I'm kinda cancer free

My Oncologist and Breast Surgeon were each vying to be the first to tell me the news.

"In your right sentinal lymph node there was no cancer and in your left sentinal lymph nodes there were cysts. That is a sign that cancer was there, but now it is gone. There was no cancer found in any of your other 24 left lymph nodes and they had a hard time finding cancer in your breasts. They found a few sporatic cancer cells here and there. It's a miracle!"

Dr. G tells me that this kind of result from the chemo happens in only 20% of the people. Usually there it is either the lymphs or the breast that are cancer free, it is rare to find both together at this level.

My first response is: "So, what your telling me is that not finding the cancer means the mastectomy and taking out my lymphs was a bad idea? or a good idea?"

(and I paraphrase) "No, having the mastectomy was definitely a good idea. And there is no other way to know that the cancer is not in your lower lymph nodes without taking them out. What this means is that your cancer is very receptive to the therapies. Statistically speaking you should continue to have good results from the rest of the therapies. We encourage you to continue the therapies and any you will live a long, long life."

The crazy part is I'm not jumping up and down with this information, because I already know that I'm not gonna die from cancer. I look at them a bit blase, because I had already known that doing all of these steps will let me live a long healthy life... otherwise I would have stopped in the middle of chemo and chosen another path.

I also know that for me, this cancer is one of the most intense initiation I have ever experienced.

The hard part is that I already knew the cancer was mostly gone, and at the same time I was very clear that I needed to have the double mastectomy and axillary dissection.

Having the double mastectomy was not a hard choice. That was easy. I have 2 risk factors for breast cancer, and now they are both gone. The hard place was lymph node removal. Whenever I check in with my intuition, I kept getting a resounding, "Yes, you need to have them removed." I don't like the idea of having the lymphs of my body, the pathways of clearing and cleaning, the body's pump eliminated. And my form of 'spiritual' does not include elephantitis of the arm!

I'm afraid of that.

But there is something here for me to learn. Yet another gate.

Do I trust my intuition?

Yes. I knew the cancer was gone. And I also knew that the next step on this journey was to have the lymphs removed.

Could I have kept the lymphs and led a happy life and die of old age?

Probably.

Why did I not fight to keep my lymphs?

Because I made a commitment to not fight this process. Keeping my lymphs would have been a bit of an uphill battle to explain to everyone that would continue to take a lot of my energy for many years. And I don't have that kind of energy.

Would I have felt sure and settled that the cancer was gone if I kept my Lymphs?

No. There is something about following the path of Common Practice of Care that is an important. It offers some kind of insurance policy for long term that makes me feel safer, and I know each step is an important part of this humbling journey.

Sometimes we are called to do things that we don't want to do, or we think how it looks on the outside is 'wrong' or 'bad' or 'not right'. And in my world, the taking out of my lymphs looked like a bad idea, yet inside it felt right.

I have been choosing what has felt right this whole time, and I am continually shown grace through my choices, so I continue to listen to my intuition. As hard as it is for my mind, I choose the path of what feels right.

And I settle deeper into my body. I begin to feel the pain, and the hurt.

I begin to feel my body.

for real this time, not just words.

I feel like recovery from the surgery is harder than chemo.

Chemo is hell. Utter hell. but it is doable, coz the hell only lasts for 2-3 days.

Surgery is harder for me because I've been so immobile for so long. And my body hurts. Being is physical pain is very new for me.

And I have very little creative or communication ability. There is a lack of motivation to write on my blog. But this is different than the 'nothingness' of chemo. It is not 'blah'. It is not 'depression'. What is it.... It is a conservation of my energy.

I can feel how much energy it is taking to get my body back to health. How much it is taking to really be - not my old self - but my new self. It is so hard to explain.

Here I am, the same Elizabeth, with the same blue eyes, and the same way of seeing the world... yet I am SO different - physically, and I am seeing things with clearer lenses.

I'm not doing my old routine of, "Pain killers are so bad for the body...." or "In the past my nose never dripped..." Who the hell wants to listen to that drama and pointless defenses anymore? I can now own the places in myself where I have been addicted to the drama, frustration and chaos in others and in life. And within that addiction, I can see how I have needed it to define who I am, for this addiction is what I grew up with, this addiction is what I know, this addiction is what I bounce off of to feel me.

I can feel a simplicity settling in.

