My birthday is coming, the first occasion I've noticed since going back to church, managing the grocery store, and returning to work. My first breastless birthday.
I continue to learn about what has been cut away, what has been left behind. About what healing is, and what it isn’t. About how much I do not know, especially when I am holding on to what I have known.
Opening my grip, even loosening it, allows for so much more flow. In, out, giving, receiving, they become one and the same. It is the opening that is important.
A word of healing power spoken by Jesus remains untranslated to this day: Eth-phatah!
What if we were to speak it? To ourselves, to our lives, to our way in the world: Be opened!
With all heaven’s power flowing through us: Eth-phatah!
Our bodies are so.so.so very wise.
I am feeling knocked down by this realization.
And I am feeling angry at the rampancy and effects and rampancy of effects -- of the separation from, and distaste,disdain,disgust for our bodies, and how that has been bred,drilled,instilled in us. (I speak as a woman because that is what I know; is this true also for men?)
This I believe: our bodies give substance to our souls, manifest our psyches, hold our God-given and demon-tainted truths.
Even believing that, and even having traversed my own valley of breast cancer, it is difficult for me to honor my body completely, come into it as a temple, attend to it as sacred.
But oh! what if we did!
The healing that has happened in the last few days (the opportunities requested,offered,accepted) is remarkable. (Last night, I forgot COMPLETELY, for at least two hours, that my breasts had been cut off!) It might have been Sunday, but at some low point of discouragement (dare I say despair?) I realized I could not bear it. I could not bear it alone. "It" being the wondering, the worry, the not-here and not-now; the what-if and what-then; the wherefore, how so, and why me?
(We are so multilayered, multidimensional, multivalent that yes, I speak to the physical, mental, emotional, and the whole that is greater than the sum of its parts.)
And in that realization, I accepted the offer of an itinerant indigenous Middle Eastern healer: Come to me, all who labor and are heavy-laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light. (Matthew 11:28-30)
It is an offer that is extended again and again, each and every moment, for each and every burden, no matter how many times we pick it back up.
Receive anew grace, healing, wholeness.
Choose Life, so that your children may Live.
Tonight, I offer thanks for gentle alignment and custom bodywork, for being held in and by community, for evidence of healing from one day to the next.
So it is.
I hit the ground running this week, as if my calendar knew that recovery was said to be a 6-8 week period. All worthwhile events: time-sensitive (CPR class for massage recertification, field-trip chaperone training, regional spelling bee) and also heart-sensitive (a Women's (Study) Group at church, a creative community project, a concert by dear friends). An hour of work, even, and a daytrip to the NRV.
1. Recovery of what? By virtue of necessity, I cannot go back to who I was. I have a taut band of reminder across my chest: different.
2. Recovery does not have an ending date.
3. Recovery varies as widely as the individuals in it.
4. Recovery is longer and more intense than I thought it might be, if I had any thoughts about it at all..
If my quota of those last two is not met, I cannot go on. That is the easy reason why I was not in church this morning: after being dressed to go out five days in a row, I could not bear to put any fabric on the invisibly raw and sensitive skin between my breastbone and the edges of my scapulae.
Yes, there are difficult reasons, too. Not having to sort them out by 9:45 this Sunday morning makes me me all the more grateful for the undeniable truth of my body, and that I have learned am learning to listen to it.
It seems this leg of the journey is over.
The tape is off, the incisions look great, and the discomfort I feel is not from the fluid, which will come and go for the next 3-6 months until my body can absorb enough of it to allow the slick membranes over both the bottom of my skin and the top of my muscles to connect in a long-lasting and meaningful way.
The good news is still so good: no cancer cells in the right breast tissue, no cancer cells in any lymph nodes. Therefore, no radiation, no IV chemotherapy. The invasive cancer, the lump, was 11mm, Stage 1. The in situ mass, though, was perhaps Stage 2? and certainly large, 40mm. Because there is a chance that a few breast cancer cells detached themselves and went traveling, it is recommended that I use endocrine therapy (tamoxifen) for five years to starve any rogue cells of the estrogen that feeds them.
