Tara's Surventures in Wonderland

The Afterdeath

2009-02-16T11:37:00.000-08:00

I just looked back over entries from the last couple of years and am left with a very odd feeling. I thought somehow that when I wasn't dealing with my mother's pain, watching her become frighteningly thin with a distended belly like a starving child, wasting from the cancer, her hair gone, her once perfect teeth destroyed and rotting, putting morphine drops into her mouth, lifting her with my husband to clean her, and so on, I would, despite the obvious grief, feel some relief. Yet I don't. I feel much more unhappy now than I did through those two years of physical horror. I miss her so much it's unbearable and now I have the time to actually feel the feeling. Without her, the world feels empty to me. It feels devoid of meaning. She was my soul mate, for lack of a better term. I am deserted.
There is another, subtler aspect. When I was looking after my mother, I had a clear purpose. We were aiming for health and for survival. Each day of survival was a triumph. I didn't think long-term because I couldn't see beyond the day or week. I had no time to myself, no time to think. I would say the main reason I wrote this blog, which I really don't care if anyone reads or not, was because it created a reflection for me in a way that a diary would, yet somehow doesn't. Now I look at my life, the one that I have without her, and I see no clear purpose. I have to create one. I don't feel strong anymore, I feel incredibly small and weak. Smaller and weaker than I can remember ever feeling. It's a little bit like being an adolescent again except that I know better.....I know there are other ways of feeling. Also, when I turn my eyes away for a moment a pile of responsibilities (papers to sign, calls to return, bills to pay, etc.) accumulates so there isn't much room for teen angst.

New Drugs, New Hope?

2008-04-17T19:32:00.000-07:00

It's been a long time since I last wrote. So much has happened, I can't possibly summarize. So I'll just write. Every time I go to the hospital with my mother, the doctors start talking to me about death. I had to bring my mother to the emergency room because she was septic about three weeks ago ago the ER doctor started talking to me about how her father just died of brain cancer. I just spewed tears and I don't see how, in that vulnerable and uncomfortable context, that was helpful.
At my mother's appointment her oncologist tells us it's going to get harder. We know hard. We don't care about hard, we just want good treatment. I feel like my mother has been tossed around because of bad insurance, because of her helplessness, because of I don't know what. I imagine where she could be right now if her care had been thought-out and organized from the beginning. Instead, she's been diagnosed so late, thrown around from doctor to doctor, and I don't even understand what the treatment protocol that we're doing means at this point. I watch her pulling away again and again from the brink of death and so much of it is unnecessary and preventable. The oncologist tells me she has six months to live. Two years ago in May her first oncologist told me eight years. I thought that was too little time. What happened?
The tumors in her cerebellum (the motor cortex of the brain) are growing again. She's had so much brain radiation that, although she responds well to it, they can't do any more. It's too protected by bone and there are too many tumors to do gamma knife or other surgery. So, she's switching to a new, slightly stronger, chemotherapy. This drug's called Irinotecan. It's normally used to treat colon cancer and I'm not sure how it works with inflammatory breast cancer. We were given a number of options, most of which we've already tried (like Xeloda, which caused unbearable vomiting and nausea, or Tykerb, which gave my mother six months of severe diarrhea and three weeks in the hospital, one ER visit). I feel helpless. We both feel like the oncologist would just like to get rid of us and not have do deal with our questions anymore or my mother's difficult case. I feel like everyone around me is giving up on her. But why? She's not in terrible pain, the intestinal problems were finally solved after we arranged for her to get a unit of gamma globulin, she's eating, she's smart, she's funny, her skin is still way better than mine.....And equally important, I spoke to a woman in Texas a few days ago who had the same disease and was following a similar protocol. Her heart began to fail from the Herceptin (trastazumab) and so she was told they had done everything they could do for her and she should go home and sort out her affairs (i.e. die). She went home and tried every alternative treatment she could find and, somehow, she went into remission and has been alright for at least 5 years. I was told that there was no chance of my mother going into remission and that her early death was imminent. No doctor ever gave me any hope for remission. I kept some sort of faith that we would find a way to live with this somehow, but now that faith has some support from outside----a concrete contradiction of all that I've been told by the doctors.
How am I supposed to trust the doctors to do everything they can for my mother when they don't believe that she'll live more than six months? Where else is there to turn? The alternative community is not offering me any answers either. My mother was going to an alternative oncologist when she ended up with over thirty brain tumors and no one even knew until I brought her into the emergency room on the brink of death because they just don't do MRIs. Oh, and the alternative treatments cost us $1,500 a week and are not covered by insurance, of course.
My mother, who has helped so many others with their health, doesn't seem interested in her own treatment. When it first happened, she wouldn't even look at the MRI slides of her spine, where the first metastases were discovered. She would go blank in the doctors' offices. So I've been trying to learn about everything and defend her in this confusing world where the patient needs to somehow make sure that they get thorough care. My mother says she just wants to be with me. She doesn't want to go to a clinic or to hang out somewhere pristine and beautiful, she doesn't want anything other than to be home with me. Somehow, I have to make sure she gets the best care she can get, it's just overwhelming. I've learned a new vocabulary and grammar. Just like I studied languages, now I listen to the doctors and the nurses, I store every new word and remember its meaning. I've learned the language convincingly enough that new doctors we encounter always ask whether I'm a medical student. However, it is still a foreign language; on Tuesday I finally learned what a PET scan actually means.
I feel a pressure suddenly as I realize that no one is going to do it for me. Because I love her, I have to figure out a way to defend her against this invisible and lethal monster.

