The Great Jewel of Being from my dear friend, Anne today. Yes, Anne, it spoke to me! xoxo
"This Great Jewel of Being"
Far from knowing who I am
I discover myself daily.
All over this body
I find old rocks and ancient wells.
Scars and burns mark
twists and turns along the way
to where dark chasms
and deep oceans open
and to the secret treasure chests
I left for myself all hidden away
so I would find them one day
and remember this...
Great Jewel of my Being.
First day of chemo, done. A bit of a rough start becaue they couldn't find a sufficient vein. Two nurses, several pokes and they finally called someone to use an ultrasound machine to find a deeper vein in my upper arm. That worked. But it looks like I will be getting a port in on March 3. The good thing was, I have no fear of needles. Nada. I think the nurses hurt more than I.
When I was being given the second drug a headache began that came home with me and got progressively worse throughout the evening into the night. And then nausea started (I think from the headache?) but the meds, the arsenal of anti-nausea meds, took care of it.
Three kids went with me to the infusion. One Camille, baby girl sat behind me in the car and played with my hair and rubbed my head on the drive home. Soothed my headached head without any solicitation on my part. :) One Brooke, great mama daughter tucked me in bed and made a big pot of Tuscan Bean and Kale soup from the Rebecca Katz cooking for cancer cookbook, before she went home to her own family and houseguests, and one sweet son Zachary spent the night and set his alarm three times in the night to be sure I stayed on top of my pills. This was my anti-barf brigade standing at the front lines! And it worked. So far so good.
This morning I awoke feeling pretty good. A little off but nothing to even remark about. More birds each day are still singing out there at the creek. Oh and this whole colony of ducks, noisy as can be are carrying on about something or another. I was videotaping the scene because it was very remarkable until son Zak photo bombed it by tiptoeing up, sneaking up behind me and saying in my ear, "Effen Ducks!" sigh And he didn't say effen. He rhymed.
I'm looking forward to a slow day, some long easy walking and fresh air, and maybe calling any or all kids over for a game of rummy tonight? It used to be Jameson and rummy. Tonight, for me, it will just be Zofran and rummy. But hey, I'll take it!
The day I don't want and I do want is rapidly approaching. Thursday I get my first chemo infusion. Of course I don't want it. That's a given. But then I have to remind myself how much I really do want it. How lucky I am to have insurance and great doctors and the opportunity to heal. I just ache for those women who hear this diagnosis that turns your world upside down, and yet they have nowhere to turn.
Today I am preparing myself to be strong. And I am very grateful.
My cancer is "atypical" in the sense that the tumor was not small, and cancer was found in 5 nodes, yet my tumor only stained at a 10%, which is low. Thus I'm classified HER2 low. There is a drug called Herceptin that is given to women with more advanced stages of cancer (staining at 30% or higher) with the intention of longevity. And now they are doing this trial, giving Herceptin to women with my pathology with the hope of preventing reoccurance, "disease free survival." I got the call from my oncologist on Thursday night that I have been drawn to receive the arm of the trial that we were hoping for. So in addition to my standard of care chemo drugs, I will continue on with the other drugs for one year. And then continue to be clinically followed for 10 years. For those of you who understand and want to know my treatment specifically, it will be:
Back I go to Kaiser today (fourth trip this week) to get a new drain put in. The one put in during surgery came out too soon (my own error: catching the tube with my thumb when taking off my knickers!) and my body is having a hard time absorbing all the fluid that my 21 lymph nodes used to handle. I was so happy to be done with that thang! But alas, we do what we gotta go.
Chemo starts on February 19. I went to the "Chemo Class" on Wednesday. I haven't been a student in class in a long time. I found out I still blush when I raise my hand. Ha! And also, I now have my first ever VIP parking pass! Woo! Hoo!
Tomorrow I have to spend the day going through my Mom's things, at least what remains at Shannon and Isaac's house. Thinking ahead, because with foresight it looks like I'm not going to be full of the energy to do this once July gets here, and Shannon and Isaac are moving from that house, and I'm just finishing up 18 weeks of chemo....
Today I called a wig maker in Sausalito to inquire about using my own hair to make a wig if I wanted to. I'm not strong on the wig bandwagon, thinking bald is beautiful and scarves and hats are fun and fine, but just in case I get weary of those things 8 months from now it would be good to have the option. I certainly have enough hair to do it! I will be meeting with her next week for a consultation.
