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Saturday, October 12, 2013
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Friday, August 16, 2013
A long overdue update
Dear Friends and Family,
My life has been quite a ride in the last few months. In addition to the broken hip in May, now mending, but not entirely, my entire house flooded (with 3 inches of water) and all the floor had to be torn up. Rugs got ruined, my favorite art fabric had to be thrown out, as well as curtains, etc. because of the real possibility of mold, which I can't tolerate due to health issues. I've had chronic sinusitis now for going on 5 months and the new chemo is giving more opportunities to cope with nauseau. Am staying at Peter's until we can figure out the next steps, one of which is possibly moving from my beloved sanctuary on the hill -- all during a time when I was hoping to quality for a bone marrow transplant.
A friend of Peter's recently wrote him with this pertinent and funny question: "When are the locusts coming?" I laughed when he told me that because sometime it all seems so outrageously "too much." After two Hyper-CVAD treatments (intense chemotherapy requiring hospital stays of around 5-6 days), and weekly intrathecal Ara-C (cytarabine) we have not been able to control the ALL in my CSF. The flow cytometry from this week showed a small amount of leukemia cells which continue to disqualify me from having a BMT. When I found this out yesterday, I was devastated. I hadn't fully realized that I had put so many "eggs" in this basket. The transplant, as I understand it, only deals with the bone marrow and I haven't relapsed there, thankfully, in almost 3 years. However, the cancer in my CSF continues to be aggressive and very difficult to eradicate. I now face trying radiation to my brain and spinal column. This next "deeper" step (in terms of side effects) concerns me greatly. My oncologists tell me that Leukemia is very sensitive to radiation but it also can bring dementia (in about a year) when administered to the brain. It feels very risky to me as I weigh the "cost"/benefit of new invasive treatments against the probability of becoming eligible for a BMT which is also very intense to the body and there is a 5-10% mortality rate with that in itself. Most "alternative" methods either don't cross the brain/body barrier or they are simply not strong enough to eradicate cancer in the spine and brain.
So, I'm again at a crossroads facing life and death decisions. I could go back to cold energy which showed objective evidence in getting ride of a lot of the leukemia cells, but not all of them. It is infinitely kinder to the body and it could extend my life or would at least give me a better "end of life" experience, if that is to be. Meanwhile, I continue to fight on, while trying to be in a place of acceptance and Grace. Peter and I meditate and read together from deeply inspiring books of wisdom and love. In the depths of me I know we will all face, in some way, the very same journey I am facing now. I just didn't expect it to come so soon. If I had my way, I would stay here for another 10 or so years, at least, so I could learn and grow in my soul as much as possible -- in my faith, surrender, inner peace and awareness of the True Self. It is sometimes easy to look back on our lives and see primarily the deficits -- the lessons still unlearned, the unkindness and judgments, the missed opportunities. But as Kathleen Singh (the author of The Grace in Dying) told me yesterday, I (we) have already carved out so much good through our positive efforts in this life. They are already there in great abundance. I think of my attachments, which in traditional Eastern philosophy are the roots of reincarnation. Kathleen offered me a new perspective yesterday that was so helpful, saying I can change them instantly into appreciation. So I've been practicing this and it is helping not to judge myself for still loving the smell of pine needles in the sun or a cool breeze or a yummy desert.
Yogananda said: "God is all the love of all the lovers who have ever loved." As I sit here this morning and so many mornings in recent months, I can't say I feel that overwhelming love. But I can say that I have felt the warm, comforting embrace of love through my friends and family, and my dear Peter. If that's not "God," what is? We swim in the ocean of love looking for water when it is all around us, felt or not. Sometimes this is just a "belief" but then I remember times, moments, when I was touched by love without any cause or intervention. Yes, there have been those moments too. While I pray for them now (I could use the reassurance!) I remember the lives of great souls who were not given consolation in times of need, yet they lived their faith in spite of it all. These examples, and so many more of people who are suffering far greater than I, are powerful helpers on the path my life is taking me.
