Wednesday, October 21, 2009

Riding the Bipolar Roller Coaster part II

It's been a long time, in bipolar terms, since I experienced a real depressive episode. But I remember all too well that depression sometimes presents as organic illness. I start to feel sick. Feeling sick is not my normal state. This feeling sick sends me to my internist. And in the early phase I might have some mild and transient bug that can either be treated or waited out. But I don't bounce back. Feeling ill lingers. Not sick enough to simply stay in bed, but not well enough to want to do much of anything. It's a headache that's hard to get rid of, or a bowel disturbance, or low grade fever, or a slow, creeping stupidity that scares me more than anything. It's the transitions from one pole to the other that are the most dangerous. It's when we, the bipolar, realize depression is bearing down on us and we still have the energy to do something about it, that we know we can't stand it again. That's when we think about suicide. If I were suicidal, I would not be talking about it, so relax. I'm not suicidal at the moment. But I have been there many times. It's why I don't fear death by cancer or heart disease or a fatal car accident.

In Salt Lake, under the umbrella of Medicare, we have Valley Mental Health. And within Valley Mental Health is a group called The Master's Program. You have to be bipolar and over fifty to qualify. I think calling a program for the old bipolar patients "The Masters Program" is both funny and apt. If you've lived past fifty and you are bipolar, you're damn special. You have survived a very difficult life. And I'm always amazed how many of us there are. We are often treated for substance abuse(self medicating) which might result in a bit of trouble with the law, especially for men. Men are more likely to be incarcerated than women, since men are more likely to be violent against others, whereas women are more likely to be self destructive.

We can be extremely charming, and we can be horrid. I would not choose a bipolar friend to hang around with. In my opinion many of us are more trouble than we're worth. In transition we can be seething with barely suppressed rage. In a manic phase we can seem as if we're taking large doses of amphetamines--motor-mouthed and loud. I sure wouldn't choose to spend my time with anyone like me. But for the person experiencing a bit of mania it's damn fun. We all live for the hypomanic phase of the illness. But, like the way down, the way up is also dangerous.

I have over the course of my life dealing with this monster illness found that not that many of the drugs to control my illness are tolerable to me. They all have some side effects, most commonly weight gain, which makes it hard for a lot of women to stay with on them. And some side effects are worse than others. One drug gives you tremors and one drug makes you fat, one drug makes you stupid and one drug steals your dreams. Go ask Alice. I'm guessing she was bipolar.

There are bipolar drugs I am frankly afraid of. I know that if the constellation of side effects is both weight gain and an inability to create I will not take the drug. I can tollerate the weight gain but not the inability to write. And like all medications not all people react the same way to the same drug. The drugs I hate the most are those used to treat mania. In the first place mania is fun and you have enough energy to clean your house, do the laundry, carry on loud long conversations while you bake a cake and paint the ceiling red. Most of the really hard outdoor work done on this piece of property, was done by me working round the clock making stone pathways and patios in the middle of the night with outside lights on.

The dangers of mania are an expansiveness that makes casual sex easy and fun, it makes shopping sprees with a new credit card seem like the best of ideas. It makes an already mercurial personality, capable of inflicting whiplash injury to loved ones with the harsh word and the hot temper more intensely painful to those close to you. Tears flow easily. You feel everything more intensely, like you were on a great high. But the drugs to bring you back to earth are harsh. The are deadening. I've had a major psychosis which is the real danger of uncontrolled mania. It takes at least a two week hospitalization in a psych ward to get that under control. And the drugs to stop the hallucinations left me feeling lobotomized. I remembered nothing much, not even my way home. I lost my way within a few blocks of my house. And I had tremors that were so bad I had trouble drinking coffee. To my friends, my affect was pretty flat. But I've lived to tell you about the dangers of the journey.

If you have one family member with bipolar disorder, chances are there have been many others in your genetic pool. I was doubly cursed in that both my mother and father were bipolar. This is an illness with two genetic markers, not the usual one. So it's a mighty potent gene.

My father was diagnosed with schizophrenia in the late 1940s. I'm told by my psychiatrist that most bipolar patients were diagnosed schizophrenic in those days. He was hospitalized twice that I know of. I knew him as a rage-aholic. He was mean and abusive to me and my mother. Maggy, my mother, was the more manic type of bipolar personality. She always saw my depression and tendency to isolate as being lazy and too sensitive. She would never admit that there was anything wrong with her. She was critical and disapproving of almost everyone else but especially me. She was known to her siblings as the mean one in her family, bordering on sadistic. She was the classic narcissist. She was perfect and everybody else was fucked. Life in my home was hell for me. And I was given the advise by three separate therapists to vanish and never contact her again, to move and leave no forwarding address. But she was my first unrequited love. I never was good enough for her but I kept trying like a woman in an abusive marriage.