Compression

2007-09-01T05:44:00.000-07:00

I find myself surprisingly unperturbed.
It may not have hit me yet, sometimes it takes a little while.
Things have been much better and I have begun to work on expansion, rather than constant contraction. But as soon as I begin to get a little bit comfortable, along comes the next challenge. So, yesterday my mother came home from her PET scan---I did not accompany her because I got a slight cold over last weekend and I'm still fighting it off---and told me that it showed she now has spinal cord compression (tumors pressing into her spinal cord). Up until now, despite the total collapse of her spine, she was alright in this regard. Now, of course, she is in a very risky situation; her oncologist wanted to admit her to the hospital right away so that they could keep an eye on her and do lots more tests. However, she said she would rather be at home where at least she feels comfortable and happy. There isn't actually anything that they can do for her in the hospital at the moment other than monitoring her. It basically makes their job easier, but wouldn't actually help my mother in any tangible way. She will probably have to undergo another series of radiation treatments. This will be the second in a matter of a couple of months. Just recently they radiated the breast and the hip for a month and she just recovered from those daily treatments. Before that it was the brain for three weeks. Now it will be the spine itself. The upside is that she has historically responded well to radiation (i.e. the tumors have shrunk) and the side effects are relatively minor compared with what they could be.
One thing that truly upsets me is that my mother gets so scared that I'm going to leave her. I feel like she should know by now (it's been about 21 months) that there's no way I would give up on her, ever. I was planning a trip to Europe, to the Czech Republic and the UK, to meet the family I have but did not know existed. I was told that the Nazis had wiped them all out, which is what my family believed until this other branch found us in the National Archives. She was saying to me this morning that she was afraid of me leaving. Perhaps this is on some level why this keeps on happening. Perhaps she has to learn that I love her so much that there's no way in hell I would ever leave her if she felt uncomfortable with it. I wonder when she'll understand that?
I look at her and I see a baby. I would never leave a baby and so I would never leave her. Only when the baby truly is capable of looking after itself would I begin to let go. So there it is. I can't help it, when I look at her little face I see a baby who needs me. I used to have a lot of nightmares when I was a teenager that I had given birth to an underweight baby and I still wanted to party and hang out with my friends and I had no idea how to look after it. The dream wasn't always exactly the same, sometimes the baby was dead in its crib like the baby in Trainspotting, sometimes it was in my arms and it was very frail and looked up into my eyes beseechingly as I put it down. It would look up at me from this tiny pinched baby face and meagre body with wise, knowing eyes. Sometimes I could smell its breath, a rotting, malnourished smell and I would wake up gagging.
In Gestalt Psychotherapy, which my mother trained in for three years when I was----you guessed it----a baby, you enter your dream and see each part of it as your own self. So I would act out the part of the baby and the teenage mother. I would go into each part and speak as the voice of the 'character'. I've worked on this dream in this way and I can certainly see myself in both roles. In fact, the eyes of the baby look a lot like my own did. I was not nearly so emaciated, but there was a lot of deprivation in my childhood. My mother was working like a maniac when I was an infant and during her pregnancy because my father was not making a living and she was also physically frightened of him, so she wanted to be out of the home as much as possible. I had some wonderful babysitters, mostly lesbians and models. The former would take me to parties and museums and the latter would bring me to castings and such and let me play with their makeup. But there were also some awful places. I remember this one daycare I went to in an Indian family's house where there were a lot of children who were mostly older than me and played rough. No one would actually watch us. I mostly stared at the fish in the aquarium, which gave me hours of fascination and kept me out of their way because they were all glued to the TV. However, I remember once one of the older girls who had long nails poked my eye and I got an eye infection. I don't know what it was about, I just remember how frightening that place was. Also, our house was way below legal sanitary living standards. We lived in a basement and sub-basement and it was full of rats and ghosts, with whom I frequently interacted. The outside of the building was covered in crackheads in various states of disrepair. They knew who we were and I had frequent interaction with them, too. Mostly fine, but once one of them pulled a knife out on me and told me he was going to "Get the bitch outta me"(he didn't manage that one!), which was almost as bad as getting my eye poked with those nasty long nails. Anyway, the point of all this is not very clear, it's more of a rant than anything else, but I would like to make it clear that I'm not upset about any of it. I take it all as the pieces that have made up who I am and I'm constantly working at overcoming the grime and there is an awful lot of it around, let's face it. I'm happy with where I am and I'm happy to be able to face all of this nasty stuff that's going on in my mother's body and love her more and more every day. I want to make sure that I would not leave that baby under any circumstances, no matter how scared I was for my own survival. That baby is inextricably a part of me.

Radiation Termination

2007-07-19T19:09:00.001-07:00

Since I last wrote, which is quite a while ago, my mother has had to undergo a month of radiation to her breast and left hip. Because of the infection she had in her blood from the port the chemo is administered through, she was unable to receive any chemo for about a month while she was on antibiotics. When this type of cancer (stage four inflammatory breast cancer/ carcinoma) is not treated continuously, new growths and damage to healthy tissue can occur throughout any part of the body, hard or soft tissue (e.g. the brain and the bones, the breast and the hip). Because this happened, my mother needed to be treated with more aggressive means than the relatively mild cocktail of Herceptin and Navelbine that she receives as weekly preventive chemotherapy. The least painful way of dealing with the problem was radiation, so she had a daily dose for about a month. She was luckily able to go to the hospital by herself every morning because she is much stronger now than she has been for many months. I held down the fort.
Now we're back to just the chemo and will be going into the hospital tomorrow, as it's Friday.
Otherwise, I've begun teaching yoga classes, which I'm really enjoying. I would like to do more. I've been learning so much about people and the ways in which they learn, and also how to just let go of my own ideas about how something is or should be.
I had an interesting conversation with a client today, who happens to be a devout Christian. He mentioned to me how happy he was that I was able to see the opportunity within the challenges that I have faced in recent months and continue to face. It was so wonderful to actually hear someone acknowledge that aspect of this whole surventure. Yes, it has been tough, definitely the toughest time of my life and there have been some others that were pretty tough themselves but don't touch this. My whole world as I knew it is destroyed as far as I'm concerned. Yet, in its place, I've found much more happiness. I can't really imagine what it was like to live inside the skin that I did for so many years now that it has been ripped off of me. I find myself exposed to my own self and I'm able to look myself in the eyes and trust that person looking back at me.
I've realized that I can't live my life based on someone else's idea of what a 'decent' life is supposed to be. I have to pursue what genuinely makes me happy rather than what conventional wisdom states. It sounds trite, however so much of my life in recent years has been based around conforming to some sort of ideal. I have no regrets about it and I'm sure I learned a great deal, but something has profoundly shifted. I've spent the years from about 14-22 conforming in subtle ways. Wearing jeans, doing SAT IIs and APs, teaching English, drinking wine with dinner, going to college, and so on. It's not that there's anything wrong with any of these things and I'm really glad I did them, it's just that many of them were done with the specific intention of going to an imaginary place. The exams had nothing to do with what I want to be learning about. They were hoops and then more hoops. It was a rude awakening to be pulled out of that lull, that safety. But I feel like a fish that's been flung back into the rushing stream.
The line between good and bad in life has changed for me. What appears to be a catastrophe can bring new life. Destruction seems to be the natural partner for creation. It all is making up this layered painting; the new experiences are painted over the old, one coloring the next and it all just looks so beautiful to me. The tragic and the joyous mix together, harmonizing. I want it all. I want to get my hands muddy.
I still feel embryonic, though. I can feel that much bigger shifts are in the making, I can feel my viscera preparing for something I can't quite touch yet.

