Aloha

I was in Honolulu with my coworkers for a convention (yes I have a very generous boss..!)--spent a very enjoyable (understatement) 8 days on the lovely isle of Oahu, where I was born. It has been 3 years since I was last there.

Spent a lot of time on the beach and swam nearly every day. Snorkeled on Friday and a sea turtle came up out of the reef/rocks right in front of me!! He was beautiful! I watched and swam along with him for as long as I could, until a guy with an underwater camera scrambled up and scared the turtle away. I considered the sighting quite a nice gift, and one of the highlights of the whole trip. Got sunburnt a couple of days ago--even with sunblock. Hope to write more of my trip and hopefully get some pix up.
But I had such a good time, it was just what the Doc ordered.

I flew back home last night, and was shocked to wake up to the news of the earthquake this morning in Hawaii. Airport closed, no electricity, water, rockslides but fortunately, no reports of deaths. I still have some family (uncles, aunts, cousins) there so hope they are OK. Will attempt to contact today.
Hope life gets back to normal soon for everyone there. My prayers are with them.

unpack, pay bills, open mail, get ready for work tomorrow....

Light The Night

this Saturday is the Light the Night Walk!

I am looking forward to it--will be the easiest one yet, now that I've got this fabulous new hip that got last summer! woo hoo!

but on a more serious note, I will walk not only to celebrate in thanks for my remission, which I pray will continue, but for all the support , knowledge, research that the Leukemia & Lymphoma Society provide. Also, the past two years I've participated, three people, all close to my age, that I was acquainted with from my work, have passed away. Two had a more advanced leukemia, the other lymphoma, all were given the best care and treatment available. However, the oral chemotherapy drug that I take every day, Gleevec, does not help the types of blood disease that these three had. I pray that new ongoing research will bring new and successful treatments for all.

If anyone out there in blogland is interested in sponsoring me or would like to know more about the Society or the Walk, please visit www.active.com/donate/ltnSanFr1/1895_HPazminLTN

I am here

yes, it's the worst blogger in the world, back in the blogosphere!

Despite computer problems, life, work, and summer colds, I am back.

Today was the first time in ??? a while I have been able to watch an entire episode of "In The Attic" without an interrupted feed throughout!!!! Just like the old days (waaaay back last summer) when "Attic" first appeared. What a treat!!

hope I can get a new computer soon, and retire this outdated behemoth . can't view any quicktime videos and I think the latest version of Windows Media Player is not compatible with my old Windows program....but not sure, I am clueless for the most part with these newfangled machines...!

Bargain

(Continued from previous post...)

"Your drug benefit saved you $2,473.85. Retail price: $2,503.85."

At the pharmacy, I did a double take at my receipt handed to me with a small pill bottle (one month's supply) of Gleevec, my medication that I would now begin taking that day, to treat chronic myeloid leukemia.

I call THAT a bargain, the best I ever had.

All I wanted to do was go home. I felt numb. I still had hope that the diagnosis would not be cancer, but now that it was confirmed, what now? I called work to let them know I wouldn't be going in for the afternoon. "Are you alright?" My coworker asked. I told her the initial diagnosis was confirmed, and it was treatable. I got off the phone quickly, suddenly feeling very shaky. When I got home and collapsed on the bed, I felt a flood of tears were about to be shed. Questions were filling my head, "How did I get this? How long will I live? Will the pills work? Why did I have to get this?" I immediately answered, "Why NOT you?" I flashed on laughing hysterically at my Derek and Clive albums of so many years past, of having "f!%**ing cancer". I half smiled at the memory, but now felt a little guilty that I thought it was a laughing matter. How the worm/world turns.

My thoughts went to Meher Baba saying that one's karma could be worked out through one's health. (I'll try to find the quote.) I thought of all the people I'd read about on the leukemia website, most of them diagnosed a few years before Gleevec was FDA approved (May 2001), some of who advanced to acute stages of the disease, some who lost their lives. How many people are told by their doctor that they have cancer yet can be treated successfully in the same sentence? How strange to be diagnosed with a less common form of leukemia, but to be able to have a newly created drug to halt its progression? Most leukemia patients' options are chemotherapy, bone marrow transplants, or drugs that are so strong they make one weak, ill, unable to work. With the drug being so expensive, how do patients without health insurance afford it? It's bad enough dealing with the diagnosis, but to worry about how to pay for it? I was glad I had a job with health benefits. So this was my karma, to get this cancer, but to hopefully be able to achieve remission and regain my health and life.

