the sisterhood of the traveling scarf spreads across the world

Having started spreading happy and color through my scarves here in NJ, the sisterhood is continuing to spread across the world. As my son says, I have friends all over the world. Sometimes I don't realize it, but it is true. So scarves will be going through NJ, to NY, are already in Arizona and California with more to go there. To Texas and Florida. To France, to Finland, to Hong Kong, it is really quite subversive, to know that scarves are being worn all over the world that I have made, due to cancer, but still spreading positive energy, spreading happy and color, spreading good works wherever those scarves and women go. D. asked me how many scarves I had made. I was thinking about 30, but now, after counting the number is closer to 50 and keeps growing. An umbrella of color and scarves across the world.

the wildness of hair

I spent so many years trying to tame my hair, style to look professional, blow it, iron it, clip it, tie it, always a battle but still knowing that I was lucky to have thick beautiful hair, lion hair as my husband called it. Like every woman who is told they have cancer I cried about my hair, cried when I cut it off, mourned it, bought a wig and expected it to fall out. As we know now, mine thinned but never fell out completely, waiting for me like a tease, teasing me about what it was and what it would be again if I lived long enough. Now, it keeps growing and keeps trying to fill in and it is wilder then ever, not really curly in the way it used to be when I was younger the beautiful soft healthy curls, but it is grey and wild, in a way that seems it can't be tamed, when I try to straighten it, it refuses to cooperate as if to say I've had enough, give it up and let me be, let me be free as I have suffered to through your illness. Forget taming me, like you can forget taming cancer, it can't be done. So I let it be wild and free, with a little hair spray and it is what it is, like me.

Still living by the numbers

numbers - was always not very good at math thanks to a form of dyslexia which caused me to reverse numbers and wasn't diagnosed until I was 30. Once I realized the problem I found ways to work around it and wasn't so afraid of math and numbers anymore but know I can't think numbers when I am tired or distracted, but love numbers to break things down, to really present things in a way that matters. So here are today's numbers: 29 - my CA 125 - at 29 back in normal range again after five treatments, pretty amazing. 24 - how many chemotherapy treatments I have had during the last 18 months 58 - how many times they have stuck me (through the power port) for blood, chemo, ct scans and so on. Thank goodness for the port so I don't look like a junkie with track marks in my arms and collapsed veins. 3 - haircuts since diagnosis. 1 to cut my hair off thinking it would fall out and 2 to shape it while it grows back 0 - times I have colored my hair since this odyssey began 31 - that is the median number of months for overall survival of stage 3c ovarian cancer. at 18 months I am well past half way, but not really believing that I could be dead in 12 or 13 months. that doesn't seem real to me since I look good (as everyone tells me) and I feel reasonably well in spite of exhaustion etc. 20 the number of years I practiced law until diagnosis but that is finished now, over and done. maintaining my licenses but definitely too sick to work.
50 the number of scarves i have made since diagnosis.
3 the number of blankets I have made since diagnosis.
4 the number of needlepoint pillows I have made since diagnosis.
will have to come up with some new numbers soon as these evolve and change.

Hoping to stay alive long enough for miss pac-man to save me?

Seeing this story on CNN a few weeks ago created a mental image for me I can't get rid of - waiting for nano-particles to be created to deliver the anti-cancer treatment directly to the bad cancer cells leaving my healthy cells healthy. Brings me to thinking about a little miss pac-man type cell eating up all the cancer cells, chomping through my body, finding all the cancer cells and leaving me healthy again. I so want to be healthy again, tired of being sick, of all the side effects of medication, limitations on my life. My desire for a steaming hot cup of starbucks de-cafe cappuccino with steamed low-fat milk is overwhelming, something I can dream about, and get jealous about when I see others drinking hot liquids, so hoping the research that is ongoing since 1974 becomes prime-time soon before my body is damaged beyond repair.

Happy depressed

My husband often asks me how I am. Can I be happy and depressed all at the same time? When I was young I definitely knew depressed, as I was depressed and angry, having grown up in a dark angry unhappy household. Took me a long time to find a smile and laughter. Lightness and air to breathe. After my father died I started to write a dark angry hostile novel about it, but found it was taking me back into that dark depressing world. So I hit the delete button and vowed to write only happy things that make people smile. So, sometimes I feel yes I can be, happy to be alive and seeing my son spread his wings and fly, to do what I raised him to do, and be the best him he can be. I am happy to wake up in the morning and be alive. I am happy that I have a wonderful loyal loving husband who is my soul mate. I am depressed that I wake up to cancer, to not working, to the daily grind of being a professional patient, and knowing that I will likely leave my son and husband behind sooner than I planned. So there it is, happy depressed.

Regrets

Regrets, I've had a few. But in the end I did it my way. Keep thinking about that song and knowing that I don't have many regrets. I have lived a good life. Been an above average parent. I am not perfect. I should have cut ties with my family years before I did, but I kept it going until my father died. I suppose I kept thinking it would all work out and if I improved as a person, I could improve the entire situation, but it was one that only spiraled downward and could not be fixed, or at least not by me. So in the end I did it my way.

Professional patienthood

Having now been through 23 chemo treatments, five of doxil/avastin, it is exhausting to manage symptoms and side effects and try not to have them. Although I thought I would done with the next treatment, I've now been informed that the treatment is working so well that we're going to continue indefinitely, until it stops working. So we will continue icing my hands and feet, feeling hostile everytime I see someone drinking hot coffee because I am not unless I want to suffer from mouth sores, and wearing clothes or shoes that I no longer wear because they are not comfortable, too tight, too irritating, and feeling constantly tired. Having a limited half-life and sometimes even less. Days trapped in the house because I don't feel well enough to go out. Finding shopping overwhelming, especially certain big-box type stores. Having to walk out of walmart one night knowing I couldn't walk through the store. Glad to be alive and still waiting for science to catch up to me.