I move my body and stretch. I try and raise my arms and stop from the tightness in my muscles, but it does not anger me. Of course my arms won't raise over my head, I just had a double masectomy and an axillary disection on my left arm! And I am okay with this.

I think this is what is called acceptance.

I can go back to work this week but I'm being kind and not pushing myself. No prenatals before 11am. People are calling me to be their midwife and I turn them down. I don't want to work so hard physically anymore.

I am being easy on myself.

I have been spending a lot of time with my parents, who have come to California for the month to support me. I can now understand why I put such high expectations on myself. Why I have been so hard on myself. Why I am so critical of myself and to my surprise: others. I had to do that in order to survive. It is what helped me feel safe within so much chaos and overwhelm. In order to get here now, that is what I needed to do.

I decide to speak to my own heart that has been addicted to pointing out that others need to be the problem. Basically I talk to the original victim, who after all this work is still here. I tell my heart that she is not bad, and that this addiction is what she is used to, the only way she knows how to define herself; but, it is not who she is. This heart is not this addiction. And back then I may have had not other choices, but now, in 2009, I do have other choices. And I make a choice to open up my eyes and know that I can be my own healthy parent and make good choices. And I do all this with love and kindness for myself and the other.

I declare that I am 40 years old and my parents are no longer taking care of me, I am taking care of me. So, I don't need to be so hard on myself, and I don't have to have such high expectations because I am choosing to no longer live in the overwhelm. I have other choices today. For instance, I can actually listen to my body and respond by saying, "No." "No thank-you." "No, I don't want to." or "No. That does not work for me".

And when I say that, I am no longer saying, "NO! Leave me the fuck alone and get out of my space." or "NO! You are wrong and I am right!" or "NO! I am not responsible for you!"

The anger and the charge is now gone. Now, I can say, "No. I am now going to express to you how much I love myself by making sure I continue to regulate my own nervous system, take care of my own energy, discern what healthy support looks like and choose the health in my system. So, no thank you. You are not wrong and don't need to change, but I need to go now." And I take myself out of a situation before I get overwhelmed, and take care of me while I still enjoy them.

And as I express this loving "No" to my parents, I release them of the responsibility to take care of me, I forgive them for all that has happened in the past and I no longer have any expectations that they need to change.

I know that I can now do all this with responsibility, spcaiousness and kindness.

And within that process I am able to soften and release more energy for healing. I am able to accept my parents as they are. To accept myself as I am. To accept others as they are.

And as I do that, I realize that not only has my inner critic has left the building, but that my inner critic had a lot more power in my life than I let myself believe! I'm shocked at how I have been running a racket and fooled even myself - in my own head for years! God, I'm good.

And then something strange begins to occur... I find myself spontaneously forgiving myself. People will be talking to me and there I am forgiving myself for the critical thoughts I have in my head: for hearing myself make them wrong, for hearing my mind beat on me, for witnessing how I compare myself to them... and then watching how all of that creates a high expectation for myself... WOW! I am pretty damn clever AND what a waste of energy!

No longer is forgiveness a bunch of words and prayers that I need to memorise. It is now a spontaneous, viseral experience.

No tears. No drama. I just stand there listening to someone speak to me and there it is: forgiveness plane and simple.

And I dance on the edge of feeling that accepting them is accepting me. That forgiving them is forgiving me.

Finally, I am stepping off the gerbil wheel in my head.

I can feel the creakings of my heart begin to open. Is this what loving others is really about?

And then the simplest of all miracles occurs. I find that my parents no longer annoy me. I can actually laugh at my parents. I find myself actually enjoying them. And I can feel the love they have for me start to trickle in - for real this time, not just words.

Post Op details

After I left Sufi, my cancer partner in crime, behind in the waiting room, I walked into the pre-operating room where I was surrounded by my team of Loving Doctors... Dr. Schneider (my OB/GYN) - who was there co-incendently for another surgery, came by to say hi and hold my hand, Dr. Kristi Funk (my breast surgeon) was ready to go in and operate first and Dr. Lisa Cassileth (my plastic surgeon) was there to mark my breasts for Kristi. While lieing there looking up I saw the smiles of three beautiful women looking down at me, and I knew how blessed I am with having not only skilled, but loving doctors, who actually care about me as a patient and woman.

I actually felt safe and happy.

