to the idea that I am in pain and I am wrong. Maybe I am missing something. But if you cry out in public for equal rights and then say something else behind closed doors (where most people will never hear of it) - it seems? What is the word? Wrong.

I have our son all but 8 days a month. It's hard, as a mother, to watch this process. The divorce is very hard on the little guy. But, luckily, where we live is so fun and beautiful. School is going well and there are playdates galore. I can drive for the time being and have the energy to be a really good mother. We laugh a lot and I cherish every moment that I have. He is relieved to see me gaining strength. He probably doesn't trust that I'll be around for a long time and he's probably right to have that attitude. My chances statistically aren't good.

But for now, I am riding my wave of energy. I am thoroughly enjoying life. I have had different attitudes over the last year. And I use the lemons as a metaphore (as in: "When life gives you lemons, make lemonade.") I have gone from "Oh yeah? Well YOU make lemonade from lemons if you are so fucking fond of it!" to "HOW can I make lemonade with no SUGAR??" to "Damn! Lemonade is soooo refreshing! I just LOVE lemonade!"

It's been quite a ride.

I'm still off most meds, refuse chemo despite the fact that I am nowhere near remission. I take a pooled blood product called IVIG to keep the lesions under control.. At $10,000 a day for the treatment, I am eternally grateful for that private insurance. I have to come up with the $6000 out-of-pocket deductible but it's worth it. My mouth is doing pretty darn good and my eyes hurt worse than I could ever describe. Horrible. The disease is eating the skin around my eyes. I guess I figure attitude is everything and if I can go to the hell I have experienced and make it through to this glorious place where I am today - how could I be anything but grateful?

Why I am still alive: My raison d'etre (my son), the incredible support of my various communities, the fact that I started off at 250 pounds (fat chicks rule!), my intense love of life and my kickass spirit.

So - that's as brief as I could get. Any questions?! Ha!