Ah, routine once more!

2007-06-06T18:56:00.000-07:00

Life has settled much more into a routine, which feels wonderful. My mother's hair is growing back, we're working together most of the time, and everything feels stable for the time being. It feels a little like when you come home after a long and adventurous trip. Everything at home feels at once renewed and comfortable.
I know that new chapters are coming ahead that will be full of all sorts of unforeseen challenges/blessings, but at this very moment I'm enjoying the comfort of home. I'm working out some of the things I neglected during crisis mode. I'm sorting out my basic needs, like getting myself some health insurance. I sent in all the paperwork and I'm just waiting for everything to go through the mill smoothly. I also went to the eye doctor, who does eye exercises with me because I have a convergence deficiency, whom I hadn't seen in two years!
This weekend is the last weekend of my yoga teacher training, which has been an amazing part of my life for the past six months. I've made friends and had a sense of community that I never quite had before in this metropolis of glimpsed faces. I hope that we will all stay in contact with each other and continue to provide that sense of community. I've been working on a quite extensive take-home test and three essays to wrap up my course.
Needless to say, I've only just begun my studies. I'm debating what the next step will be. There's a Kundalini Solstice gathering in New Mexico which I would really like to go to if it weren't so far away. These days I've been wanting to stay close to home and really get to know what's in my own back garden, so to speak. Travelling feels like a drug to me, in a way. It's this intense experience that's disconnected from the rest of my life, my own homeostasis, and it has its own side effects, jet lag being an obvious one. In the same way that I see the value of hallucinogenic or "mind-expanding" drugs when used in the proper context and with care, I see the value of certain types of travel, certainly. But I also feel like it's something I personally have overused for stimulation. Just like when you eat simply, you can appreciate subtleties of taste, I'm finding that as I stay in one place, I begin to appreciate the subtleties around me and feel more connected to the experience of my environment. I'm wanting to explore the climate that I find myself in, the Northeast, not because it's superior to any other, but simply because it's where I am. I'm wanting to see if there is something going on right here, on my own turf. In a way it's harder because it's so much simpler. I bet there are lots of things going on around the corner but because they are around the corner I'm tempted to just stay home. It's easier in a way when I have to search it out and plan and get on a plane, just like it's easier to pop a substance in my mouth, even if the substance is hard to come by, than it is to have the same sort of expanded consciousness through the tools that exist within my own body-mind. They're right there in my own mind, in the same way that the City and it's environs contain enough stimulation for many lifetimes.
Another way of understanding this concept is looking at the way that ascetic yogis or monks cloister themselves from everyday stimulation in order to be able to achieve a different state of consciousness or awareness. It is the way the brain works, it can only take in so many stimuli at one. We do not see everything that goes on, we would not be able to handle that much stimulation. So as we limit one particular stimulus, we make room for consciousness of another.
A similar thing has happened to me in my own physical practice. Since I was about sixteen, I've been going to the gym and using weight and cardio machines. I also did different forms of hatha yoga, but I always relied on other types of physical training. In the last two months or so, I've not wanted to go to the gym and instead I've been doing two to three hours of yoga in the morning, including mediation and breathwork. I'm finding that I'm much more aware of the suble strenght of my own body and it's beginning to really feel like one connected piece, rather than some parts being more developed and 'separated' from others. I imagine this is because I'm never working with anything in conscious isolation. Isolation is an illusion, of course, because everything in our body is connected to everything else or else we would not function as a body. When I used weights, I mentally separated one movement from another, even though intellectually I understood that this was an impossibility. It's one thing to understand something and another entirely to actually feel it. Now I can feel my body beginning to flow. I can feel how my toes touching the ground affect my neck and my skull and even the contents of my skull. Amazingly, although I'm not doing strength training per se, my muscle tone actually feels better and more integrated and although I'm not really doing heavy cardiovascular activity like I was before, I'm never short of breath. The other day I noticed it for the first time as I was walking up five flights of stairs. I felt not even the least bit winded and I wouldn't have even noticed it except that there were some physically fit looking guys in their early twenties behind me and they were huffing and puffing. I was shocked.
I've been going back to really simple poses and getting deep into them. Instead of always challenging myself on the gross level, I've been moving into subtler levels and uncovering layers and layers of tension around the muscle attachments that I never got into before because it takes time. I'm flexible on a superficial level, but the tension stored in the deeper layers, which take time to access, is intense. I feel like the complex postures are a little bit like drugs, again. Sometimes just as much can be gained by just standing in tadasana for an hour and becoming aware of every part of the body, the breath and the mind as could be gained from a class with vinyasa, meditation, pranayama, and all sorts of complex postures and kriyas. I would have thought that as I learned more I would want to have more complexity, but I'm finding myself sticking to basics. I feel like there will be a time when the complex will seem incredibly simple, but that may be many years down the road.

A long way from the Flu!

