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.
Saturday, January 6, 2007
Thursday, January 4, 2007
Trying to start from the beginning...
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
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
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