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.