Instead of the flood of tears, I lay on the bed, in amazement. I didn't feel lucky, as much as blessed. Blessed by God's grace and compassion. I was paying the Piper, but he was allowing me pay back with a plan I could live with. I felt calm and humbled and grateful.

THIS was the real bargain, the best I ever had.

The Other C Word

At the end of 2002, I started feeling tired all the time, would sleep any chance I got. I put it to working more than usual.

In January 2003, Pete Townshend was arrested, wrongly accused, I knew, but some of my friends and acquaintances were skeptical, and gave me a "oh you poor deluded little fan" look, when I sprang to his defense of innocence. Lots of nights lying awake praying, worrying, wondering how he was. That same week I began to notice numerous bruises on my arms and legs. During yoga class, my first after taking a little break from the Christmas holidays, I felt a muscle strain, but a couple of days later, I had a huge purple bruise running down the entire length of my leg. Not pretty. Wow, I must really be out of shape, I thought. I had stopped taking ballet class by then, and replaced it with yoga, pilates and the gym. My husband started nagging me about getting it checked out. "A strained muscle shouldn't give you lumps and bruises that severe." I knew that, but was more concerned about getting time off from work to relax, and already had my attention focused on managing my hip arthritis and pain. Besides, after a month or so, the bruises were not as frequent. So I didn't go to the doctor.

By the time fall arrived, the bruises were back, without me knowing how they got there, and they looked bad. I was a bit paranoid about going to the swimming pool, I looked like either I'd been hit by a car, or worse, like I'd been beaten. I tried using make up on my purple forearms to camoflauge, when I'd go out. It only looked more suspicious. Okay, how about long sleeves and trousers. I began losing weight, which I was rather pleased with at first. I ate as much as I wanted and I went down two sizes, without even trying. "This is great! I need to buy some new clothes!" The night sweats started, fevers out of the blue, the constant exhaustion. Chronic fatigue syndrome maybe? I drank lots of coffee and green tea to keep me going. By Christmas, my legs and ankles began swelling. "Must be all the Christmas shopping and being on my feet", I thought. But it started happening first thing in the morning. One of my friends saw it and said, "Call the doctor now!" My husband also renewed his urgings about checking it out, so I finally scheduled an appointment with the doctor for a couple of weeks out, (the Doc was on vacation) in January 2004. I was glad once I did, because I finally realised something must be wrong with me, for the symptoms were starting to affect my daily routine.

At my appointment, I didn't have but a few little bruises to show the doc, and the swelling was not as bad--(!???!) The doctor responded, void of expression or interest, to my disbelief, "Sometimes when your socks are too tight, it can cut off your circulation..." I felt insulted. What just a minute! I know I've downplayed the symptoms to everyone else, including myself, but I feel something is definitely wrong, and it's not because my bloody socks are tight! "Okay, let's get a blood test" she said, pressing a finger into my leg, leaving an impression, and slowly springing back, like dough. "Hmmm, you are a little swollen..."

The next morning, as soon as I arrived at work, my doctor called. Her tone was completely changed from the day before, her voice alarmed. "Are you sitting down? Can you talk now?" Just tell me! "I received the results of the blood test you took yesterday, and you are severely anemic. The white blood counts are extremely high, and I suspect either leukemia or lymphoma. We need more tests to confirm this. We need a chest xray done today, and I'm setting you up for an appointment with an oncologist as soon as possible." I listened, but thought, you mean, cancer?? "Are you sure? Can the anemia be caused by something else-like just an iron deficiency?" I asked. She said with the numbers of the blood test, probably not. I couldn't really think of anything else to ask at that point. I didn't believe it could be that. I was going to wait for more tests and do more research on my own before I started to panic. Or have my loved ones panicking.

