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
