A daunting encounter with my oncologist brings me to my edge.

Trauma in the Cancer Circuit

August 16, 2011

To: theater group

This is a long e-mail—six printed pages!! I hope you will read it, but you may want to read it in pieces if it is too much to digest in one sitting. Obviously you will not be able to respond to all of this material, but if you could send me a reply letting me know it was read, that would be much appreciated.

blessings and thanks,


9:02 am

Good morning ladies,

I am sure you are all mentally preparing for the performance tomorrow, whether consciously or subconsciously. I am looking forward to being a witness.

I have some things to share, but it is a little upsetting to write about. As I think about composing my thoughts, I start to cry and get a little bit of a headache, but also feel it might be helpful to organize my thoughts and to make a record of yesterday’s events. I think I will write this e-mail in pieces, so it doesn’t overwhelm me and bring me down.

Ah, where to start . . .

Yesterday I went to see the oncologist, Dr. Nakabe. I wasn’t particularly nervous. After dealing with the surgeon [Dr. Dinare], I thought this would be anticlimactic, but I was wrong. As soon as I entered the waiting room, a darkness descended upon my spirit and I wanted to run. Actually, before I even entered the room, on the drive there and in the parking lot, I was feeling high anxiety. The office always calls people the night before to confirm appointments, and I didn’t get a call so I was starting to panic, thinking that perhaps they had messed up the scheduling and didn’t have me down for the right day. I didn’t have a panic attack, but my heart was beating fast; I didn’t want to have to reschedule and do this again. I thought about calling the office, but decided at that point it would be easier to just park and walk to the office and check.

The front desk confirmed that my appointment was today at 1:30. I felt a little bit of relief, but as I sat down in my chair, I began to squirm. There was a very sick elderly woman making heaving sounds who was being taken care of by a man who looked to be her elderly husband. A few times she coughed, and I found myself fearful of the germs in the room. I tried to imagine myself with a force field around my body protecting me from the energy in the room. And it wasn’t just this elderly couple; I could barely tolerate sitting in this room. I contemplated leaving. I checked with the receptionist to see if the doctor was running on time, and she said “yes.” I nervously checked my cell phone for the time. 1:32. At 1:35, I am called in to see the doctor, thank God!!

There is less darkness in the doctor’s office. It is a small room, but the space is empty and I can find some peace in the emptiness. The nurse comes in and wants to weigh me . . . I refuse. She takes my vital signs and draws blood. They will be testing to see if I have signs of a metastasized cancer. That’s what they do here, they search for cancer. That’s their job. Normally I never even worry about these tests, I don’t even give them a second thought. Sometimes I even forget that I am waiting for the results because I always believed that the chance for a metastasized cancer was so remote that I just went through the motions of the testing but didn’t really take it seriously. Now with all the talk about metastasized cancer since the second breast cancer, I realize that I have a new anxiety. I begin to see the power of the doctor’s words and how it affects what I call my “trauma brain.” This part is very important so I will talk more about it later. But first I will take a break and take my morning walk and do my morning exercises and stretches. As I already stated, what I have to say this morning is very important to me, but I will have to do it in pieces, both because of the length and because of how disturbing and triggering this material is for me. Thank you for reading thus far.

Just one more thing before I take my walk . . . the headache has subsided, so I suspect the headache was related to resistance and fear of talking about this—part me of saying, “Just keep it all in, don’t tell anybody, you’ll feel worse if you talk about it, it’s not safe to talk about it, nobody cares, you’ll overwhelm people, you’ll be rejected if you talk about it, people aren’t safe, they will make things worse,” and hating myself for needing people. Then there was this internal energy that was rising from my chest and drawing me to my computer, this organic urge. Now the headache has returned slightly, so I will just say there is an internal battle going on right now—ambivalence, old patterns triggered and new ones trying to emerge—and for now I will just observe the dance of the parts. Also I have started sweating profusely, which is usually a sign of great fear or terror.