Speaking of next week, I am going to go back to work for the week. My employer has a very intense work week himself so I am going to cover for him. I agreed to do this before I knew of the need for the second drain, so we'll see how it goes. My schedule is light - but the commute not so light. It is an hour each way, plus another one to two hours on the road schlepping child. Aye yi yi.
That's about it. Rain is falling. Lovely welcomed rain. My frig is full of beautiful organic veggies from sweet Jerome at the farm where Alex has been working. I've been having great fun making valentines. And other than my right jug-less chest cavity sloshing like a water jug I feel great!
I remember being a child and driving up Crystal Springs Road with my mom. I asked her what the weather was going to be like that day. She told me, and then I remember her saying, "You know what? You should be a weather girl when you grow up! I've never met a child who was so interested in the weather!" I was. I loved each new season with a passion, and found it all so very exciting. Many of my memories are weather related. Not that the weather was the focus, but it definitely played a big part in sealing a memory.
Weather has a variety to it much deeper than what touches the skin. It is a sensory delight. Spring reached sense of smell in an obvious way. My dad was a great gardener, and come spring, and sunshine, and billowy clouds and bluest skies the backyard exploded with flowers. And my dad out there in his overalls on his hands and knees covered in a film of dirt. My favorites were the dancing ballerina fuchsias that hung everywhere. Or down below on the lower side of the house (we lived on a hill) planting his garden that called out to summer to take notice.
Summer was quiet. It was still and peaceful and the air was warm and a bit thicker and it just held you. Shorts, and sleeveless shirts, and the warm sun dressed your bare skin on those summer days. While I was growing up in our little San Francisco suburb of San Bruno, the world slowed down in summer. Less coming and going. Nowhere to get to but a neighbor kid's doorbell, a Wednesday Kiddie mattinee, the town pool or Albert's Market for a pocketful of penny candies. And summer was long. A full three months off of school.
Autumn memories are blustery for me. At its start, warm wind with an undertone of chill increasing daily. And as it moved toward Halloween the sunny days turning to clear, crisp nights became apparent. And then the frost came with the pumpkins and the turkey, and the big family gatherings.
And my favorite! Winter! The trips to the mountains where my parents always had a vacation home of some sort, and the snow! I am a snow lover. I don't ski, I have just always been happy to sled or tobogan, or snow disc. But the cozy part! I can feel it down to my belly right now even as I write this. Being inside when it is freezing and wet and cold out. Being in with friends and family and good food and games or a book. And a fire. And soft slippers. This is my idea of heaven.
It rained a lot in winter as I remember. I have one particular memory that lives so strongly. It was Valentine's Day and I was a young mama. Shannon was a baby and Brooke was 4 years old. Raining cats and dogs. "Comin' down a turd floater" as my dad used to say. We picked Brooke up from nursery school around noon and headed to the little bakery in Mills Park. It was cold and the rain was pouring. And the three of us parked at the curb and I carried Shannon and the umbrella in one arm and hurried Brooke along with my other hand. Rain boots, rain coats, all of us laughing. We entered that door and the warmth was immediate. A still, comfortable warm air filled with sugar and flour baking. We picked a very special dessert, hearts full of Valentine love and the special dinner we were going to have ready for their daddy when he got home from work. It was all so simple. So happy. And so wonderful. And it was raining. Cats and dogs.
All these life events that spring out from my memory bank swirl and center around nature. And that is how I roll.
So this morning there is glory in the face of the current California drought. I woke up around 5 am and I heard it. I just knew I could hear raindrops outside. I laid there still, waiting for a car to pass down the road so I could confirm it. And there it was, tires swishing down wet pavement. God bless you Universe for raining down on our parched state.
It's a beautifully dark Sunday morning. I have lamps lit throughout the house even though I'm not really in those rooms. I do this. I feel like ambient lighting is a gift to the outside world. Folks driving by. I hope that they get a hit of cozy and it goes right to their hearts. But here I am. I'm in bed with the curtains pulled back wide open, the bedside lamp on, a cup of tea and a good book. I'm under my down comforter and I have a freshly filled hot water bottle at my feet, and the sliding door opened so that I can hear it ALL. The birds out there are happy too. The bigger ones. I hear them, the ravens mostly. The loud, funny ones that always seem to tell a joke and make me laugh. The tinier birds, who I usually hear each morning aren't out there this morning. I think they are snuggled in their feather lined nests with their own little ones. Feeling cozy.