2007-05-02T10:02:00.000-07:00

It's been quite long time since the flu and we are both feeling much better. Actually, better than in a very long time. A number of positive things have happened: I went away to Sedona for a week as a part of my yoga teacher training, for one thing. It was absolutely stunningly gorgeous. Every morning I woke up with the sun and from my window could see the magnificent red rocks speckled with green vegetation, the contrast and the sheer magnitude breathtaking. Then I did two hours of yoga and meditation as the sun rose, had a leisurely and large breakfast and then lectures, more yoga, more lectures, and a hike nearly every day.
It was the first itme I took a trip on my own within the US. I always explored in Europe, Asia and Africa. So I want to get to know my native country. I'm slightly intimidated by its vastness and culture which is far more mysterious to me than Europe. New York is different, it's all squished and full of characters I can relate to. There are many states I've never even been to, like Iowa, Wyoming, Utah, Idaho, Kentucky, Washington, New Mexico, and many more. They are uncharted territory as far as I'm concerned. When I gaze upon a new one, like I did in Sedona, the landscapes shock me with their beauty.
I became close with all 28 or so people that were there with me. We all opened up as individuals and as a group in a way that I'd never experienced before. I feel as though we formed a bond that will be lasting and will bear fruit for us all as the years pass and we all develop and are able to share with each other. Each one of us is quite unique and yet we all function very well as a group.
Parts of me I didn't even know existed opened up their petals. I'm now practicing every day and teaching practice classes to my mother and Louis (Ludek has changed his name to Ludek LOUIS Straka since we started calling him by the diminutive because it's so much easier for English speakers). I feel like the yoga has given me tools that I needed to be able to face the challenges that have been coming my way with grace. I also feel like the things that I've been learning, the 'coping mechanisms' and psychological/spiritual exploration are the next level of the bodywork. What I've noticed is that people, including myself, will work through things, both physical and emotional, while they're on the massage table but then as soon as they confront a challenge that 'gets under their skin' the same patterns (sometimes with slight variation) will manifest in the emotional and physical bodies. So there has to be a way to protect the 'skin' of these two bodies in order to maintain inner balance. We walk out into the world, which is chock full of challenges and potentially dangerous and negative situations, yet we leave the emotional body unprotected and the physical body seizes up in an effort to protect us from being permeated. It's like walking around all day on the beach in August without sunscreen or a sun hat----you get burned. The skin reacts to the damage caused by the lack of protection by becoming red and painful and the damage takes much longer to undo than to form in the first place, sometimes the scars are there for life despite all the aloe vera in the world. Like the painful irritation of a sun burn, the physical body forms layers that are painful to the touch. As these layers are broken down, the physical body begins to feel more free, however, even if we talk through the underlying emotions and acknowledge them, unless we have some way of protecting ourselves from the outside, the equivalent of a sun hat, there will be fresh damage or internal defenses (i.e. emotional defenses, denial and physical blocks of tension). Here's an example of what I'm talking about: as soon as I pick up the phone to call the insurance company about the latest insane bill we've received, I begin to feel tension in my jaw, occiput, neck and shoulders. If I merely try to release the physical tension, I do feel somewhat better, but it doesn't really work because the core issue is that I'm scared that we will lose everything and I feel powerless. So, if I say a mantra of protection and use a mudra (hand position) for let's say confidence and clarity of expression, or for faith (which is the best antidote to fear), I'm able to bipass my rational mind, which is all over the place anyway, and get access to the unconscious level. I'm sending myself a different message from all the fear and self-doubt that is coming at it. On another, parallel, level, I'm acknowledging a higher power and a higher self that is beyond the reaches of the present moment on this plane. I'm protecting the lower self with the guardian of the higher self that is beyond the fear and doubt of the vulnerable emotional body. This is one way of looking at the power of prayer.
Yes, just like I need to heal the sunburn, bodywork, on a merely physical level, will heal wounds. However, it is also necessary to build new, healthy patterns for protecting the self from being permeated by everything, or that one nasty thing that gets right to its core. There are tools that function like a sun hat and have no nasty side-effects. When we are confident in the external protection we have, we can delve deeper into the vulnerable parts of the self and gain understanding because we are not leaving them open to attack. I'm not saying that mudra, mantra and meditation are the only tools, in the same way that there are certainly many ways of protecting oneself from getting burned. What I am saying is that it is dangerous to move in this world without some sort of tools and most of us do not learn healthy ways of protecting ourselves or releasing emotional and physical tension.
It has been incredibly helpful to find ways of dealing with my own negativity that are not punishing nor are they indulging, they are simply transmuting. We can use our own energy to beat ourselves up or to protect, uplift and connect with ourselves. Energy is energy. It's neither postive or negative. It's like money or electricity, it can be used for good or evil, destrucion or construction, in itself it is neither. I can see that the same mental energy I use to worry can be used to coax myself away from that anxiety, to create new pathways rather than running around the same ones all the time. And then when I find myself back on the old one, I can always stop for a moment and clear away the brambles to find a new path. Of course it's easier to stick to the old pathway, but it's much less fun.
Luckily, as money can make more money, energy that's used in a positive way makes more energy. Thus when it is expended in worrying and going in mental circles, it's exhausted and no one can tell what inner journeys are curtailed for want of energy.

Some other positive things: It looks like I've managed, with a great deal of help and guidance, to switch my mother to a better insurance company. That is no small feat. So far it has been better than Atlantis and I'm just waiting for one more piece of paperwork to go through to finally be done with the old. What I learned from dealing with Atlantis has certainly helped me to be able to deal with the new company and I'm now extra careful with everything. It's such a relief to find that the wheels are turning after all the huffing and puffing of last summer. Now I just need to get myself some health insurance.....
In terms of actual health, my mother was able to handle being alone for a week and no damage was done. That's the first time since a year ago. We were both happy to see each other after a week, too. One thing I've noticed is that a lot of people seem to think that I'm itching to leave, but infact that's far from the case. I've grown to appreciate my mother so much over the last year that I can't imagine leaving her and feeling happy about it. I enjoy the time we spend together and I realize that it's limited, in the same way that our time is limited with anyone and everyone we love. I've known that on an intellectual level for as long as I can remember, however now I feel the importance of getting the most out of the time we have together on this earth. Nothing else seems more important to me right now. And it's not any less fun for me than college now that there's a lull in the crisis and I have a chance to explore different things. I'm doing a different sort of learning and interacting with people in a different way. I'm not in a college dorm with a whole bunch of friends, but I have lots of interaction with people all day long. I'm not listening to lectures and writing essays, but I'm learning about the science of yoga and the intricacies of the human body as well as how to deal with numerous practical things. I'm learning just as much if not more than I was in college. I feel like I got some building blocks at Oxford, I read the Song of Songs, now I'm singing! Some people look at me with pity, but I feel no pity for myself. I'm the happiest I can remember ever being. That's not to say that things don't come up, because they do, but I feel blessed to be able to express and truly feel deep and unconditional love. The rest will come in good time. I feel privileged to have been forced to face some major challenges that have changed me so much that I can't imagine going back to my old thought patterns and beliefs. I know there will be many more challenges and chances to examine myself and the world around me. So I'm enjoying the slight lull at the moment to center myself and enjoy the pleasures of relaxation.
My mother is asleep at the moment, perhaps comforted by the rhythmic clicking of plastic keys.....

