Happy Independence Day

Fair warning, I’ve been working on this post for a few days so it’s a little extra long…

When I was pregnant with Michael the summer of 1989,  Mike and I lived 1/2 block up from Alki beach. It was a blessing to be able to waddle down to the beach, 8-9 months pregnant, on the hottest of August days and catch a breeze. It was a perfect world to have all of Alki to walk and take time to be grateful, to reflect and to plan. At some time during that summer I came upon a word. I don’t know where I found it or who gave it to me but it has been a word I have savored and benefitted from ever since. The word is Open. I clearly remember walking on the beach, in the salty breeze doing some self talk, visualization, meditation and using the word open as my mantra. I used this word very liberally. I used it to mean and to visualize (TMI ALERT) my cervix opening gradually for this baby to emerge. I thought about it as my own state of mind to be ready and open for what ever this baby may offer in gender and temperament and all the other variations on a baby theme. I visualized Mike and I being open, together for this next amazing experience.

Then I had a baby and then another and have no idea when I ever might have had the time to think of the word OPEN again! But I know it flowed in and out of my mind over the years.

In the summers between teaching I typically spent a good deal of time reflecting on the past year and planning the next year. More than one year the word OPEN would not leave my mind. Through my curriculum and time with kids I found the word and concept very appropriate. “Our hearts are open to new friends, to giving and receiving kindness, to giving the benefit of the doubt (always a tricky one!). Our minds are open to consider new people, new friends, new ideas, new challenges, new points of view. I am open to the idea that I can do more than I ever thought I could! With open hearts and minds we are more relaxed, calm, in control of our own body. I compared an open heart to the Grinch’s tight heart which made him unhappy, jealous, angry. With open hearts and minds we can build a more peaceful community.

One year I had a little girl named Molly. Her dad was an artist and she and her dad painted me a beautiful “thank you” piece. They nailed a large cut metal heart onto a painted blue piece of wood. All over the blue in different sized letters in pink and white they painted the words “thank you” over and over. It is a treasure to me. In addition that same year her dad had some of his work on sale at Hot Wire Coffee near the post office. Mike and I went in there and there was a small block of wood, painted red, with a pounded metal heart in the center and the word open painted on the heart. This piece spoke to me and Mike bought if for me. It has been in our kitchen windowsill ever since. It has been a reminder of grounding me to what is important; having an open heart and mind. It helps me relax, be more patient and of course reminds me of Molly and so many of my teaching experiences.

Now I am calling on this mantra again. This is a new take on the concept. I am open to a miracle. I am open to staying alive as long as I can, to moving toward health. I am also open to the possibility that I am dying. I am open to talking to my family and close friends about death, dying, fear and courage. I am open to help us prepare for my death; physically, emotionally, spiritually and honestly. Our society is not known for facing this head on. If I was taken quickly in some kind of accident I would have nothing to do with this part. As hard as it is not really knowing what is going on in my body or how long I might be here I am grateful that I do get to be here for this part. Now that we are at this place I can’t imagine leaving my family with all these details and decisions. And I actually appreciate having this opportunity.

Don’t get me wrong, I have not nor will I give up hope for a miracle. I know they are real. It could happen to me. But in the event that it is not in our cards I am trying most of the time to keep my head out of the sand. To being honest and real and present. And, also of letting myself stick my head in the sand when I need or want to.

I’ve had some good days lately. We’ve had lots of folks coming by for visits but I am also learning to put up some clear boundaries and learning to protect myself. Friday I was joking that I put a hex on our house and would let no one in! Mike and I had a few easy tasks to do out and about and a few things to do here. It was good to have just the two of us for the day. Saturday ended up being more like a spontaneous party from 10:30 am to 9:30 pm! That was great, too. It’s a balance. I’m trying to honor my limits and having quiet time alone, or just Mike or Mike and the kids and the circle of friends out from there.

But now we have another hex in order to have time to get ready for the relatives. Mom, Matt and my niece Jennifer fly in tomorrow evening. My sister and her husband on the 6th. On the 7th it is Lucy, Abbe and Jamie. In all I think there will be 12 visitors, from Kansas City or Boulder though not all staying at our house and many are coming and going in just a few numbers of days! I’m really looking forward to spending time with my family, especially since I am feeling a little better. My mom will be here and that will be the most difficult. She loves denial and this is a little too much for any momma to bear. I am being honest with her, but mostly I have to be gentle. I can’t imagine being her.

Yesterday Mike and I went to see Dr. Standish. She is clearly pleased that I feel better, really that is her role, help me feel better. A combination of getting the taxol out of my system and getting good stuff in, along with prescription drugs to help with my shortness of breath and coughing, it all must be helping! She also said she has never had a patient face death quite like this; so honestly and head on. It took some dark days but now it feels natural for me to think about plans around death, dying and what happens around here after that. It’s feeling natural to think about it, but it is trickier to talk to the people who love me. We are working through it.

Through all this we have passed through the 3rd cancerversay. June 28, 2014 was BPOD day and July 1, 2014 was diagnosis day.

Three years with stage 4 gastric cancer, I feel some partial success here. I am so grateful for this bit of energy. I am able to get out a bit, interact with people, flirt with little kids at the store or the beach, have spontaneous chats and interactions with neighbors and strangers…somehow that feeds my soul and makes me feel so very normal. I love that! I love laughing with Mike and the kids and Betty and Carrie and other close friends who have been showing up and helping me get the house ready for the relatives, or bringing us food and just relaxing with us. It’s been really lovely. I am grateful to have a better appetite, to have a little less cough and to have gotten rid of the edema that was so uncomfortable in my legs and ankles. I am also so grateful for this lovely weather, it is just perfect!

I am looking forward to enjoying my family and grateful that they are on a rolling schedule coming in and out of town. They will be gone after July 18 and I will take stock and let you know what is going on then.

Sending you so much gratitude and love for every bit and different kind of support we have received.

Janet and Mike