On Ash Wednesday, I meet Dr. Susan Merton, a medical oncologist, to talk about all that. It seems to be a given, and I have questions.
In and every six months, I will see Ellen DeHaven, NP, drain puller extraordinaire, for her to give my chest a good inspection.
Dr. Roxanne Davenport, though, I should hope not to see again. Yesterday, I bid her a tearful farewell, being so grateful for how matter-of-fact, reassuring, and Present she was for me, how that Presence allowed no room for Fear, and how her steady eye contact was All I needed and more. She was the last person to touch my breasts, my agent of transformation.
And she has released me, cut me loose, set me free.
Glen and Tricia and I will sit in a windowless one-of-many room with fluorescent lights and a tiny mirror in the curtained dressing corner. A nurse will take fluid weight from my chest. Dr. Davenport will present my consult team's recommendations for my future course of action re: breast cancer.
And I will have the tape removed, see my body, see my scars for the first time.
Before the surgery, I had fears of this moment. In my worry, it came earlier, in the hospital, with a nurse and maybe Glen or Tricia or both, and it involved a Great Unwrapping, and a moment of seeing. Thank God that was not it in the least.
When I was regaining awareness in recovery, it was first of the noise (they had no earplugs for me and claimed to have no cotton balls either, which I found very confusing for a hospital), then of my why of being there, and a remembering to plant myself in God. When I imagined moving, I found I could, and there was no bulk. I looked down and saw no white gauze, just two curves of white mesh tape where my breasts had been. It was very sweet and calm (and still drugged) and I was so grateful that the surgery was all done.
Dr. Davenport uses "hundreds of tiny stitches" that can take six months to dissolve, sealed with surgical glue and covered with magical tape. Because I have been wearing either nothing, a darkest brown handwoven just-for-me prayer shawl, or a black silk longjohn shirt, the tape is very dark. Bits of it have peeled at the corners, and tonight I eased an edge down and smiled to see my skin! pale and alive on either side of a red line.
Then I wrapped it back up for tomorrow.
One of the possible consequences of having the drains removed early was fluid collection at the incision sites. If it developed, and it might not, the fluid could be easily and painlessly removed with a quick needle into the nerve-dead incision, the only cost being an hour's drive in and back. After a few days, certainly a week, the possibility left my mind.
Then late Thursday afternoon, I saw on my body the beginning of what the nurses had described: seroma. I quickly realized I didn't want this unknown experience, benign as it may be, that had stealthily developed in few hours. I made an appointment to go in the next day.
Friday morning, Glen and I met Samantha, Dr. Davenport's other wonderful NP. (Brandy, the RN-in-training, remembered me from the drain-pulling and assured Glen that I had done a great job. I told her I still replayed the scene in my mind, and that's not how I remembered it.)
Samantha looked at the incision sites, confirmed a fluid wave (imagine a waterbed), and said it was small enough for her to leave alone, especially given that it hadn't gotten any worse overnight and I had an appointment with Dr. Davenport coming up in a few days. It was completely up to me whether I wanted it drained. No hesitation: Yes.
My inner martyr tried to chime in: "You don't need it! You can handle it! It doesn't even really hurt, it's just uncomfortable! Bear it! Others have borne worse!"
S/he was quickly silenced, somewhat by Fear: "What if gets worse over the weekend, swells into a balloon, stretches and pulls and hurts and sloshes? What if it feels and looks icky icky ick ick, never painful but more and more uncomfortable? What if they make fun of me for it?"
The loudest voice to sound, though, was Mine. Because I had noticed, even in the short and mild experience I'd had so far, that I was disconnecting from my body ... becoming afraid of seeing it, feeling it, acknowledging it. And that aversion was so familiar and so foreign at the same time that I knew I had to cut it off at the knees.
That old way of being has no place in this new hard-fought life. I have paid my pounds of flesh, and daggone it, I will choose again and again to be me, Rebecca, here, now.