Okay, I am in my bathrobe, so I am going to put on my walking clothes and take my walk now . . . after I brush my teeth :)

to be continued :)

9:58 am

I finished my walk. I realized while walking that this subject matter was too heavy for me right now. I needed to reconnect with the joys of life and my passions and my spiritual self before going further with it. My walk accomplished this goal.

While on my walk I saw this small dog being walked by a female owner. I have a good relationship with animals and preverbal children, but also children in general. So I saw this dog who was looking eagerly at me and I stopped to pet it. It was a small dog with ragged fur, and the ragged fur made me think the dog was old, but the owner said only a year old. I talk to animals and preverbal children, giving language to what they cannot say. It is a spontaneous, organic process for me. I do not think about it. I just find myself doing it. So I was petting this dog, and the dog was very responsive. I begin, “You’re a friendly dog.” The owner smiles and says, “Yes, he is.” The dog is responding to my petting by curving his body and moving his feet to arrange different angles of petting. But he is also putting my hand in his mouth and gently biting. I am fascinated because I can feel his need to teethe but I can also feel his awareness that if he presses too hard it will hurt me. Normally I would remove my hand from a dog that is biting—Duh!!!—but I am so fascinated by this dog’s ability to know just how much pressure he can apply without hurting me and balancing that with his own need for relief. I say, “You know just how hard to bite without hurting me.” The owner says with some concern, “I hope so. Something is going on with his teething. I’d better check it out.” Really it was so remarkably impressive that this puppy—one year old—was so highly aware not only of his own needs but of the presence of others and his impact on others and his desire not to inflict pain.

I have little encounters like this with animals and children that I meet on my daily walks. The preverbal children encounters are so satisfying. It’s like an immediate soul connection. Often when I leave these brief encounters, the children are reaching for me with outstretched arms and the parents can barely hold them back from following me. Sometimes I think I should leave the mental health field and just get some kind of job working with “healthy” children. My most recent encounter was a few days ago. I was walking, and this little girl who was being held by her mom caught my eye. The girl and I spoke with our eyes, our energy exchanged, and she began smiling and getting excited as I walked closer. Mom put her on the ground and was holding her with one hand, while the little girl stood on her feet. I asked Mom how old she was, and she said fifteen months. I turned to the girl and said, “You’re a big girl. You’re standing on your own feet.” Her grin widened. Then she turned away from me and was pointing at the ground. I said, “Yes, so many interesting things to look at. The grass, the ground . . .” Most parents really like when I interact with their children in this manner, but I could sense this mom was a little anxious and not sure what to make of me. The girl then turned back toward me, and I put my hand on her stomach. I don’t know why. I still don’t know why, but energetically I was drawn there, and I just followed my impulse.

So this child is grinning, eyes wide, beaming, excited . . . and I feel this profound connection and sense of pleasure, which is clearly mutual. I can see that Mom is still nervous, so I say to the girl, “I was drawn to you and wanted to say ‘hi,’ but now I am going to finish my walk.” As I walk away (backward) I maintain eye contact and am saying, “bye-bye,” as I wave with a big smile. The child is lunging toward me. Mom cannot keep her balanced on her feet and has to pick her up. I eventually turn away and continue on my path. These are priceless moments that pop out of nowhere. Perhaps there is reason to live :)