A friend sent Peter a video yesterday of a beautiful young woman -- the daughter of a friend of his -- who has MS and is legally blind. She is a songwriter/singer around 22 or so and was singing the most beautiful song about strength and love and keeping on in the midst of great life-altering infirmities and limitations at such a young age. Tears rolled down our cheeks with the greatest admiration of her spirit. There are so many people who are walking the walk with such strength and dignity. I aspire to be more llike that during these hard days.
On the black backdrop of our suffering and limitations, the pure gold of our souls shines even more brightly. In my depths, I feel this to be true and that in difficulty we carve out even greater depth of spirit and humanity, of love and connection, of empathy and the values that are more real, more sustaining than anything else.
I'm also doing alot of art these days. It is my lifeline and helps me to stay "in the moment" when my mind whirls around in uncertainty. Here's my latest painting, a picture of a darling little piglet who Peter named Zsa Zsa. Am doing a series of paintings of animals wearing turbans, available to anyone who might want one of our animal brothers/sisters smiling or twinkling on some wall.
ZSA ZSA
I'll end with this thought-provoking quote from a contemplative Christian author, Cynthia Bourgeault:
"Life presents us with a series of seemingly irrevocable choices: to do one thing means that we have to give up something else... Our bodies age; we diminish physically; loved ones fall out of our lives. And the force of gravity is tenacious, nailing our feet to the ground and usually our souls as well..... Yes, we come into constriction, but is that the same as punishment? I believe not. I believe rather that this constriction is a sacrament, and we have been offered a divine invitation to participate in it.... A sacrament reveals a mystery in a particularly intense way while at the same time offering the means for its actualization. And in this sphere of human life, the sacrament is finitude and the mystery is "I (God) was a hidden treasure and I loved to be known."
I have been finding that suffering can be a Great Awakener of the Hidden Treasure or I can rail against it. It can create intimacy with the Divine, the Universe, or it can create estrangement. I've been all over the map on this one, but it has been a necessary journey for me and I have grown and am growing through it.
My life has been quite a ride in the last few months. In addition to the broken hip in May, now mending, but not entirely, my entire house flooded (with 3 inches of water) and all the floor had to be torn up. Rugs got ruined, my favorite art fabric had to be thrown out, as well as curtains, etc. because of the real possibility of mold, which I can't tolerate due to health issues. I've had chronic sinusitis now for going on 5 months and the new chemo is giving more opportunities to cope with nauseau. Am staying at Peter's until we can figure out the next steps, one of which is possibly moving from my beloved sanctuary on the hill -- all during a time when I was hoping to quality for a bone marrow transplant.
A friend of Peter's recently wrote him with this pertinent and funny question: "When are the locusts coming?" I laughed when he told me that because sometime it all seems so outrageously "too much." After two Hyper-CVAD treatments (intense chemotherapy requiring hospital stays of around 5-6 days), and weekly intrathecal Ara-C (cytarabine) we have not been able to control the ALL in my CSF. The flow cytometry from this week showed a small amount of leukemia cells which continue to disqualify me from having a BMT. When I found this out yesterday, I was devastated. I hadn't fully realized that I had put so many "eggs" in this basket. The transplant, as I understand it, only deals with the bone marrow and I haven't relapsed there, thankfully, in almost 3 years. However, the cancer in my CSF continues to be aggressive and very difficult to eradicate. I now face trying radiation to my brain and spinal column. This next "deeper" step (in terms of side effects) concerns me greatly. My oncologists tell me that Leukemia is very sensitive to radiation but it also can bring dementia (in about a year) when administered to the brain. It feels very risky to me as I weigh the "cost"/benefit of new invasive treatments against the probability of becoming eligible for a BMT which is also very intense to the body and there is a 5-10% mortality rate with that in itself. Most "alternative" methods either don't cross the brain/body barrier or they are simply not strong enough to eradicate cancer in the spine and brain.