The chest xray ruled out lymphoma. Good news. More blood tests. My internet research on leukemia was disturbing. Some of the things I read at first sounded like certain death within a short time. Chemotherapy. "You may want to get your affairs in order." I found the Leukemia and Lymphoma Society's site more encouraging and informative.

My sister accompanied me when I saw the oncologist a week later, but I didn't want her to come in with me. This doctor was younger than me, from India, cheerful and approachable. "The results of the blood tests (I had a couple more done since the last one) are consistent with chronic myeloid leukemia, or CML. But we have to do a bone marrow biopsy to confirm this. " There were a lot of questions asked, both ways. "Do you work around petroleum, printing press...." no "How do you get it?" Don't know. One acquires it, (like a new handbag?!) usually in their late thirties, or forties. It's a less common form of leukemia, but one that is treatable with new drugs. Okay..... "Are you pregnant?" we've been trying to have a baby, and I'm late...

I went in another room to do a pregnancy test, and to prepare for the bone marrow biopsy. I'd read about it in my research and the sounds of it scared me. A big needle that takes out a bit of your bone marrow, then analysed for the tell tale defective chromosome, called the Philadelphia chromosome (named after the city where it was discovered; the year I was born). A change in one's DNA causes two normal chromosomes, #9 and 22, to "translocate" or swap, and the body keeps reproducing the abnormal white cancerous blood cells.

The ocologist came back in the room after a while. The nurse had me lying on my stomach, as the needle was going on my bum. About where the dimple is, where the bone is softest. "Your pregancy test came out negative." My face must have showed how disappointed I was, because she asked, " Does that make you sad?" Suddenly tears started to fall.
yes I barely said. She patted me on my shoulder and said "I'm sorry." Which only made me cry more. I put my head down and quietly bawled into the paper lining the examination table, my bum exposed as the doctor and nurse numbed me. I imagined what an odd sight it all was, but I couldn't manage a snicker.

I knew at that moment I was probably never going to have a baby, and that I probably did have cancer, and how would my husband take the news? My life and my plans were suddenly changing in a drastic and unwanted way, in a matter of minutes. I started repeating Meher Baba's name, over and over and over. Something I always do when I need help or strength or comfort.

The procedure was painful. "The cancer cells are so rampant, I can't get enough bone marrow, just a lot of fluid. I have to try another spot". great......
She finally got a couple of decent vials, and sent me off for another blood test. I had to wait nearly two weeks for the results to come back from the lab for the biopsy.

On my way out of the double doors of the Oncology Department, I could see out to the nearly empty waiting room, and my sister, trying to read a book, crying. Instantly I remembered Baba's words in my head, Be cheerful, it will help others. I released a big sigh, and pushed open the door, and as soon as my sister looked up, a smile came to my face, because I was so genuinely happy she was there. Her expression changed and she smiled back at me.

I waited till my husband came home till I told him about what had happened. He has been my rock then and now. No matter what happened, we would be okay, and get through it together.

Back at the oncologist's a week and a half later, I sat waiting for the doc, looking at paintings on the wall of tropical places, and thinking about my wedding, held on a remote beach in Hawaii, just after the sun came up, with just the sea turtles on the shoreline, my immediate family and the reverend in attendance. It was a long time, it seemed, before she finally came in with the verdict.

"Yes it is CML," and she quickly added, "but we can treat it and manage it with a brand new drug called Gleevec." "Is it chemotherapy?" I asked, visualising all my hair falling out, all the wild, curly long hair I used to hate as a teenager. "It's a pill, sort of an oral chemotherapy. We'll start you on it today. The results have been very encouraging. So don't worry, you will be okay as long as you stay on it." The side effects included fatigue, nausea, weight gain,to name a few, and it was so new, long term effects were not available. She advised against getting pregnant whilst on the drug, as they didn't know how it could affect the baby. She also advised me against having a bone marrow transplant, the only known cure at present. One has to find a suitable donor first and then survive the transplant. The risks were too great , and usually only done on younger patients, she said. I would take 4 tablets of Gleevec each day, and have blood tests done once a week. The first task was to get the blood counts down to normal. "What's normal?" I asked. "About 4-10,000 white blood cells. Yours are at 197,000 right now." oh
To Be Continued........................
Tomorrow I go in for a follow up to check my status of CML.