I gave my request to my doctors, "Please play whatever music will make you happy and enjoy yourselves! I trust you all and want to encourage you to let your artist self out and have fun!"

And I meant it.

The last thing I remember was being told in the operating room that the oxygen mask was being switched to something else that would put me to sleep.

10 hours later I remember yelling out, "Sufi! Sufi! Where are you Sufi?"

Sufi told me that someone went outside to the waiting room looking for because I was relentless in my drugged induced obsessive request for her presence. Next thing I remember is hearing from behind the curtain, "I'm a doula. I've been to c-sections before. I won't pass out."

I was in the recovery room coming in and out of consciousness. The rumour is I still had my sense of humor about me as I spouted off random bits of information and jokes (that I can't recall), until I made it to my post partum room on the 8th floor at 7:30pm.

There I was met by Rima, my parents and my new favorite person: Alyssa from Nebraska, my nurse.

It was there that I was introduced to my new breasts - which shockingly looked just like my old ones!

I knew that Dr. Funk was known for her skin sparing masectomies, but all the pictures at the doctors offices and web sites showed breast with huge scars from skin being transplanted from somewhere else, plus scars under the breasts and down the front... that is what I was expecting. I had prepared for the worst.

But what I was greeted to was my breast minus my nipples! I knew the nipples would be gone (there is some debate, but they are currently considered an organ, and as I have ductal cancer, that is the number one place for the cancer to grow, the nipple ducts, so they would need to go). But somehow Dr. Funk removed my nipples, scooped out all the breast tissue inside and the lymph on my left side, then Dr. Cassileth AND her Surgical Partner (that is 2 plastic surgeons) worked for 7 hours each to take all the fat from my belly to surgically sew it back into my breasts with vessels and arteries from my belly area. No muscle is needed in this procedure - which is called a DIEP Flap breast reconstruction.

I am hoping that after all the swelling has gone down that my breast will be aesthetically sound enough to NOT need any kind of implants. It will all depend on what it looks like in 3 weeks. I knew that some of my belly skin would be used to make new nipples, but I was expecting some of my belly skin to be used to make new breasts too! I was not expecting that all of my breast tissue - including my very own cleavage with its moles, freckles and normal wear and tear to greet me!

When I looked down my hospital gown, there they were, my 40 year old, over-sun exposed cleavage and breasts - but a bit fuller and higher up than I remembered. Granted, when I touched them I felt nothing in the breasts, (and I was also feeling no pain anywhere in my body - I'm a big huge fan of dilaudid); but, I could still feel all the familiar lumps and bumps in my finger tips! And I could still do one of my favorite things: pet my own cleavage!

And regarding the scaring - yes I will have a big scar on my bikini line from where they had to remove the skin and fat (and a flat as a board tummy left behind :) , but that was not a worry for me, because if they could get enough fat I will not need to have any implants. And on the breasts, the ONLY scars I have are around the nipple area. There are no scars under the breasts, or down the front of the breasts or anywhere else except the nipple area! And that is a no brainer, because it will all be covered up by a tatoo artists down the road.

Yes, there is more work to do as the swelling subsides and the fat settles into place, but I am BEYOND thrilled to look down and see the familiar.

I am constantly amazed at the grace and awe that continues to unfold in front of me.

endings and beginning

"What appears to be an ending, is perhaps a beginning." - anonymous

This is what I woke up to posted on the elevator at my parent's place. And it is very apprepo.

I am strangely excited. I feel so well supported. So loved, by so many.

I don't want to rush this place, or skip over any feelings, but what an opportunity I have to offer up all those old ways of being, my old beliefs to literally receive the new ways that I so so want to have in my life!

I'm being called into the pre-op room. I am told that I have to leave my valuables behind.... along with a lot of other things that I thought were valuable, but in actually, they really aren't....

I'll see everyone on the other side

A new year, a new body.

I have slowly been giving myself space to grieve the inevitable loss of my breasts.

I have grown to like my breasts, a lot. And they have been so good to me. They are soft, and fill the hand just to overflowing. They are warm, gentle, pendulous and enjoy a really good bra. They have great cleavage and show off my womanly figure. Yeah, sometime I get frustrated with them when I can't fit into Japanese designer clothing, but they really know how to fill out a dress from the 1950's.

And I view them now as protectors of my body.