So, I'm again at a crossroads facing life and death decisions. I could go back to cold energy which showed objective evidence in getting ride of a lot of the leukemia cells, but not all of them. It is infinitely kinder to the body and it could extend my life or would at least give me a better "end of life" experience, if that is to be. Meanwhile, I continue to fight on, while trying to be in a place of acceptance and Grace. Peter and I meditate and read together from deeply inspiring books of wisdom and love. In the depths of me I know we will all face, in some way, the very same journey I am facing now. I just didn't expect it to come so soon. If I had my way, I would stay here for another 10 or so years, at least, so I could learn and grow in my soul as much as possible -- in my faith, surrender, inner peace and awareness of the True Self. It is sometimes easy to look back on our lives and see primarily the deficits -- the lessons still unlearned, the unkindness and judgments, the missed opportunities. But as Kathleen Singh (the author of The Grace in Dying) told me yesterday, I (we) have already carved out so much good through our positive efforts in this life. They are already there in great abundance. I think of my attachments, which in traditional Eastern philosophy are the roots of reincarnation. Kathleen offered me a new perspective yesterday that was so helpful, saying I can change them instantly into appreciation. So I've been practicing this and it is helping not to judge myself for still loving the smell of pine needles in the sun or a cool breeze or a yummy desert.
Yogananda said: "God is all the love of all the lovers who have ever loved." As I sit here this morning and so many mornings in recent months, I can't say I feel that overwhelming love. But I can say that I have felt the warm, comforting embrace of love through my friends and family, and my dear Peter. If that's not "God," what is? We swim in the ocean of love looking for water when it is all around us, felt or not. Sometimes this is just a "belief" but then I remember times, moments, when I was touched by love without any cause or intervention. Yes, there have been those moments too. While I pray for them now (I could use the reassurance!) I remember the lives of great souls who were not given consolation in times of need, yet they lived their faith in spite of it all. These examples, and so many more of people who are suffering far greater than I, are powerful helpers on the path my life is taking me.
A friend sent Peter a video yesterday of a beautiful young woman -- the daughter of a friend of his -- who has MS and is legally blind. She is a songwriter/singer around 22 or so and was singing the most beautiful song about strength and love and keeping on in the midst of great life-altering infirmities and limitations at such a young age. Tears rolled down our cheeks with the greatest admiration of her spirit. There are so many people who are walking the walk with such strength and dignity. I aspire to be more llike that during these hard days.
On the black backdrop of our suffering and limitations, the pure gold of our souls shines even more brightly. In my depths, I feel this to be true and that in difficulty we carve out even greater depth of spirit and humanity, of love and connection, of empathy and the values that are more real, more sustaining than anything else.
I'm also doing alot of art these days. It is my lifeline and helps me to stay "in the moment" when my mind whirls around in uncertainty. Here's my latest painting, a picture of a darling little piglet who Peter named Zsa Zsa. Am doing a series of paintings of animals wearing turbans, available to anyone who might want one of our animal brothers/sisters smiling or twinkling on some wall.
ZSA ZSA
I'll end with this thought-provoking quote from a contemplative Christian author, Cynthia Bourgeault:
"Life presents us with a series of seemingly irrevocable choices: to do one thing means that we have to give up something else... Our bodies age; we diminish physically; loved ones fall out of our lives. And the force of gravity is tenacious, nailing our feet to the ground and usually our souls as well..... Yes, we come into constriction, but is that the same as punishment? I believe not. I believe rather that this constriction is a sacrament, and we have been offered a divine invitation to participate in it.... A sacrament reveals a mystery in a particularly intense way while at the same time offering the means for its actualization. And in this sphere of human life, the sacrament is finitude and the mystery is "I (God) was a hidden treasure and I loved to be known."
I have been finding that suffering can be a Great Awakener of the Hidden Treasure or I can rail against it. It can create intimacy with the Divine, the Universe, or it can create estrangement. I've been all over the map on this one, but it has been a necessary journey for me and I have grown and am growing through it.
Love is recklessness, not reason
Reason seeks a profit
Love comes on strong, consuming herself, unabashed.
Yet in the midst of suffering,
Love proceeds like a millstone,
hard-surfaced and straight forward
Having died to self-interest
she risks everything and asks for nothing....
