I have been having some serious issues with my bones and joints post Taxol. They ache day and night. A real deep down, don't-you-forget kind of pain. The kind that makes me need to sit down during the day and makes my forehead perspire if I can't. The kind that makes me have to silently, stealthily steady myself upon standing after I have been off my feet for awhile. The kind that is making me use my left arm more and more because my right shoulder won't rotate or reach sometimes. The kind that makes me have to step downstairs like a toddler when they are feeling weak and I'm afraid they will give out.
This is hard to swallow for a used-to-be-before-treatment hiker and outdoor's lover. I cry about it. My dream was to hike the Pacific Crest Trail, in segments, over a few years beginning in the spring following my 60th birthday. And then I was diagnosed the next month and that dream evaporated like dreams do in the stark light of day. Especially when we startle awake. I cry about it and I have come to peace about it. I think I mostly cry because of the everyday interference in my mobility.
I spoke to my oncologist about it last week and he told me to take a diuretic. I didn't feel heard at all. I began taking L-Glutamine again. I took it during treatment and had no side effects. It seems to be helping a little bit already. And next week I begin physical therapy. That too, should help me regain my strength.
So all that whining was my preface to telling you about yesterday morning. An online friend wrote this amazing account of how he decided to take hold of his COPD by addressing it directly, feeling the discomfort, and asking it what was the message it was trying to get across to him. I've been working 24/7 this week because my employer is away on a business trip. They live in a beautiful area by the bay, right outside the gate to China Camp State Park. I have taken my little charge exploring many times in the hills and along the shores in China Camp.
After I dropped my little nanny guy at school, I took myself on an adventure of exploration. I was very inspired by something I read the other morning, written by an author online friend of mine, Ted Slipchinsky. He wrote in part:
"Yesterday I decided to "walk the talk" and apply some of the principles I put in the book that I am always babbling on about (because they have worked so well for me in the past). I lay down, closed my eyes, and decided to experience this God-awful continuous urge to cough in the fullest sense possible. I know this sounds counter-intuitive. I had been cursing out this urge for days, feeling sorry for myself, Googling the symptoms of COPD, and bemoaning my fate. But yesterday I decided to breathe very deeply into the sensation and completely surrender to it...
I drove to the park thinking about my legs, and how I was always so grateful that they were so strong. My strength was there, even though my upper body was less hardy. I used to marvel at what these legs could accomplish. So in my mind and heart I spoke to them. I thanked them and told them I was so sad that they were changing. I asked them to please let me know what it was that I was to learn from this situation. basically that is what I said (but in a lot more words). A prayer. A meditation for my body, this vessel carrying my heart and soul. I accepted the pain. I planned to hike and explore anyway.
And then my answer came on the car radio when the silly little tune Nobody Gonna Break My Stride came on full volume. hahahaha It made me smile. It was a beautiful hike. And I'm going to keep on in this fashion until I am strong again. Thank you Universe! Sometimes you make me laugh...
Oh my goodness (funny I chose that opening phrase - ha!) I feel as if I need to clarify my last post because it seems to be misunderstood.
I celebrate all the goodness in the world and more particularly, my life, every single day. I LOVE life and I love living it. This is not about my life. It is about one man who has betrayed me endlessly through out this life. Who always said one thing and did another. Who spoke pretty. The greatest disappointing lie happened during those days I was dealing with cancer treatment. The posted song and the words written to go with it were directed to him (no, it's not stevematts )
I know this guy reads my blog, and thus it was how I chose to say this to him:
"There is fiction in the space between
The lines on your page of memories
Write it down but it doesn't mean
You're not just telling stories
There is fiction in the space between
You and me"
And so be it, my friends. Putting this one to bed and it feels good.
But me? I am doing GREAT. Thank you so much for caring.
The other morning after I dropped little nanny guy off at school I took my car in to have it washed. And I really realized that I can be a nightmare when it comes to cleaning. I don't think I have been to a carwash where I didn't call them back to clean something a little bit more. I even warn them with a smile at drop off, "I'm very particular about my middle console. Please be sure it is cleaned well." What I have noticed is that though he assures me it will be, by the time my car has gotten to the end of the line where the interior is being tended to, it's a whole new crew of folks and my message has been lost in the ethers.
I'm not a neat freak by any means. I don't mind disorder. Clothing on the chair. Art projects strewn about. EVEN the dinner dishes waiting until morning (as long as they are rinsed and stacked on the counter:) ) But it has to be clean disorder. Bottom line, if you say you are going to clean something, someplace, just do it right. Half assed cleaning is like nails on a chalkboard.