2007-03-24T20:15:00.000-07:00

Something I found in some old scraps from high school that seems remarkably relevant to a passing mood that comes over me these days:

A Bird on the Bough

Brightly colored girls
smoke in the hallways, congregating
clouds of incomprehensible sound.

Through the windows the sun
beats rubber leaves,
a giant to the tipping plant
in what we will someday call home.

Like a bird I can hear and cock my head, unable to respond.
In the southern lakes of migration my plumes are a faded blue.

From the East, all of a sudden,
my clothing feels worn.
In the light no longer familiar---a sail at port,
my cotton sags.

Another Friday Afternoon

2007-03-24T19:13:00.000-07:00

I brought my mother into the hospital again this Friday, as usual, but she had a fever and they wouldn't let her go home when she was finished with the infusion. They started with the intravenous antibiotics that they give prophylactically but I had to go to my yoga teacher training. So I left mom and the nurses promised to get her a car. Her health is such that she could handle going home on her own as long as nothing out of the ordinary happened. However, the fever failed to go down and so she was taken to the NYU emergency room for the second time in a matter of weeks. I was very reluctant to leave her and at the same time I feel like I have to fulfill some of my other commitments as well. My training is only one intensive weekend a month, yet something like this always seems to happen!
I went to visit her in the emergency room when the training got out at around 11 PM. The security guards wouldn't let me in because it was past visiting hours and my wiles were of no use with the very butch woman barring my way. So I made numerous telephone calls to the nurses who were just a few feet away, but kept on being put on hold and having to listen to a striking variety of elevator style music. In the end I called and told them, "Could you please tell my mother that I, her daughter, have been waiting to get in to see her for half an hour and no one will let me in." The nurse said, "I'll take care of it right away" and the doors swung open for me. As soon as I appealed to her heart rather than her intellect (why had I not been allowed in? What was her condition like? etc.) the obstacles were gone and the whole thing was a lot less frustrating. Luckily, the nurses have more say than the guards as soon as the doors open. My mother was lying in the middle of the chaos of the emergency room but she seemed to be fine. In fact, her face was a beautiful, shining oasis. I couldn't help kissing it all over.
I only stayed a short while and then walked home exhausted. When I entered the apartment I had the eerie sensation that ghosts were watching me. I don't like to sleep alone in the apartment when my mother is in the hospital. I checked there was no one about, despite my rational mind, and then I put the chain on the door. One of my worst fears is that I'll chain the door and then something will creep up on me and will prevent me from getting out quickly enough and I will be submitted to unthinkable, abstract tortures. So I always check all the rooms first.
I actually slept well and was up and ready for teacher training early in the morning. I picked up my mother in the afternoon against medical advice because she absolutely did not want to stay there any longer. I was slightly late because I had to walk circuitously about the hospital due to massive cranes blocking all the normal entrances, luckily I met a nice French student who is studying neurosomethingorothers and brain plasticity. He's from the Loire Valley, where I happen to have some family, and the converstation was a nice way to mitigate the frustration of having to take a very long and pointless route all around the hospital. When I arrived to pick her up she already had her coat on, her bag packed and was sitting up in bed.
She is home now and seems to be fine. However, when I got home tonight I discovered some disturbing medical bills and found my panic button was jammed. My heart races and I get so scared that we are going to be ruined by this horrible insurance company, which, for the record, is called Atlantis---ironic, huh?

A Sleet Storm

2007-03-16T19:50:00.000-07:00

Today in New York City there was a sleet storm for most of the day. I ventured out with plastic bags inside my boots and my feet still got soaked somehow. I've never seen so much sleet. Strange how different snow feels.
On Monday afternoon I brought my mother into the emergency room again because she exhibited some symptoms in the morning that reminded me of the week before I finally brought her in and she had emergency brain surgery. Her symptoms subsided after I gave her some Tylenol, but the neurosurgeon said I should bring her in anyway. After hours of waiting and then getting various scans, it turned out that the shunt from my mother's brain into her stomach wasn't working properly, so her brain was swelling again, and there was some herniation of the stomach. So she had to stay over in the emergency room and then had surgery again the next day. This time around was very different from the first because she was totally fine---I mean she wasn't delirious or even ill---and we both felt a little blase about the whole thing. She was hungry while in the emergency room so I ran out and got her a Greek salad and we sat together on the hospital bed right in the middle of everything picking away at feta and olives.
She ended up having to stay for two nights in the emergency room because there were no beds free in the neurosurgery unit. When I went to pick her up in the morning after she'd recovered from the surgery, she already had her coat on and was all ready to go. We signed the paperwork and just walked out with a fruit basket with a get-well card that the hospital staff had given her .
We are getting so used to all this that we hardly think anything of the surgery, which involved slicing through my mother's stomach and accross her abdomen. I took over everything for a couple of days, which was much smoother than the first time around, and now we are basically back where we were and I'm hoping that some of the nausea she was experiencing was caused by the faulty shunt, so maybe she'll actually feel better now. We also managed to get the Marinol (medical marijuana in a pill form) approved by the insurance somehow. The young man at the hospital who does this stuff for us can work wonders.
It seems like everyone I talk to has family that has recently been diagnosed with something major, mostly cancer. Someone I was talking to today suggested that maybe it's the coming of the apocalypse and it occured to me that perhaps the apocalypse isn't this sudden, dramatic catastrophe but all these catastrophes at a microcosmic level. There are these little bombs going off everywhere I turn. Strangely, it doesn't exactly make me unhappy. I wouldn't say it makes me happy, certainly, but I feel calm and accepting at the moment. I feel prepared for whatever curveballs are coming my way. Although this may be totally delusional, of course.
I just look and I see my mother eating ginger candies I bought for her and wearing these funny house slippers I got when I was out shopping for something to wear (since all my clothes are still in England) and I can't help feeling peace. I don't care if we are in the midst of this mini apocalypse, if I may venture such a paradox, because she's like a happy child and I feel oddly proud that I can bring her little treats and rub her feet while I babble away about all my ideas about the body, language, boys or whatever I happen to be thinking about. In the midst of what could be the greatest tragedy I feel the most genuine love. It's a love I can't quite fit into any preordained box, it seems to transcend any ideas I may have had about love.
The good news we learned from the MRIs while my mother was in the hospital is that her 30 plus brian tumors have practically disappeared!