I will need to be reminded of this, I know.
I pray for gentleness, tenderness, kindness, in both the choosing and the reminding.
And so it is.
P.S. Yes, she drained 30ml of serous fluid from my right incision site. It feels amazingly different. There wasn't really enough on the left to deal with, but enough now to feel the difference (who remembers this?).
I want to give a great Thank You! and Praise Jesus! for sparing me the teachings of agony (at least for now). The discomfort I attributed to the transition and activity of arriving home became excruciating pain. It seems the R drainage tube was resting on and therefore suctioning a nerve (that aforementioned reach of forgetfulness, perhaps?). The dear nurses at the office, and dear Marilyn*, saw a slice of me no one in my conscious life has ever seen. Cursing, kicking, thrashing. It has not yet gone the way of childbirth.
But it returned me to my life, limitations and all.
I was unprepared for the nerve damage, although it makes sense now that it is here.
Sometime in the days and weeks before my "procedure," when I was reluctantly but religiously photographing my breasts, I noticed a distinct lack of sensation, as if they were already gone. My spirit breasts are taking it on double now. I did not expect this extreme sensitivity and tender numbness. Strangely, or not I suppose, one returning sensation is that of being full of milk, ready to press a baby's mouth to my breast. (There is also a purr on my right side, just above the scar, with my heartbeat when I am quiet and still and relaxed. It cracks me up.)
And that is me.
There's a couple new pictures in the Gallery, but don't look if you don't want to see the scars.
And a tiny post at peek, trying to get myself lined up together.
*Thank you, Marilyn! You were perfect. (She agreed at 7:30 am to drive me an hour to my 10am appointment, after Glen was hit by the girls' stomach bug that morning). And Thank You! to all the providers of food, love, prayer. It is nice to be cared for.
I am sorry. Please forgive me. I love you.
I am sorry that it has taken me until today to see you as the heart pillows you are, to consider that the soft acceptance and strength I feel when I hug other women is what people might feel when they hug me. I am sorry that you will not be there to meet all those other pillows, to be a pillow, especially to our youngest nursling, who knows and loves you in a way I am blessed to receive. To her, you are sustenance, nourishment, comfort, sweet milk, warmth, knowing, oneness, love.
I am sorry that our journey together has not been one of love. Or even, until lately, acknowledgement.
The truth is, I never wanted you.
I was afraid of you. Of the burden of you. The weight of you. The undue attention you brought to me simply by being there on the outside of my body, impossible to hide.
I remember the day of the movies in 5th grade, boys in one classroom, girls in the other. I was horrified to learn that so much was going to happen to my body, none of it in my control. That one day I would have a chest like Sissy Peters already did, and boys would tease me and girls would narrow their eyes.
And, dear breasts, you were part of a much bigger picture. Blood every month for what seemed like the rest of my life? Shameful blood that no one could know about? That had to be kept secret? What if it came upon us unawares, and we bled through our panties, spots of red on white pants, shorts, skirts, left behind on wooden desk seats? What if someone knew we were bleeding?
And, dear breasts, with you came that (hair) that isn’t soft, that is so very very very wrong.
My mother still gave me a bath then, and that night (I can remember holding my toes, sitting in water, my still-child's chest against my thighs, my chin on my knees, the legs of her on the closed toilet beside me) I told her we watched a movie about what was going to happen to our bodies and I was scared and didn’t want it to happen. Her answer: There was no way around it and best get used to it.
Perhaps, probably, as a girl, maiden, woman of her time, living her story, she had no other reply to give me. Perhaps, probably, nothing in her own experience prepared her to tell me that my body could be a source of wisdom and pleasure, that it could bring forth blessing and life, that we are all vessels of Spirit.
Because what happens when a temple is defiled?
Until someone comes back and clears the rubble, sweeps clean the floors, and lights again the candles, it remains vacant, waiting, the Presence unfelt. Left long enough, others plunder, roughly, casually, unknowingly.