So here it is. Proof that they did a half-assed job. I rewiped with the little wipey they left me. The guy so kindly went over it again after I showed him. But no, they did not get a tip. Sorry guys. I don't tip just because, I tip for great service. And if my service is great, it's amazing how much I tip. :)
Righty Tighty, Lefty Loosy. That's how my dad taught me to remember when screwing something on or off. This morning my head is so full of thoughts I just want to unscrew it and place it on the windowsill to look out into the beautiful sunshine for the day. I want a day off from thinking. I'm trying to organize so many things at once I feel pressure in the front of my forehead. Not one cancer thought actually. Just thoughts about my kids and what is going on in each of their lives. And thoughts about my life and how I want to live it going forward from cancer (I guess that could be considered a cancer thought, but not really. it's a moving away from cancer thought.) I've already mediatated and pulled a tarot card. Daughter of Pentacles. Talked to two of my kids and tried to shop fabric online. I made french toast out of the seed and nut loaf I made last night. And drank a cup of yesterday's coffee. I have soothing music playing and will get up and wash the dishes soon. I cut a daphne from the blooming plant outside my bedroom door and put it in a vase in the bathroom. I want to go to the city, and I want to do some art. The laundry pile is daunting. I love my new wallet. And my new sheepskin slippers. I should vaccuum. I love garlic. It's supposed to be beautiful weather today. There is a very loud duck out on the creek - I want to go say hi. I have those gift certificates, I should go get a massage or a pedicure. Tonight is Fiona's birthday celebration. I need to wrap her gift. I want a dog. It's almost noon. I gotta get out of here into the sunlight.
See what I mean?
It was January 3 of last year that my biopsy was performed and I was diagnosed with breast cancer. It has been a long year of surgeries and treatments. Hair loss. Weight gain. Nails lost. Skin changes. Scars and burns. Looking in the mirror and wondering just who was looking back at me.
Vivid dreams. Deep love and deep lonliness. Commitments and betrayals. Joy and tears. Disappointments and surprises. It was a whole bag of tricks all tied up and shaken around. I was raw and clear-sighted. What stayed intact was my love of life. I'm not afraid to die, but I'm not ready now. I love life way too much to leave it yet. And my sense of humor. The words, "You're so brave" are what kept me going. I was brave. And now I'm coming out the other side!
Here is my year in a collection of photos I found. I don't have a lot of words to share today, but it is important to me that this day be marked. Noticed.
Some of them are graphic. So be forewarned. For my sisters whom I have connected with walking this journey with me. Women who want the truth like I did.
My last radiation treatment was on December 8. Today I am still healing from radiation burns. I am getting my body back into some state of equilibrium and preparing for my hysterectomy on January 21. I complete the trial drug Herceptin in April. I take Arimidex daily to keep my estrogen levels down.
I'm back to work.
And so it is.
And here I am. :)
I'm reading Steiner, dreaming through the Holy Nights, lighting candles for God, the Universe, Virgin Mary, Saint Jude, and Archangel Raphael. I'm listening to Bob Dylan, Tracy Chapman, Gregorian Chants, loving the new Pope and laying out my New Year's day tarot cards. I'm praying for me and I'm praying for you. I'm praying for the homeless man who was throwing up on the sidewalk the other day. I'm blessing the World at large everytime I think to. I'm purging my closet and honoring my inner Buddha. I'm savoring Mary Oliver's words and walking through nature. And that is what a lifetime does. It takes bits and pieces from many places and practices and creates a whole package, a one of a kind soul. And this one is me this New Year's Day, 2015. Namaste.
I'm so sorry it took me so long to update. Starting back to work and then struggles with radiation kept me distracted. Things are smoothing out again. :)
Yes! Little baby girl was born early Thanksgiving morning. She was welcomed, at home, in a warm birthing tub, by her mama, papa and 2 midwives. 10 pounds 5 ounces, 23 inches.
Her name tells a story. Mare (me), this little one was born in this Year of the Horse. And Alba means Dawn (her other grandma's name.)
The picture the story holds is that of a little mare running at dawn, across a beautiful lea to the call of morning birds.... I'm over-the-moon she was named after her two grandmothers and a moment in nature.
We are all in love...again.
My son Alex doodles these little folks everywhere. He calls them Creepy But Cute. So I found this particular doodle on my calendar.
I had the fun idea to surprise them and make it into a doll for their soon to be born baby girl. It's a little scary maybe, but she will grow up with his doodles in his artistic menagerie. And there's something about the personalities you feel from this band of cute creepies. They are full of mischief and very sweet.
But being the forever Waldorf kindergarten teacher there are styles of dolls that I love and find dear So I had a project here! To take what I love and blend it with what my child loves for his child. :) Combining a silk and cotton Waldorf stye knotted doll with a Creepy But Cute mischevious one! The fabrics are all natural: cotton and silk. And the head is stuffed with 100% wool batting. And then I drew the face, just like one he drew, on muslin and embroidered with monochromatic deep red embroidery floss (six strands) like the olden days. The doll itself is a simple knot doll for little grasps.
What a fun project! And here she is!
My head is full of grandbaby preparation. I was in The City at Ghirradelli Square over the weekend and there was a woman doing henna tattoos. So I had the symbol for Year of the Horse tattooed on my wrist, right by the red cord that was put on everyone's wrists at the baby shower - for us all to wear as our community surrounds their family in wait until the baby is born.
And what else? Some dyeing of cotton clothing, and embroidery and applique.
And finally, burp cloths! Cotton diapers dyed pretty with a panel of soft flannel sewn down the center for her little face. These you see here are folded in thirds, but are actually a full "prefold" sized cloth diaper.
And that's that! I am having a LOT of fun! Baby girl is due November 21.