Z's Cancer Has Spread

It was on my birthday, June 12th, that we found out Z's diagnosis of small cell squamous lung cancer. It was not inside her lungs but still it was devastating. And it was a late diagnosis since Z doesn't trust or believe in Western medicine. She is a practitioner of alternate modalities (her words not mine). And yet after a while of thinking she could battle this cancer with juice fasts and magic water (my term not hers) the tumor was pressing on her superior vena cava, making it hard to swallow, breathe, talk. It was getting worse fast. Her daughter came and put so many things in order, and it was her influence and research that put Z in touch with the best pulmonary oncologist in Utah at Huntsman Cancer Institute. She got the best pulmonary radiation doctor in Utah. And Z hated every second of her care. I was never allowed to accompany her to any of her appointments despite asking. So I gave her rides to and from her early treatments which she reluctantly agreed to. I helped her put her clean her closets so Z's youngest son and his partner and her son and their son could move in and care for her. They were given the full house and Z was moved out of her bedroom and into the small basement room where it would be cool and quiet. Then I had to butt out, since her kids caring for her meant a great deal to her. I felt their care was not only inadequate, but worse, it created more work for her and very little nurturing care from them. She called me to bring my little French vacuum over to vacuum her bedroom in the basement, crowded with the washer and dryer, piles of dirty clothes, their vacuum and anything else the young woman partnered with Z's son didn't want in the upstairs. I cooked her favorite things and took her anything she craved but I got harder for her to swallow. And all the time I wondered what her son and his partner were doing to help her. The young woman did not work out of the home, but stayed home with her toddler and baby all day. But she never seemed to do much for Z. One day I called to find Z cleaning the fridge. I was seething with rage. She was too sick to be doing anything but getting waited on, fed things that sounded good to her, kept clean and quiet. But any critical comments about her son and his lazy (my word) girl friend and the lack of care, the absence of nurturing they exhibit towards Z makes her jump to their defense. They're sick, they're busy, they're tired. Frankly I don't give a shit what their excuses have been for not shopping, cooking, serving, cleaning up after and around Z. They live in her house rent free to make it easy on them to take care of Z. They have been awful at taking care of Z.

It was months before she told me what stage her cancer was. Stage three. Dire, but not yet matasticized. Her prognosis was 30% chance for a good outcome with aggressive chemo and radiation. She balked and tried to find a way around it. She hated her doctors and claimed the only reason they treated cancer was the big bucks. She said her treatment would buy a new set of golf clubs for her oncologist. I have a close friend who works as a researcher at Huntsman and asked her to check this doctor out. Her report to me was that he was a very good doctor. Not the best bedside manner, but top notch skills. He is the best pulmonary oncologist in this part of the country. But Z could not be convinced that he was not a charlatan.

In the time since June 12th she has had pulmonary embolisms, severe pain in her hips and shoulders, pneumonia, and the pain from radiation burns as they tried to get the tumor to shrink back from her vena cava so she could breathe and swallow. At every turn in this journey there wasn't a day she wasn't pissed off at the doctors and technicians who administered her radiation and chemo. She kept looking for a "natural" cure for her cancer. When her hair started falling out she wanted to stop chemo. She was sure they were going to kill her with the chemo. They didn't understand that she was too "pure" for this level of chemo. She'd been a vegetarian for over 30 years. Her system wasn't like other peoples, she kept insisting. She was furious that her oncologist didn't acknowledge her slight weight as a reason to back off the chemo. Z is 5'8" and weighed 115 when the treatment started. She's now probably 95lbs, if that.

Z got through the first round of radiation and chemo and had a couple of weeks to recover some strength. Then her doctor ordered another round of chemo. She had one treatment and then refused to continue until they did another PET scan to see how much the cancer had shrunk. She got the results yesterday. Her cancer is now in her liver, spleen, and lungs. The original tumor, which was "lung cancer" wasn't actually in her lungs. It was outside the lung and pressing on her airways. That tumor had shrunk some, but the cancer had matasticized. Now she's no longer willing to receive any more Western medical treatment. They offered to give her hospice care. And this offer of hospice is to her a confirmation that Western medicine has failed her.

Before she got the results from the PET scan, she'd found the cure she'd been looking for. It's hash oil. She found a site on the internet that promises to cure lung cancer with the use of hash oil. To my way of thinking anything that gives her hope or makes her feel better is a good thing. She says she's leaving Friday for Southern California where her two oldest sons live. I wanted to get her a first class ticket on a plane, but she wants to have her car with her. So her brother is driving her to Southern Utah where she'll spend the night. Then she plans to drive herself to Las Vegas to meet up with her middle son. He'll fly in to Las Vegas to drive her the rest of the way to San Diego. Her oldest son and his wife and twin daughters live close to the beach in San Diego.

Z is my oldest, closest friend. We met at seventeen as early admissions students at the U of Utah. We were the first early admissions students the University accepted and the only girls in that first group of six. We were as different as it's possible to be. But for some reason the friendship grew and though we have spent years living in different parts of the country, married, divorced, and out of touch, whenever we did see each other the old friendship was just like it always was. She is my Executor, has medical power of attorney for me. We never thought I would outlive her. I'm bipolar and have what used to be called Malignant Hypertension. The leading cause of death for people with severe bipolar disorder is suicide. I wasn't expected to live this long. Now it looks like I will survive her. How strange is the landscape of my life without her in it.