Faith in Something Bigger

I began to ponder the meaning of life when I was fifteen, in 1975. "What am I doing here? Why am I here? Why are we all here? Why is there suffering? Is there life after death?" I definitely felt out of step with all the other kids at school, who only seemed concerned with the opposite sex, football games, school work, being popular, getting good grades. All my friends ended up going to different schools or moved away that year, and I was overwhelmed by this college prep high school, where first class began at 7:30am and ended at 5pm, get home on the bus about 6:30, I'd finish the mounds of homework at about 1am or later, be up at 6am....on this went for many months.

At first, I started having strange sensations. I'd be walking to school and I would feel I was thousands of years old, not like being tired, but as if inside I was ancient and weary. Then feeling like I was going out of my body, as if I were dying. Looking down at my feet walking, I could no longer feel them or have any control of them. Then I would feel as if they were leaving the ground. As I started to panic, the sensation would stop, I'd look around to see if anyone else was about on the street, but every time it happened, there would be no one around.

I decided I was suffering from overwork and sleep deprivation. I started becoming depressed. I thought I was going mad. Feelings of futility, isolation (mostly self-inflicted, I assumed no one would understand-I vant to be alooone).

One day in the school library, I happened upon a book about various recent cults, gurus, spiritual teachers, practices. I looked to see if Pete's Meher Baba was included, of whom I knew really nothing about. There was a paragraph long description, and I was intrigued by his silence and curious to know more about him.

My dad was always interested in mysticism and Eastern religion and philosopy. "Religion is man made-- God didn't make the churches or write the Bible. " He was brought up Catholic, in Hawaii, a land where the native people, their language, traditions and beliefs were suppressed, banned or replaced by the haoles (white man). My mom was brought up Protestant, in the South, who silently questioned the racism around her. She told me her grandmother, as a child, used to sneak out and sit in the grass on a hill overlooking a Baptist church, "just to hear the beautiful singing of the black folks as their voices carried up the hill". As a child, I was fascinated by the stories, the art, the candles, the romanticsm of the church. I thought I'd want to be a nun, or a saint like Bernadette, like in the movie. I used to see angels flying about my crib at night as a small child, much to the amazement of my parents as I would announce this at the breakfast table. I had paranormal experiences throughout my teens, which frightened but fascinated me. So in my desperation and fantasies of "What would happen if I packed it all in?" I began to quietly ask for help deep inside, to God, whether He was Jesus, or Buddha, or Baba.

Meanwhile, Monty Python's Flying Circus just started airing on the local PBS station, and I was glued to the screen from the first, struggling to do my homework, and laughing hysterically at the same time. I was listening to "Who By Numbers", released around this time, and what a cheery collection of ditties that was. "Is Pete as depressed as I am?" I wondered. But the songs were appropriate for my mood. Between Python and the Who, and my parents constant love, I was getting through the winter days. But by January '76, the depression and questions and school pressures and fantasies of suicide were taking over my consciousness again.

Then it was announced that the Who were coming to San Francisco for two nights. They were playing Winterland, a venue smaller than most, and a lottery was going to be held for tickets. My younger sister, 13 at the time, and I asked Mum to help us with the cost of the tickets (some ridiculously low amount, by today's standards, I'm sure). We had enough to send in asking for each night. My best friend, who I hardly saw much of at the time, also sent in her bid. My sister's favourite Who member was Roger, my friend loved Keith, and I loved Pete. I had pictures of him plastered of every size all over my side of the bedroom wall, Roger on my sister's side. And various Who posters everywhere else in the room we shared.

When our request for tickets was mailed off, I made my plea: Please God let me get to go because I don't know how I'm going to make it through alive. If you're there and you hear me please grant me this.

About two weeks later of tearing the mailbox open every day, there sat one pair of tickets for us. My friend didn't get chosen, as well as our bid for the second night. But I was going and I couldn't wait. It would be my first time seeing them perform live. I felt certain it must have been Divine intervention, and I was thankful.

