Hi Everyone,
It's been 4 months to the day since I left the hospital. Am now settled in my new casita, and so very happy here. The backyard is full of brightly colored flowers, the silence is healing, the views expansive. I recognize this place as a definite gift.
There are many gifts -- the gift of free time to heal, do art, read, explore in various ways. Though it comes with a price -- ongoing chemotherapy throughout the remainder of this year and the next -- I am aware, always, at how unusual and special it is for someone like me, an inveterate "doer", to have this spaciousness in my life. It is not always a comfortable fit, as I acquiesce to days of relative freedom on the one hand and the pull to be of service on the other. The irony is that I longed for this space for so many years. Now that I have it, using it wisely, with purpose, is at times more challenging than I expected, especially because my body is not yet ready for any type of prolonged activity.
My life situation has propelled me deeply into the issue of purpose. I had always defined purpose through external activity, largely having to do with helping others or some "cause." Now I am my own cause. This feels wonderful at times. At others, I long to be giving to others, to be creating the next step of my life, to be building a website, coordinating meetings at my home for those dealing with cancer, etc. etc.. Yet life is looking me squarely in the face saying requiring me to be still, let go, and relinquish most all other ambitions for the time being. In spiritual terms, it is a death of the old and a rebirth of an entirely new me -- from my bone marrow to my hair follicles!
Hopefully by the time Fall rolls by, I will be able to have a Meetup group at my home for Cancer thrivers and survivors and begin, gradually, to incorporate more into my schedule....On my "feel good" days, I am finally getting back to my art (it took me these past 4 months to get my MOJO going again!). It's wonderful to be doing this again. Below is my most recent piece.
I had my last (hopefully) lumbar puncture last week. It was a strange one, to be sure. Dr. Polikoff hit a nerve in my spinal column, as my right leg kept twitching painfully. What an ordeal! I say "hopefully" as I read recently that only 10 percent of people with ALL have central nervous system (CNS) involvement at the time of diagnosis but a year later, 75% have it if they don't get proper treatment. I haven't had the full amount of treatment as I decided to forego the final month of treatment with methotrexate, opting instead to have 3 more lumbar punctures. These LP's are not quite the same as the full-dose treatment I would have gotten in the hospital, so I'm asking the Doc if I should have a few more. We'll see. My attitude is "whatever it takes."
Next week I go for IV chemo again and the following week I will have a simple surgery to implant a port under my right collar bone. This port will be used instead of the PICC line I had in my arm for nearly 8 months for administering chemo. It is much easier to have this than using veins and it is a relatively quick surgery.
GATHERING AT MY PLACE
Please consider this a warm and loving invitation to come to my new place on:
SUNDAY, SEPTEMBER 4
4-6 P.M.
This is the long awaited "out of the hospital" celebration I've mentioned a few times in earlier blog entries. I would love to see each and every one of you and to set aside this time in appreciation for the friendship we share. Being on this long healing journey (a year this coming November) has given me a lasting and poignant inner realization that in the end, it is friendship and love that matter more than anything else.
If you think you might be able to attend, please send a brief response to this blog so I know how many to expect.
Little did I know when the picture below was taken (a little over a year before my diagnosis) that life would present me with a unique Labyrinth -- an inner and outer journey with unexpected twists and turns. But such is life for all of us, is it not? The only thing we truly have is the present moment and how we choose to be in the now. I have seen many different sides to myself through the Leukemia that would have otherwise remained hidden. This inscrutable passage has been and continues to be a great teacher. There is no way to be in the driver's seat or to know the end result. I'm sure all of us have this element somewhere in our lives. There is nothing quite like it to quicken the soul....
Sending my LOVE to all of you,
Heidi