Rumi
May we all live in Love,
Heidi
Thursday, June 6, 2013
ON MY WAY TO A BONE MARROW TRANSPLANT......
Hi Everyone,
As of 2 days ago am in the new Palomar hospital in Escondido -- opened just last August -- a beautiful place with gardens and nature-filled terraces on each floor. The staff is superb, and the food is great. On the 8th floor, I feel like I'm in a penthouse. Only single rooms -- large, spacious, with views of the surrounding mountains. I started a procedure yesterday called Hyper-CVAD treatment (high dose chemotherapy) as a pre-requisite for a bone marrow transplant. Feeling very much at peace about this decision and, of course, a little nervous too. There's a 10-15% mortality rate from the BMT procedure itself, but a well known doctor and world renowned expert in Leukemia at the City of Hope in LA -- Dr. Stephen Forman -- gives me a better than 52% chance of a cure -- so I'm going for it! Appreciate all your prayers!
Another oncologist told me today that I'm one lucky lady that this procedure is still available to me as for many my age it isn't and he added "it's a good thing you're acting quickly since ALL can change like the wind. " I've already had 3 relapses now and feel called to give myself the best chance of life. I have to get in remission again fairly soon -- am just a few points out of range.
The doctors are hopeful this will be achieved in a timely manner. Then I need to stay in a remission while a bone marrow donor is found, which could be 6-12 weeks. Doctors feel positive about a donor being found. There's more in the donor base for Eastern European decent (me) and thus the odds are in my favor. This summer will be quite a ride! I'm generally feeling very good about this decision, and at the same time am realistic about it. Have heard an equal number of stories about people not pulling through the procedure itself as I have people surviving it. However, there seems to be a flow behind the way things are lining up that is quite encouraging, so I just try to get out of the way and remain open.
The doctors are hopeful this will be achieved in a timely manner. Then I need to stay in a remission while a bone marrow donor is found, which could be 6-12 weeks. Doctors feel positive about a donor being found. There's more in the donor base for Eastern European decent (me) and thus the odds are in my favor. This summer will be quite a ride! I'm generally feeling very good about this decision, and at the same time am realistic about it. Have heard an equal number of stories about people not pulling through the procedure itself as I have people surviving it. However, there seems to be a flow behind the way things are lining up that is quite encouraging, so I just try to get out of the way and remain open.
Here's a good article about improvements in bone marrow transplants this last year: http://www.sciencedaily.com/releases/2013/05/130528180857.htm I decided against the transplant last year as the risk/benefit ratio did not seem good enough at the time.
This decision about the BMT was absolutely the most difficult of all so far. Of course, I consulted with everyone I could think of, all the professionals and experts, but at the end of the day I have to be ok with the possibility of not making it through it. It's impossible to know what the perfect way through this is, so I do my best to tune in, listen to that "still small voice within" and, when everything starts flowing seamlessly, as it has, I go with it.
Through these last few weeks my main focus has been to be cradled in Love. Sometimes I'll wake up in the wee hours of the morning and a surge of "oh my God -- what's going to happen?" will run through me. In the past, I would "go down the rabbit hole"....thought trail after thought trail, each tripping over the next, and taking me into the ditch. There is no answer to the question of "what is going to happen?" We will only know when we get there. But when I can crawl out of the ditch and get back to the present moment, a clearer landscape appears. There I can hang out as if under a shade tree, take a moment and count my many blessings, and there are MANY.
Looking at these past 2 plus years as an experience to dissolve what gets in the way of living with greater love, courage, kindness, I'm humbled by all the opportunities and stumbles -- the sheer rough and tumble of it all! They have taught me more than anything. And when you are a hard nut to crack, like me, it can take some pretty BIG whops on the head to start the process of changing those entrenched, conditioned grooves of fear, self-focus, worry, etc. Little by little, my firm grip (white knuckle grip?) on control, wanting to "know", stubbornness, fear, worry, etc. is dissolving like fog in the early morning sunlight. Rarely anymore do tears stream down my face when I wake up at 3 a.m. and start "thinking". I'm not giving up....in fact, the warrior spirit in me is even stronger...but I sense too that that precious thing we call surrender is also stronger. In the book I'm reading by Kathleen Singh she writes of surrender so beautifully:
"It is only a transpersonal aspect of each of us, flashing into consciousness however momentarily, that allows us to make the commitment to surrender. True surrender and nothing less, is a certain indication that one has recognized, finally, one's own vaster and deeper being, one's own Essential Nature."