Before the show started, they were showing several Python episodes, Keith's doing I'm sure. My sister and I were down front, close to John. Needless to say, they were bloody amazing. I was making mental notes to tell my friend everything I could see of Keith. I wanted to get closer to Pete's side, but the crush on that end was intense, and I had to mind my little sister. But I could see Pete just fine, jumping about, seeing his Baba pendant swinging around his neck. Looking pissed off and beautiful. (Pete, that is, Baba looked serene and beautiful--!)

(this pic is from the following night, because Roger wore a shirt that read "George Davis Is Innocent" the night we went.)

During "Won't Get Fooled Again", towards the end, I had the oddest sensation of going out of my body, feeling whole, and happy with more than a hint of blissfulness. "This is what it must be all about", I thought, 'this' being the feeling of pure ecstasy, 'it' being the meaning of life; and achieving that feeling, that state of mind. I was drug free, during this time, I should mention. Years later I would read about other people having a similar experience during Who concerts, of being "transported". Although it didn't last more than a couple of minutes, everything seemed to change inside me and I knew I was going to be alright.

A couple of weeks later, there was a public bus strike that went on for a month. My family didn't have a car. My school was clear across town. It was a month long vacation from school. I spent it listening to music, walking to the public library and taking out the Baba books they had: God Speaks, Avatar by Jean Adriel, Listen Humanity. The more I read, the more I was drawn in, and what Baba said was more satisfying and made more sense to me than what I knew of the Church, on an intellectual level, yet my gut was telling me I'd found what I was looking for, on a spiritual level. I considered myself a Baba lover, and the "honeymoon phase" (as some followers call it) began.

Happy New Year!

Had a quiet new year's eve with my husband and our dog. What a change from years past! I must say I don't miss all the partying and excess, whew, some of it was fun, but been there, done that. By God's grace I've survived to say that!

Before Christmas was a bit stressful but very nice once the family gathering occured. All my immediate family (sis, Mum and Dad) live here, and also in attendance was my sister in law (her husband is serving in Iraq, soon to be home in February) and my Godmum, both of whom have had a rough year. My sis in law was diagnosed with skin cancer in its beginning stages last December, and she had surgery in January. Considering it was on her face, and the size of incision, it has healed beautifully, and she is well. (Wear sunscreen, everybody!) Godmum was diagnosed with breast cancer at the beginning of '05, again in an early stage, and surgery proved to have been successful. She is in advancing years, and had a nasty fall a few months ago, but she is as spirted and independent as ever.

My sister gave me the Tommy/Quadrophenia live DVD for Christmas and I watched it all over the past couple of days. Christmas and the Who have always gone together for me. As a teenager I would always ask for anything I didn't buy or couldn't afford to purchase during the year, so I always got a lot of music. I got "The Who Sell Out" in '75, and even now, when I hear it, I think of Christmas and the first time I heard it. I was floored most especially by "Sunrise" and "Rael". Still am. I also got Pete's "Who Came First" LP. One Christmas (maybe the following year) I got most of John Entwistle's solo albums, and my sister and I would nearly fall over from laughing at the lyrics. ("Peg leg Peggy, she really knows how to dance....she sounds just like a sewing machine....")

Anyway, watching the DVD, you woulda thought I was 15 again, I was dancing about all over the house, singing at the top of me lungs, admiring Roger's voice (and muscles!), Pete's gorgeous eyes, guitar playing, Simon's incredible voice on "Dirty Jobs" and his guitar work (my only complaint: not enough camera shots of him). John's seemingly effortless approach to kicking my butt with his bass...Zak's brilliant drumming...etc! I was going from being attentive, thoughtful, musically appreciative, to mental Who fan and back again. As well as flashing back to what an impact the music made on me as a teen, particularly Quadrophenia. "This is EXACTLY how I feel!" And feeling like I must have been the only girl in my school (or the world, for that matter) who felt like that. It was interesting and I was a bit surprised to realise that although the album had described my state to a tee for many years, I didn't feel the same way now as I did then. It didn't describe me now. And it was different, but that's okay. Not a bad thing! I am not the same person now, but I still cherish and love the music and how it got me through many a rough spot, consoling me, validating my teenage angst and insecurities. ("But I'm One!")

Now I'm a boring, drug free, employed, happily married old fart with a hip replacement. !!! Amen!