Hospital Fridays

2007-03-09T16:12:00.000-08:00

Fridays are the day we spend in the hospital. Every Friday afternoon a little before two a car comes to pick us up and we drive over to the Clinical Cancer Center on 34th Street. We get a car back at 6. It all starts with a finger stick; the nurse jabs my mother's finger and collects a blood sample, which is used to check her white and red blood cell counts. If the whites are too low, she gets Neupogen, if the reds are too low, she gets Aranesp. As soon as we walk into the building my mother suddenly reverts from the intelligent and mentally capable woman I know her to be into a four-year-old girl who asks no questions and does what she's told. Her gestures change, her eyes widen and the nurses all flock around her. I watch like a hawk and ask lots of questions, I keep track of what they're giving her and I act as her voice because once we enter through the opening of those automatic glass doors, her's is gone. She's out of her element, the vocabulary is not of the body but rather of the pharmacy.
After we see the doctor we go up to the infusion room and my mother gets chemotherapy drugs pumped through her port. Today I asked how long they were planning to continue like this and, as I had already guessed, the answer was as long as it works to keep the cancer cells from proliferating. In other words, indefinitely. The longer the better, in a sense, because if they stop it means that the it's no longer stopping the cancer from spreading and they have to try something else. So we will, in this system, be going to the hospital nearly every Friday for the rest of my mother's life. So much for Thank God it's Friday! On the other hand, of course we should be grateful that my mother is alive and getting better all the time.
While my mother was getting treatment, I went up and spoke with the financial counselor because I'm working on getting her inurance plan changed and also I got her a prescription for medical marijuana to help with her nausea and stimulate her appetite. It has to be called in for pre-approval with all sorts of notes and such because it costs $400! Anyway, we should be able to get it covered, which would be nice. It was quite funny when the doctor suggested it after my mother continued to complain of nausea despite all the anti-nausea medications they've tried. He asked her, "Um, Cathy, did you smoke, hm, pot when you were younger? People who liked it usually do well with this...." She was not into pot, but hey, she was never into shrimp either and lately she's been devouring them.
I spent about two hours with the financial counselor, he kept on saying how busy he's been and then when I said we could talk another time, he kept on asking me to stay. So we made lots of three-way calls and figured out exactly what the situation is. It's a lot more fun doing this sort of investigation as a team. Basically, I'm going to send in my mother's application to switch to a new HMO tomorrow and, fingers crossed, there shouldn't be a problem.
When we walked into the elevator at the hospital my mother commented that I know the place much better than she does, and it's true. I know the place like the back of my hand, I know almost all the nurses and the receptionists. My way of making the whole thingh less of a nightmare is to make sure that I've scoped out my surroundings. If I have my allies, I'm not so scared that we'll be thrown out on the street and refused treatment.
I returned from speaking with the financial counselor to find that my mother couldn't get up at all after the chemo. I pulled her up, but she fell right back. So in the end I got the nurses and we managed to get her downstairs, but she seemed slightly delirious and when I asked her how she was feeling she patted her walker and said, "Gonna sell it." She soon appeared more normal, except her nose looked sunburnt, so I went out and got us some food, which is our usual ritual. I go and get takeout from the Greek or the Thai place and we eat dinner while we're waiting for the car to arrive. But in the meantime, some nurses saw that my mother's nose looked a bit funny and she was swaying and when I got there she was being nursed. I know they are doing the right thing and I'm glad that they're there, but at the same time, it's embarrassing to me----I feel like they're judging me and thinking that I'm not doing a good enough job. When they look so concerned it scares me. It breaks the illusion of trying to live a 'normal' life.
We got home fine with a nice driver who only seemed to know the phrase "Thank you" in English and kept on patting us both on the back and repeating it. When we got into the apartment I ran my mother a bath with epsom salts and lavender oil and now she's sitting quite happily with a mug of raspberry ginger tea. So another day passes and we are still alive and functioning. We can pinch ourselves and feel our own flesh. I'm beginning to unwind from the stress of being in the hospital but haven't had my own bubble bath yet.

