I haven't updated my blog recently because I haven't really known what to say except to ask and thank you for your continued prayers. I will know more this coming week, but here's what's been happening recently:
The samples from my white blood count in the spinal fluid have indicated that my WBC (which was zero 3 weeks ago) is going UP (to 10 and now 25 -- normal is 0-4), despite the treatments I've been having. This has only happened when I've been in a relapse. On the positive side, last week's cytology could find no "irregular" cells in that same CSF sample. Dr. P is quick to say that this doesn't mean there is NO cancer there; it simply means that the syringe full of fluid they check (a small amount compared to the entire amount in the spinal fluid) didn't have anything noteworthy. The higher white blood cell count could mean several things -- the worst is that I'm in the early stages of another relapse and am becoming resistant to the treatment. The best, I guess, is some mysterious auto-immune response to the anti-body treatment. I've asked Dr. P to do a flow cytometry test this coming Monday which will tell us a lot more specific info. Thanks to Dr. Gwen Stritter for suggesting this.
So...living with uncertainty is the name of the game. We all have some form of this, don't we? When it's literally life or death, it really challenges one to dig deep. If I'm becoming physically resistant to the treatment, there is little Kaiser can do anymore and there are more drastic procedures, like a bone marrow transplant or clinical trial I could try. These don't appeal to me for various reasons; Peter and I have done quite a bit of research....
My warrior and resilient body has been so valiant already and I'm so fortunate to beat the odds thus far. But I'm not drawing any conclusions yet or coming up with "strategies" until I know more. Am doing my very best to keep in the present, listening to the birds singing outside and being mindful of what is beautiful and feels GOOD and there are plenty of those things if I choose to tune into them, rather than worry-thoughts.... Have started a new painting and having a jolly good time working on it!!!
Just as I wrote this, a bird began singing in my little garden the most joyful song!
I'm reading and meditating a lot these days on the Sacred Nothingness....that place where all duality fades away and there is just "being-ness" and oneness. It all sounds so simple, but that doesn't necessarily mean it is "easy" to do. That sense of us that feels separate from the Universe, from God, from Light gets scared and doesn't want to accept untenable conditions -- conditions beyond our control. But therein lies the transformation. I read this passage yesterday by a Christian Mystic, David Frenette, who wrote "The Path of Centering Prayer" (a book Peter loaned me):
"Whatever contemplative dark night you are confronted with, the task during spiritual darkness is to avoid getting caught in yearning for the light of day. Don't bother searching for the old ways God's presence touched you and woke you up from the dream world of the separate-self sense. The task is not to search for an
artificial light. Transformation in the night (of uncertainty) is all about moving to a more subtle level of perception. Dualism dies in the darkness. The contemplative task is to remain in the darkness itself until it becomes radiant in your embracing of God and in God's embracing of you."
Ah, acceptance! Dualism (good/bad, right/wrong, lost/found) fading away to just an eternal embrace that is always there, behind all our thoughts, conditions, sense of aloneness, fears. I still feel very much a beginner on the path of surrender, despite my many years of meditation and prayer. I still can get carried down the turbulent river of this illness -- seeking the Light, or even a twig on the river bank, to hold onto!
A wonderful meditation my friend Steve reminded me of the other day is simply to sit in the silence and say, out loud at first, but more importantly to FEEL the words: "I choose to be uniquely what I am (whole, vibrant, spacious, spiritually one with all that is), and nothing less." This meditation isn't a mental process at all. It's all about feeling and sense. A profoundly deep sense of the truth of who we are as part of Spirit.
I began to feel a "heaviness" fall away, yet thoughts continued to rise up: "But my body hurts! I'm afraid of having the cancer come back! I don't feel ready to die. I've already been through so much! Not AGAIN!!! " yada yada..... As they did, I did my best not to "Merge" with them. I can always tell when that begins to happen because these thoughts are usually followed, almost instantly, by strong emotions. Now is when this practice can get sticky. We don't want to repress the emotion (bury it deep down as if it has no message or meaning), yet we don't want to identify with it either or let it carry us in a downward spiral. God knows I've done this and it really hasn't gotten me anywhere except a release. In other words, I've had some whopper "pity parties" but all that has happened is I'll have a mess to clean up afterwards. A stuffed-up nose for a good hour and a lot of used Kleenexes to toss! And what do I have to show for all my tears? I'm usually back to where I started. (I don't want to demean emotions because it can be useful and necessary to express them and get them all out!)
I began to feel a "heaviness" fall away, yet thoughts continued to rise up: "But my body hurts! I'm afraid of having the cancer come back! I don't feel ready to die. I've already been through so much! Not AGAIN!!! " yada yada..... As they did, I did my best not to "Merge" with them. I can always tell when that begins to happen because these thoughts are usually followed, almost instantly, by strong emotions. Now is when this practice can get sticky. We don't want to repress the emotion (bury it deep down as if it has no message or meaning), yet we don't want to identify with it either or let it carry us in a downward spiral. God knows I've done this and it really hasn't gotten me anywhere except a release. In other words, I've had some whopper "pity parties" but all that has happened is I'll have a mess to clean up afterwards. A stuffed-up nose for a good hour and a lot of used Kleenexes to toss! And what do I have to show for all my tears? I'm usually back to where I started. (I don't want to demean emotions because it can be useful and necessary to express them and get them all out!)
In the Mindfulness meditations I go to at a cancer support group, the wonderful leader of the meditations says to shift the awareness to something that feels pleasant whenever we start getting caught up in negative or painful thoughts. It could be a sound outside, or some part(s) of the body (toes?) that is/are comfortable. This will bring me back to the present moment very quickly. Then I can continue with the feeling of being what I am, in truth, that is larger than my pain, my conditions, my fears.... Or sitting in the Sacred Nothingness and just opening to God. Even if I can only manage this for a few seconds and then give way to tears, that is OK. No judgment.....
So my dear ones, I continue this crazy up and down journey as I lean into my sweet and loving friends, into my sweet, loving and funny Peter, my wonderful family. We celebrated my 63rd birthday party (see picture below -- I'm the one on the left with the big double chin from all the steroids I've been on!!!!!!) Friday night that Peter organized at the Tao restaurant in San Diego for 16 of us! I couldn't stop smiling the whole evening. THAT evening was truly a blessing worth counting and the warmth and goodness of it will last for many, many days, weeks and months. In the end, what is more important than love?
Wish you ALL could have been there!!!!!!
Heidi
P.S. As soon as I get any info. from the doctor this week, will post another blog.
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