In the same way that sometimes it is the honor of a dog to protect the master by taking on a physical ailment, I feel like it is the honor of my breasts to take on all those places within myself where I have felt rage, angst, anger and disapointment. Where I have critisized, manipulated, persuaded and judged myself and others. Where I am too hard on myself and have unrealistic expectations of others. And the much too long long list of places where I have expanded too much energy and hurt myself.

I imagine the cancer as all those dark places within myself.

And I imagine that what has not been burned off by the chemo is now collecting in my breasts to be cut out of my body.

My breast have woken me up and asked me to learn how to take responsibility for my life's choices and shown me I am not a victim. My breasts have shown me that god has never, nor ever will, create abuse or forsake me. My breast have woken me up into a deeper layer of my own self where I have learned how to forgive myself and others. My breast have allowed me to have the experience of magic every where - even in the dark times - through the Red Carpet Cancer Treatment.

My breasts contain cancer and have gotta go.

And my breasts are willing to be sacrificed for the greater whole.

And I am willing to let my breasts go so that I may live.

And as much as I celebrate my breast, I mourn their passing.

I will never be able to feel the nipple firm up in disgust at the cold weather. I will never be able to experience the rush of oxytocin as a child drinks from my tit. I will never again feel them contract as a shiver runs up my spine and through my body to confirm an intuition. I will never again feel the pendulous weight of softness against my hands. I will never feel my lover's feathery touch on the fullness of my breasts.

And leaning over to make sure that the breast fills the cups of my bras at Barney's is going to be a brand new experience!

I will have scars where once the skin was smooth. I will have tattoos where once there were areolas. I will have fat where there was once a whole network for creating mother's milk.

While meditating at the Chopra Center in San Diego this past week, I am influenced by his Deepak Chopra's 4th Law of Spiritual Sucess:

4) The Law of Least Effort
This law is based on the fact that nature's intelligence functions with effortless ease and abandoned carefreeness. This is the principle of least action, of no resistance. This is, therefore, the principle of harmony and love. When we learn this lesson from nature, we easily fulfill our desires. In Vedic Science, the age-old philosophy of India, this principle is known as the principle of economy of effort, or "do less and accomplish more." Ultimately, you come to the state where you do nothing and accomplish everything. This means that there is just a faint idea, and then the manifestation of the idea comes about effortlessly. What is commonly called a "miracle" is actually an expression of the Law of Least Effort. Least effort is expended when your actions are motivated by love, because nature is held together by the energy of love. When you seek power and control over other people, you waste energy. When you seek money or power for the sake of the ego, you spend energy chasing the illusion of happiness instead of enjoying happiness in the moment. When your actions are motivated by love, your energy multiplies and accumulates--and the surplus energy you gather and enjoy can be channeled to create anything that you want, including unlimited wealth. There are three components to the Law of Least Effort--three things you can do to put this principle of "do less and accomplish more" into action. The first component is acceptance. Acceptance simply means that you make a commitment: "Today I will accept people, situations, circumstances and events as they occur." This means I will know that this moment is as it should be, because the whole universe is as it should be. The second component is responsibility. This means not blaming anyone or anything for your situation, including yourself. This allows you the ability to have a creative response to the situation as it is now. All problems contain the seeds of opportunity, and this awareness allows you to take the moment and transform it to a better situation or thing. The third component to the Law of Least Effort is defenselessness. This means that you have relinquished the need to convince or persuade others of your point of view. If you relinquish this need you will in that relinquishment gain access to enormous amounts of energy that have been previously wasted.

During my meditations I have continued visions of my body with a grey, tired - no, exhausted - shadow of myself trying to leave my body and just rest in the arms of my new guide who refuses to leave my side. But, somehow I am recoiling back into the place where I am holding on.

He begs me to die. He holds out his arms and offers me rest, comfort, safety.

He is kindness and compassion. In his arms I feel warm and can relax. I trust him.

And I want to let that grey part of myself that thinks that it's job is to keep me safe,
that works so hard to keep me safe -
the part of me that plans and controls,
as it chases the illusion of happiness -
die off.
For I am too tired to continue with even the slightest bit of the old way.

I want a life of ease and simplicity.
To do less and accomplish more.
To be able to accept people, situations, circumstances and events as they occur.
For the last bit of chatter in my brain to shut the fuck up!

And I am willing to sacrifice my breasts and allow myself to die in order to move forward from a new place of ease.

And I take responsibility for creating the story of a double masectomy. And I forgive myself for creating this situation, that is difficult and just down right awful.