Round Two

2007-01-06T15:48:00.000-08:00

Nighttime was when my mother fought the demons the hardest. She would get a burning sensation within her body, underneath the skin. Despite the fact that I was icing her sacrum, where the pain from the tumors was the worst, every 20 minutes, she was hot all over. She had a back brace with ice packs in between her skin and the brace. I would stand next to her at night and coach her through her nightmares. The recurring one was of her Last Judgement; there was a panel of people telling her she had to give a list of people who loved her as proof that she should be allowed to stay on this earth. She would try to make the list while at any minute she could be expelled into the unknown. There were also dreams of fire.
We would imagine the chemicals running through her veins were burning up the cancer cells. She would hold onto my hands and say "I'm not gonna die?" as a desperate question, the type that just needs reassurance.
I remember when things began to turn. The pain lessened and my mother was able to start walking on her own. I remember the first time she went to a doctor's appointment by herself. And then the first time she was out and someone asked me where she was and I couldn't answer. What a wonderful feeling.
We even got out of the city for the first time in September, after having spent the entire summer in our high-rise apartment in the middle of Manhattan. We went to our cousin's wedding in Royalston, Mass. My mother was walking around looking like a pixie in her headscarf, eating lots and smiling. She had shrunken about six inches because of the compression in her detonated spine, which made me feel even more protective over her than usual. Suddenly I found myself taller than my mother---and she had been a good three inches taller than me. I started calling her baby mommy, it somehow rolled naturally off my tongue. I found myself wanting to hug her and pinch her cheeks all the time. The wedding was our first chance to get out of our situation, our first chance to reflect. It wasn't entirely easy, but when I was able to jump into the pool with my cousin Damon the day after the wedding, I felt torrents of stress flow out of my pores.
My mother began working again. I still took some of her clients and saw a few of my own, but we were able to part with her student who had been working for us and run the show on our own again. We started going back to yoga classes together. My mom would go down to the gym to use the stationary bike and I trained her with weights so that she could get back her strength and nerve function. She grew stronger every day.
However, the last chemotherapy treatment she had wiped her out. It was administered through a port which she had surgically implanted into a vein in her chest and it was pushed through very quickly. Whereas in the hospital it had always been administered over the course of three hours with multiple bags of saline, in the insurance doctor's office it was administered in 15 minutes with no saline and my mother was just told to drink lots of water. Two days later she was vomitting her guts out and was completely incapacitated. It took weeks for her to recover and she told me she refused to ever go through that again. No one at the doctor's office seemed to care particularly.
She was going to continue with the Herceptin, but then she started having some weird side-effects and didn't want to do that either. So, as she was feeling much better anyway, she began to go with the holistic route, which she had been doing as complimentary therapy all along. Things continued to improve and, although I had a sneaking suspicion there was more to come, we tried to convince ourselves that everything was alright, that we could keep it under control. My mother was doing really well except for occasional vomitting and nausea until about two months ago, when she started to have these sort of seizures and fevers. When I told the doctor's, they told me to give her Tylenol and see if the fevers would go down. They always did and I was able to nurse her through them. But then one day just over a month ago, she woke up vomitting, vomitted for a day and then couldn't move for a week. I kept her hydrated and tried to find a doctor who would come to the house. My friend helped me get some numbers, but no one was qualified to deal with my mother's situation and I couldn't move her at all. She couldn't even lift her head for a week. On the seventh day I called an ambulance and took her to NYU medical center. The did a CAT scan and then an MRI and it turned out she had over 30 small brian tumors. The tumors took up space in the brain, mainly in the cerebellum, and the ventricles where the cerebrospinal fluid is stored were swollen. An incredible amount of pressure was building up in her brain, which explained her bizarre symptoms. She had brain surgery that night and her cerebrospinal fluid was drained into an external bag; you could see this pink liquid just hanging there at the side of her bed, coming from inside her brain. She stayed in the ICU for about two weeks and the neurosurgeons monitored her. The fluid is now, thanks to another operation, shunted into her stomach where it will drain off if the pressure controled valve is triggered. My mother also went through three weeks of radiation to the brain, which was surprisingly painless aside from fatigue and the inevitable hairloss.
The first time she lost her hair was much more dramatic. I was bathing her in the shower and suddenly it started coming out into my hands in clumps. I just continued running my hands through her hair and it all came out, it seemed to be endless. This time around it was more gradual and there was less of it, it just came out all over her pillows.
Now she is out of the hospital and rising from her own ashes once again. The second time around I have a much better idea what to do. For one thing, I have diapers. But I am also ensuring that she gets proper treatment from a hospital team that I trust. After months of struggle, I said to myself, "This has simply got to happen." I couldn't see any stepping stones, but I knew I had to arrange it. I made one phonecall to someone high up at NYU and voila, a week later he called to tell me it was sorted out and he had spoken to the insurance company. I called the lawyer to verify, and, sure enough, as soon as I let go of my desire for strategy, things fell into place. So my mother will continue treatment at NYU and so far I have been impressed with them. They even explained all the MRIs to me and showed me where the swelling was and exactly what they were going to do.
However, one thing that happened while my mother was in the hospital was that I had to take over the running of the household and her business. Suddenly I found myself working full time for the first time in my life with no boss or co workers, just me, my mother's cleints and the telephone. I was somewhat prepared from the summer, but it was still a shock. Suddenly I was paying the mortgage, giving the doormen their Christmas bonuses, answering all the phonecalls, making sure the bills got payed. I continue to do all of this now and look after my mother who is now at home and requires a lot of care. Hopefully on Monday a nurse should be coming in to help. The main thing is she's happy to be home, eating a tonne and now happily reading a book. What more can one ask for?
I'm riding the waves, trying to find the balance between being professional and friendly, doing my work which has had to be cranked up about ten notches in a matter of weeks, and trying not to think about the future. Questions like, "Will I ever be able to go back to the irresponsible life I had as a student?" often rear their heads, but there are no answers. I'm learning what it means to live in the present because I have no other option. The present demands my constant attention.

Trying to start from the beginning...