And so, dear breasts, I wanted you not.
And still you came, as does tomorrow.
I am sorry. Please forgive me. I love you.
How many of us get to anticipate, witness, participate in our own metamorphoses?
I feel shy to say this, but I feel honored to be offered the opportunity.
And perhaps a little embarrassed to admit that it takes a lot to get my attention.
Because I daresay that we are all offered opportunities to transform ourselves, perhaps each and every moment. There is always a new breath in, another breath out. This breath is new, and this one, and this one ... and breath is spirit is God is Spirit is Breath.
So maybe I can multiply that by loaves and fishes and imagine my life avec mes mamelles as one Breath, and my life upon awakening sans-eux as another Breath.
With so many smaller Breaths between ...
These next days of home and work and therapy ...
Sunday's healing gathering (so much of it still TBD with faith in the process) ...
The day before ...
The morning of (I am leaving early to spend some time on the way with my childhood friend, Rebecca, a German Baptist mother of ten, who has remained an inspiration and a light in my life, who is an embodiment of the power of forgiveness and faith and the love of Jesus Christ) ...
The arrival at the hospital ...
And then it gets dim and hazy and is out of my hands for a while ... Thank God.
I have such a parade lined up that it is hard for me to stay in the here and the now.
In this Breath.
and then time comes rolling, pressing, crushing.
there is much to report.
for a quickie:
for more, stay tuned.
and this: so. much. love.
to you, and you, and you and you and you.
They multiply in ways beyond our knowing.
My family, my children, have a benefactor this year, an angel of abundant blessings.
She is a new friend, a pilgrim on another path, one that includes giving out of gratitude.
For me, it has been a lesson in receivership.
As in, "Let earth receive her king!"
As in, "Ask and it shall be given unto you."
As in, acceptance.
My children might disagree on Christmas morning, but the biggest gift of today is the embodied practice of literal acceptance as my car fills with boxes and bags and stockings. It is a moment I can call up, hearken back to, bring forth: the sunshine, the smiles, the glee, the joy, the freedom from obligation, the peace of acceptance, the companionship of love, and the anticipation of sharing it, spreading it, seeing it grow.
That the diagnosis brought this about is not lost on me.
God works in our brokenness to make us whole.
Last night, after supper, around Ursula's birthday candle, I told the girls that my nursers have cancer in them and I need to have a surgery that will remove them and the cancer. Ursula was very interested in the logistics of it. Flora cried because she does not want my nursers to go away. (Asa later told me I did really well in telling them.)
This morning, Ursula woke up crying with a bellyache and is now back asleep. Flora is bright and cheerful and loving on Mary Christmas, our new calico kitten from choir practice on Wednesday night.
Today is Mark's birthday, the Christmas pageant at church, and one calendar month until I wake up in a different body.
The next scheduled appointment feels much more personal than the Big C word itself did. I remember busting out with the news of the diagnosis at choir practice the day after, no hesitation. Now what? "All is well, just getting everything cut off!"
Part of it is because the good news is just so good. How could I possibly "complain" if all I need is surgery? It is such a blessing, and every time I remember, I thank God.
Which leads to ...
Getting it off my chest.
I sent three of the same letter today, something I once thought I should not, could not, would not do. And now it is done. I have done it. In this liminal space between sending and receiving, I am giving to God my worry and asking that it be transformed into power to meet what is to come. I am also intrigued by the impulse to share it with others: my father and his therapist, the church--both priest and vestry, other important people who deserve to know what has happened.
Those are the two funny accidental sayings from today. They came with lots of laughter, tears, and wild rides in between. I give thanks for friends who meet me where I am, walk with me, love me. I am blessed indeed.
Asa (13) has known all since the day of the biopsy, when he heard Glen mention that I'd had minor surgery that day. His ears perked up, so I filled him in. Three days later, he punched a troublesome kid on the bus, and with a trembling lip, he said, "With everything going on this week, I just didn't have it in me to ignore him anymore. So I punched him." I said, "Good for you." I've since let him know everything I know when I know it. He has a friend from church whose mother (my Altar Guild mentor) also has breast cancer. My relief at all my good news multiplies exponentially when I see it in him.
