Dear friends and family,
On May 5 I fell and broke my hip, had surgery on the 8th and have been healing very well since. In the big scheme of things this fall was perfect. It took me out of the "driver's seat" both literally and figuratively. After a few days of complete bewilderment that this had happened at all, I began to see how things were fitting together for deeper learning about surrender and trust, and even some relief came in! No longer was I so "tunnel vision" on my Leukemia treatment. This focus has been so intense at times. Now some larger issues were forming, quite on their own, and these gave me a larger view of the whole -- the experience, again as in last summer. of more dependence on others to help (i.e., less "independence"), pain like never before, some very unusual viewings or visions of the non-physical world -- drug induced or otherwise, they were magnificent! I began to relax and let go more, little by little. While my choices for outer activity became smaller, my inner choices (thoughts, state of being, meditation, etc.) became larger. My brother Greg flew in from Madison, WI to help out. We grew even closer. Peter was so helpful, as always... and stayed with me last weekend. Friends came with hearts of giving and friendship.
And some good news yesterday, while there does seem to be some cancer involvement in my pituitary gland, my White Blood Count and Cytology are both normal. If not for the pituitary (a hard place to reach for the chemo drugs) I'd be in another remission. I feel I'm getting closer to one of the supreme purposes of this illness, and that is trust and surrender. Something shifted with the lost wallet and lost ability to drive and it feels like a good shift. I've seen that with more choices, the tendency to want to control, at least for me, is stronger. So cold energy treatments had to fall away too. I saw that holding on to this particular thread was so very important to my feeling safe. When it fell away, it opened me to the greater Reality that God can heal through any method, or with none at all. I began to let the currents of life pull/push me along the swirling river. I can see and feel the rapids all around and there are a few waterfalls ahead. But all I can do is relax in my little raft with a prayer for peace and acceptance in my heart.
While cold energy fell away, chemo came in closer. Peter has been in touch with one of the world's greatest experts on Leukemia, who works at the City of Hope in LA -- Dr. Stephen Forman. Dr. Forman wrote back to Peter several times. A very kind and caring man, saying he feels I have a better than 52% chance of a cure through a bone marrow transplant and a much smaller risk of death than we heard about last year -- 5% rather than 20%. This made actually doing the procedure more feasible to me and we've been taking steps in that direction, though a final decision hasn't been made yet.
I've been on this journey for 2 1/2 years so have been "here" (in full or fragile remission) several times, only to relapse. It feels like Spirit is leading me with a little more umph to do something different. Am doing my best not to get caught up in the analytical mind (necessary too, but alone cannot possibly know what is best at this juncture). Left alone, the cancer may come back as before, affect my optic nerves and cause peripheral blindness and eventual death. Can doing only cold energy (along with supplements) cure me? For some reason it hasn't, though I attribute it as the main reasons I'm still here. Should I go into the hospital, as the doctor suggests, and have about a month of high dose chemo? The last time I did this chemo combo I barely made it. I was so out of it I couldn't recognize myself in the mirror! Going in for a month is a requisite for a BMT at City of Hope and even then, they may not feel I'm a candidate. It all depends on what happens in the pituitary. Conventional chemo doesn't seem to be able to get in this small gland at the center of the brain. Radiation of the pituitary would get the cancer there, but I run the risk of much more serious side effects, including dementia, in about a year from now. That is unacceptable, however small the risk may be, since I'm putting quality of life, and not mere "survival" as my top goal (other than a complete cure of course!).
There is no way to go about these decisions from the mind alone, and no one can tell me what is right. I have to do the walking alone, with my loved ones surrounding me and cheering me on!
"Waking alone" is such a profound journey. Excruciatingly painful at times. Lonely. But there's nothing like it. Once you think you're there, another rug comes out! Oh the subtle ways we cling to the known, to answers outside ourselves, to others to show us the way. Maybe most of you have learned these lessons, but for me, life needed to put them front and center. I could not have imagined myself in this place 2 plus years ago, but on my better days, I can see that it's Grace that has brought me here.
Sometimes life comes as a thief in the night and slips on those solitary moccasins unseen. It's not that Life is doing anything TO me, but rather partnering with me in a much deeper way than before, or maybe I'm accepting Life's hand with greater ease in its invitation to Dance to new music. I'm unable to gather comfort in the familiar things I had going even a month ago, or grasp anything certain. Like air, everything slips through my fingers when new facts or figures or statistics come pouring in week after week urging new decisions and deeper levels of acceptance.
Is it worth struggling against the tide? Not anymore. Will I struggle again? Probably. It's my relationship to these imperfections, to my self in its entirety -- especially the parts of me are scared -- that is paramount. It's about deepening self awareness.
A wonderful woman and author, Kathleen Singh, who wrote "The Grace in Dying" told me about a spiritual practice the wife of a well known Buddhist author, Stephen Levin, does. She learned she has cancer several years ago. Every morning she puts her hand over her heart and for 15 mins. she pours the deepest self-compassion into her body/mind/heart, as one would touch or hold someone in deep suffering, or a small baby or animal needing love. We're not perfect and our imperfections are to be loved, not shunned. Included in our journey, not whipped into submission. My occasional fears are just messengers of where I'm holding on to the separate sense of self. Mentally pounding them away only makes then go underground and doesn't integrate them. At least that's what I've been learning. It's a fine line because sometimes I'll indulge in the tears....but on my better days I see them like clouds passing in the sky. I watch them roll in, feel their rolling thunder and release of rain. A short time later, a day later perhaps, I can see a new vista.
I would especially like to ask your prayers over the next few weeks that I become more attuned to the subtle whispers of intuition as I go forward. Thank you from the depths of my heart for all your love and support.
With love and appreciation for all you are to me,
Heidi