1:09 pm

Okay, thoughts are chattering in my brain. I guess that means I am ready to continue the story about yesterday . . . So, I am in the office waiting for the doctor. The nurse has already drawn blood. I have refused being weighed and I have refused to put on a gown because I am not going to be examined. I just want to get the blood tests done and to talk with the doctor. I ask the nurse how long till they get the blood results, and she says, “five days,” at which I become irate. I say, “It usually takes a day or two. Has something changed since last time I was here?” The nurse starts to reply, but my head begins to pound with enormous force and I can feel my face turning red. I tell the nurse in a very curse voice, “Never mind, never mind, I will just ask the doctor.” Dr. Nakabe walks in and says, “So how are you after the surgery?” I look at her and say, “As well as can be expected.” She then starts rattling off a bunch of questions: “Dizzy? Nauseous?” etc. I interrupt her and blurt, “How long till you get the results of the blood test?” The doctor replies, “Tomorrow or the day after.” Then she says, “Dr. Dinare [the surgeon] wanted me to talk to you about hormone therapy.” I say, “Yes, I know, perhaps you can explain why you think it’s necessary. It doesn’t make sense to me.” [Dr. Dinare had recommended I go back on tamoxifen. Tamoxifen is a drug that helps block estrogen-sensitive cancers from receiving estrogen, which is like food to those types of cancer. The doctors were recommending it to help protect my left breast.] I continue, “I already went on tamoxifen for two years. I don’t have my right breast anymore, so I don’t have to worry about cancer there. Dr. Dinare said my risk in the left breast is only slightly higher than a woman who hasn’t had cancer. I don’t see why I should go on it again for my left breast.”

Dr. Nakabe’s response shocked me. She insinuated that it was my fault that the cancer returned because I stayed on the tamoxifen for two years instead of the recommended five. Two years is the bare minimum recommendation, and five years gives you an extra percentage or two of protection, if you believe the stats.

I was infuriated, but asked Dr. Nakabe to elaborate, to help make medical/logical sense of her recommendation. As she responded, there was a coldness to her demeanor. She said, “Well, if someone had pneumonia and didn’t finish the course of antibiotics and the pneumonia returned, I would recommend another full course of antibiotics.” I didn’t think of it at the time, but I wish I would have said, “NOT IF YOU REMOVED THE LUNGS.” I felt like it was two lawyers talking. I repeated, “The right breast has been removed and my risk of cancer in the left breast is small—” Before I can finish my thoughts, Dr. Nakabe interrupts to say, “YOU COULD HAVE CANCER IN THE LEFT BREAST. MAMMOGRAMS ARE NOT 100%.” I could not believe she had the gall to speak to me like that. It felt cruel and malicious. I went to see Dr. Nakabe for support and help in understanding my options, but all I got was some stupid analogy about pneumonia, blame for the most recent cancer, a bunch of stats, and an attempt to fill me with fear in order to get me to comply. I left the office feeling overwhelmed, scared, lost, and utterly alone.

When I got home, I called Renee [a friend from theater class]. It was about 3:00. Renee said some helpful things. She reminded me that the emotion was intense at this moment and that the decision about tamoxifen did not need to be made today, so I could put that out of my mind for now. She also helped me come up with a self-care plan. Renee suggested I go for a walk as soon as we hung up and do a crystal healing session on myself after that. I agreed. Renee helped me remember that I needed to get perspective in order to deal with these intense emotions productively. Reconnecting with body, earth, and the present moment were critical. I needed to distract myself and then come back to the tornado of emotion. Just sitting consumed in it was not going to be helpful, and I was able to see that and take it in.

This encounter with Dr. Nakabe set off an avalanche. Everything I had been dealing with came down on me simultaneously, and I began to feel suicidal, unsure if I was equipped for this world and wishing to leave it. I found myself saying, “I want out of this world.” At that moment I became aware of how the past and present were superimposed, each so powerful and charged in its own right, but now combined in a massive fusing that had brought me to my edge. To conserve energy, I will just make a brief list of all the issues I was addressing.

1. The loss of right breast.
2. The fear of the impact of the mastectomy on future sexual relationships.
3. The fear of future cancer in left breast or a metastasized cancer.
4. The rage of having to be in “the cancer circuit” with all these doctors.
5. Profound feelings of aloneness from the past overlapping with feelings of aloneness in the present.
6. Frustration over the interruption to my social life, and life in general, by the second cancer.
7. Knowing I have another surgery in two months to complete the reconstruction.
8. Waiting for the results from Dr. Nakabe’s blood test.
9. Feeling, as I did in the past, that there was too much for me to have to contain and deal with alone.

So, in conclusion, this encounter with Dr. Nakabe created an avalanche that toppled me. I do feel I am starting to return.

love and big hugs to all of you, and see you tomorrow on stage,


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