Glen (my husband) knows all. It hasn't worked out yet for him to come with me to a procedure or appointment, so I tell him as much as I remember and he trusts me to do what is right for me.
Tricia (my friend) knows the most. She is a God-given gift whose depth of love and giving knows no bounds.
I have had lots of people praying for me, many of them knowing that 12/8 was the day I would know Something. I have spoken to only a handful of people since then, meeting first my own feelings about it all so that I know what even to say.
That is the who.
And now you, and everyone but the girls until further notice, can know the barebones what:
~ no intravenous chemotherapy expected
~ no radiation expected
~ bilateral mastectomy
~ no "reconstruction" (as if that's anyone's business? more on this later to be sure)
~ Wed 1/18/17 1:00 pm
~ 8 weeks until I am back to baseline
The best I could have hoped for.
CURRENT MEDICAL STATUS: Cancer-free (to the best of anyone's knowledge). And breast-free too. Taped incisions, drain tubes REMOVED!!!, adjustment to nerve damage, faithful to exercises, slow going.
*On October 6, I had stabbing pain in my right breast that worsened through the day and overnight. It became an infection, which cleared with goldenseal, castor oil, fluids, heat, and rest. There was still residual pain two weeks later.
On October 19, I had a mammogram of both breasts and an ultrasound of a lump in my left breast. My breasts are very dense (reported to me by law), my right breast showed numerous calcifications, and the lump was deemed suspicious. A biopsy appointment was scheduled for the next week.
On October 27, Delia drove me to my Needle Core Biopsy appointment so that I could have the Valium. Thank God. They added on a StereoTactic Biopsy, which was actually THREE STBs by the time they were able to penetrate my dense breast tissue and grab a well-calcified bit. Even the well-seasoned nurse said it was a "very difficult procedure," and that I "did very well." Maybe the Valium, maybe the alien abduction UFO-testing aspect of the experience, maybe Raphael (https://tomkenyon.app.box.com/shared/dobrb8d5u9) singing (https://tomkenyon.com) through my brain.
On November 1, I learned that I have cancer cells in both biopsied areas. The calcified bit is ductal carcinoma in situ, and the lump is invasive ductal carcinoma.
On November 11, I had severe pain in my left breast near the STB area. I took Keflex in case it was an infection, and the pain subsided.
On November 15, I had an MRI on both breasts. On November 22, I learned that my lymph nodes are not affected, my right breast is not affected, that there was a hematoma in my left breast, and that my left breast has a "45 mm malignant extent." The lump is the size of one of the walnut plugs Glen bought for me to one day bang into the oak flooring he's been milling and stacking to install! The report also states, "Exam specificity limited by marked background enhancement." That dense breast tissue again. Means that if something shows up, it is definitely something, but just because it doesn't show up doesn't mean it's not there. The other encouraging words are "Definitive surgery recommended," which I did look up on the internet, to learn that it means "cured by surgery alone," which I interpret as meaning nothing other than surgery might be needed. Cross my fingers.
On December 8, Tricia and I met with Dr. Davenport. I LOVE HER. And yes: "bilateral mastectomy, removal of sentinel nodes on L, no reconstruction," something of a euphemism for "amputation of both breasts." Currently scheduled for Wednesday, January 18, 2017.
*Another beginning can be found on October 1 (and the slow-growing cancer was massing long before that). At an Embodied Feminine retreat that day, I found myself frozen and unable to follow the suggested instructions of touching/massaging my own breasts to follow up on the lymphatic qigong we had already practiced. Later that day, describing to Glen (for the first time) the flashback / panic attack that followed, I had to work hard to form and vocalize the words "my breasts." Four days later all I could say or think was "breast, breast, breast, breast, breast." And now they are going away. Healing comes in unexpected ways.
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