And as she has told me several times, it is ONLY when we EXPERIENCE that Essential Nature (not merely read or talk about it) that we can embody a deeper knowing that transcends (and includes) the mind, body, heart and soul -- all the parts of us. We can truly fall into it experientially. There is no greater comfort or solace. How often I've heard "You can't think your way there". God knows I've tried that way. There are myriad experiences in life, not just cancer, which literally prod the soul to a deeper place of surrender -- we have utterly no control, not even any say, except to just "be" and to "accept" and in that field of openness the log jam may begin to break up, or not. But we are somehow finding a way not to resist it...
Through these last few weeks my main focus has been to be cradled in Love. Sometimes I'll wake up in the wee hours of the morning and a surge of "oh my God -- what's going to happen?" will run through me. In the past, I would "go down the rabbit hole"....thought trail after thought trail, each tripping over the next, and taking me into the ditch. There is no answer to the question of "what is going to happen?" We will only know when we get there. But when I can crawl out of the ditch and get back to the present moment, a clearer landscape appears. There I can hang out as if under a shade tree, take a moment and count my many blessings, and there are MANY.
Looking at these past 2 plus years as an experience to dissolve what gets in the way of living with greater love, courage, kindness, I'm humbled by all the opportunities and stumbles -- the sheer rough and tumble of it all! They have taught me more than anything. And when you are a hard nut to crack, like me, it can take some pretty BIG whops on the head to start the process of changing those entrenched, conditioned grooves of fear, self-focus, worry, etc. Little by little, my firm grip (white knuckle grip?) on control, wanting to "know", stubbornness, fear, worry, etc. is dissolving like fog in the early morning sunlight. Rarely anymore do tears stream down my face when I wake up at 3 a.m. and start "thinking". I'm not giving up....in fact, the warrior spirit in me is even stronger...but I sense too that that precious thing we call surrender is also stronger. In the book I'm reading by Kathleen Singh she writes of surrender so beautifully:
"It is only a transpersonal aspect of each of us, flashing into consciousness however momentarily, that allows us to make the commitment to surrender. True surrender and nothing less, is a certain indication that one has recognized, finally, one's own vaster and deeper being, one's own Essential Nature."
And as she has told me several times, it is ONLY when we EXPERIENCE that Essential Nature (not merely read or talk about it) that we can embody a deeper knowing that transcends (and includes) the mind, body, heart and soul -- all the parts of us. We can truly fall into it experientially. There is no greater comfort or solace. How often I've heard "You can't think your way there". God knows I've tried that way. There are myriad experiences in life, not just cancer, which literally prod the soul to a deeper place of surrender -- we have utterly no control, not even any say, except to just "be" and to "accept" and in that field of openness the log jam may begin to break up, or not. But we are somehow finding a way not to resist it...
The soul that rises with us, our life's
star,
hath had its setting,
and cometh from afar;
Not in entire forgetfulness,
And not in utter nakedness,
But trailing
clouds of glory do we come,
From God, Who is our home.
Intimations of immortality, William Wordsworth
LOVE,
HEIDI
P.S. Peter and I had to have a "get out of Dodge" trip this past weekend and before all the treatment got started, so took a short trip to Ventura, Santa Barbara and Ojai and visited some of our favorite places. He's a beer lover from way back (not my "cup of tea," so to speak, so I had other delectable treats). Here's a picture of us it afternoon one day having a jolly good time. My hip is healing very well and very quickly.
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Friday, May 24, 2013
An Eventful Few weeks
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
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
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