2007-01-04T15:29:00.000-08:00

I am attempting to find a place to start the story of my greatest surventure yet. A surventure is a surprise adventure, one of life's most common yet somehow unexpected phenomena. I would say that mine really began when my mother gave birth to me in a grimy Noho basement in the summer of 1984. She gave birth to me without a doctor or midwife, I was simply born too quickly. The midwife rushed over as soon as she called to say she was in labor, but 15 minutes later I was out and my father was taking pictures of me while I was still attached to my mother by my umbilical cord. Once the midwife arrived my mother was ready for breakfast and we all went out together and weighed me on a fruit scale. Or so I'm told, I don't remember the breakfast or the market at this point.
The reason I begin this story with my birth is not so much because it is the obvious place to begin, but rather because it is about what it means to be my mother's daughter, what it means to have been connected by that cord which was physically cut yet still remains invisibly connecting us to each other.
What I never realized was that I would end up babying my own mother when I least expected it. She had always been fiercely independent. She ran her own business and was certainly much more successful than any of the men in her life (and there were a fair number---three of whom she married and divorced). She was athletic; her whole life and career revolved around health and fitness, she did all of the things that magazines and medical journals claim prevent cancer, like eating lots of antioxidant-rich foods, etc. We have good genes and no one else in our family has been diagnosed with cancer, my grandparents are in their eighties and there's no sign of anything of the sort. So you can imagine my surprise when , in the last term of my second year at Oxford, my mother called me to tell me she needed me to come home right away because MRI results had shown that she had tumors in her spine. The back pain she had been treating like a sports injury was in fact caused by tumors pressing into the nerves along the spinal cord and running into the legs.
I bought a ticket right away, informed my friends and professors, packed up everything I owned and brought it to my granparents' house in Sussex, and hopped on a flight to JFK. I arrived at our apartment around midnight. As I opened the door, I could hear moaning. I dropped my bag and went into the room where the sound was coming from to find that my mother had somehow got out of bed and couldn't get back in and was leaning over it in agony. I lifted her legs into bed and just cried over her. There wasn't much else I could think of to do. I set up a futon on the floor and crashed.
In the morning I awoke to hear more moaning again. My mother had tried to get up to go to the toilet and hadn't made it. I found her covered in her own feces, in pain and trying desperately to clean herself up. Her efforts only made more mess. I spent about an hour cleaning and disinfecting her and everything around her. Suddenly our apartment felt incredibly impractical. Why have things like carpets and objects that just get in the way and get messy? I was in a constant state of anxiety that I would miss a spot. I put the chain on the door so that no one could come in because we have clients and other random people coming in and out of our apartment all the time because of the way that my mother has set up her life. I was always paranoid that our home would smell. I did eventually get diapers, which helped, but they only work about 50% and there's still a lot of cleanup. I would throw everything in plastic bags and run out to the garbage shoot constantly. I had never been so grateful for things like plastic bags.
Like with the diapers, I had to learn about a lot of things the hard way. I had to learn about how to deal with evil insurance companies, for one thing. That was truly a nightmare because it never made any sense to me. Sometimes I would show up at the pharmacy to get the pain relievers my mother desperately needed immediately and the bill would be $3,000 for one bottle because the insurance hadn't approved it. One of my mother's cancer drugs costs $48,000---luckily, I managed to get that covered. So I would pay and then fight later, sometimes succeeding, sometimes falling through one of their many cracks.
I struggled to get her a decent oncologist, a word I did not even know before this whole thing started. Cancer was definitely something that happened to other people, people who smoked and ate meat, people who were genetically disposed. Not us. We were so healthy; my mother never smoked in her life and she lived on green leafy vegetables. Without even realizing it, I had attached a stigma to something I did not remotely understand. I remember sitting in a Galician (the language spoken in the northwestern part of Spain) lesson with my teacher Maria and we were going over the names for different types of doctors. When we came to "oncologo", I had no idea. That was only a month before metastasis, her-2 positive, trastazumab and Neupogen were a part of my everyday vocabulary. The words made me feel like I had some understanding of the disease which had so rapidly taken over my mother's body and thrown her into nearly unbearable pain.
In the first week I came back from college, I brought my mother in for a biopsy of her left breast. The breast flared up in to an inflamed mass which meant the doctors were able to take a sample of the tissue, something which was not possible in the spine because the tumors were too internal. It turned out that the breast was the primary metastasis and had not been apparent because inflammatory breast cancer, which is very aggressive and only makes up about 1% of breast cancer cases, does not form a lump. It forms a sort of web along the lymph nodes and then it can suddenly come to the surface and form what is technically called "orange skin" because it has a rough texture like the peel of an orange. I watched as the doctor cut a piece of my mother's breast, the same breast that nursed me into this world, and sent it away to a lab to discover that that same breast that had given strength and nourishment to me and my little brother was attacking my mother and threatening her life.
After that it was a whirlwind. I knew she had to get treatment right away and I had never had any dealings with medicine on anything close to this level. There was no one else in my family that could step up to the plate, so I arranged appointments, argued with the insurance company, all the while knowing that every day counted. So we began treatment without the insurance at a hospital uptown. I would take my mother along the Westside Highway in a car service to go to the infusion room to get pumped full of heavy chemo drugs. She was blasted with them because she was in such critical and advanced condition. She was in a wheelchair and I struggled with it. I struggled with her diapers, with her pain. Sometimes she would walk a step and then begin screaming and I would run for a chair, then run for the Fentanyl patch and the oxycodone. I would have to watch her screaming for about 20 minutes or so before the drugs began to kick in a bit. All I could do was rub her legs and feet or squeeze her hands.
Then there was my brother who came back from Arizona where he has been living with his father for the last year or so . He's 16 and he wanted to play World of Warcraft all night and then sleep all day, taking up the only room that's private, i.e. no clients, in the house and not contributing in any way other than dumping his Chinese food cartons in the trash. I didn't ask him for much because I didn't have the energy to try to discipline him, but I did once have to dump a glass of water on his head when he refused to take my mother to the one doctor's appointment I asked him to. I pleaded with him for an hour and he wouldn't budge. My mother was there sitting crying in her wheelchair ready to go. Eventually I gave up because he is physically much larger and stronger than me and I can't force him to do anything. I told him he had five minutes to get his ass down to the car which was waiting downstairs. Just as I was getting my mother into the car, he showed up behind me and grumbled "I hate you, Tara" and got in next to her. I was relieved and was able to have a moment's rest. That was pretty much all I got out of him all summer.
Although many wonderful friends leant me their ears and support in many invaluable ways, the person who helped me the most was quite a surprise, it was my boyfriend (now ex for a number of complex and very simple reasons---mainly geographical distance), Ludek. He came from Prague for the first time in early July and although at first he was helpless and just stood like a tree stump until I barked at him to fetch paper towels or a fresh diaper to deal with whatever mini crisis was at hand, he soon picked it up and would take my mother to doctor's appointments, do grocery shopping, etc. He was the only person I could really rely on, and he would unconditionally cuddle me at night while we slept in the same room with my mother, getting up periodically throughout the night to deal with her ailments. He gave her footrubs every night and then stroked my hair and let me sob into his chest when I gave in and let go for a moment as we went to bed.
Of course what he couldn't do was actually be the brain behind operations. I found myself, for the first time in my life, having to direct people because I was the one that held together all the pieces. I communicated with all the doctors and everyone else, I was able to make the decisions for me mother because I know her far better than the back of my hand. I felt like I was making them for myself because I still see that invisible cord connecting us. Sometimes I felt guilty because my body is basically in perfect shape and I experience no physical pain. Sometimes she would watch me enviously when I stretched. It was she who taught me how to stretch, how to relieve my previously chronic midback pain. It was she who introduced me to the relief of physical exercise. I used to go to yoga and spinning classes with her when I was fifteen, then I started working out at the gym with her in the mornings before school. That's the main reason I was able to quit smoking and change my tools for feeling good from substances to actually feeling good from within my own body, to producing my own feel-good substances.
During the past eight months that I have been here fighting with this I go down to the gym if I have 20 minutes and I listen to music and run or lift weights so that I can go back to battle. I feel like I'm living in a war zone and everything I do is a part of it. Every relationship is an ally, every meal is fuel, every penny I make is a part of this attempt to survive and to lift my mother up so that she can walk without my support again. I fight on blind faith, the truth is I have no idea how long the battle will last or what the outcome will be. And the truth is the outcome seems less and less important to me. All I need to know is that I put up a good fight, God or the universe has to take care of the rest.
TO BE CONTINUED