And that is where my sadness is.
With all the things that I can create, this is what I choose?

God, I hope I learn to choose ease and simplicity soon...

The Big Picture "Cure"

Here is the overall plan:

I'm doing the general Breast Cancer Trifecta: Aggressive Chemo, Double Masectomy and Radiation.

Then, specific to my cancer, I am having a year of Herceptin plus some other meds for being estrogen and progesterone sensitive.

I am choosing to do all this because I want the coffin door closed and nailed shut. I really do not want to have to do any of this again....

What that means is on January 5th I go in for my double masectomy (the breast are coming off as well as a few lymph nodes in my left arm) followed immediately by the reconstructive surgery. Doing reconstructive surgery right after the masectomy has better aesthetics results AND I only have to going to the hospital once for major surgery. (oh, and for all of you people out there who have read the New York Times article, I am being gifted the new, longer DIEP surgery that most doctors do not offer because it is too time consuming. Once again, I am getting the Red Carpet Cancer Treatment! I'm getting the best and newest surgery for free!)

2 weeks after the surgery I start a years worth of another drug: Herceptin. Because I am positive for a protein called Her2, the good news is that taking a drug called Herceptine for a year, infused through my port every 3 weeks keeps the cancer from growing. The bad news is that I have to go into the infusion center every 3 weeks for Herceptin. It is painless, there are no extream side effects like the chemo, but I am still a sensative being, and it is still drugs in my body - and it means my travel time is being limited to the time in between treatments :(. No big long roadtrips for me this year...

I start radiation at the end of January and have 10 minutes of it 5 days a week for 6 weeks. The fear is that my new left breast will get all leathery and burnt up from the radiation. Because I am not having implants (thanks to the new kind of reconstructive surgery), there is a minimal risk that will happen. I've also been given a bunch of creams from other women who have gone before me, and I hope to god they work! Coz having reconstructive surgery again would suck big time!

Then I have about 5ish years - maybe more - of some other drugs because I am estrogen and progesterone sensitive. Again, these drugs help the cancer not grow. And the length of the the drugs will depend on whether I get my monthly cycles back or stay menopausal.

Basically, I spent the first 40 years of my life not needing medical care, and now it seems as though I will spend the next 40ish years going to the doctor and taking drugs.

I'm letting myself be present with the idea that my new way of being includes lots of doctor care. I am slowly integrate this new information.

I am not resistant to the process of drugs, doctors or hospitals. In fact I'm grateful they are around both personally and professionally. I'm just tired and find the whole thing a terrible inconvenience to my life! I want to go back to perceived freedom I had when my body didn't have the cancer diagnosis!

And I'm sad.

And I don't understand how this is going to work long term.

I don't like the fact that I get colds now.

And I will never go back to where I was physically before the diagnosis, in the same way that I am not the same person I was before the diagnosis.

And still, I feel the resistance to the fact that this IS my life. This IS who I am now.

Not better. Not worse. Just different.

I'm not angry, just miffed.

And then - thanks to the chemo - I forget it all.

And then I remember my favorite Rilke Poem:

Have patience with everything unresolved in your heart and try to love the questions themselves ... Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

rainer maria rilke

Sigh

I check in with my intuition, I collect my trust, I ground down into my choices, I touch my breasts, and I know I love myself even in this confusing place of not knowing.

And then I saddle up and move forward into my day as a good looking bald chick whose jonzing for a really good cup of coffee, right now.

I Guess I have changed

I took care of Pearl and Gus for a few days this week.

As I drove them home on Sunday night I was grooving to the radio and belting out Chaka Kahn's "Ain't Nobody".

"Ain't nobody loves me better
Makes me happy
Makes me feel this way
Ain't nobody loves me better than you"


A bit later, Pearl turned to me and said in a very matter of fact way, "You've changed Ezbeth."

"What do you mean, Pearl? I always sing at the top of my lungs with you guys in the car."

"No, since the cancer, you've change."

"Is that a good or bad thing?"

"Ummm. I don't know. It is just that you have changed since the cancer."

I think she nailed it. I have changed.

It isn't anything that I can pinpoint either, but I do know I can feel it on the inside, and so can she. And when a 10 year old randomly says these things out of thin air, you know it has to be true!

BTW, you can thank me later for not being able to get Ain't Nobody out of your head!