Friendships

Let me just say a few things about friendships, which have been confusing me lately.

I do not want pity. The fact that I have a serious illness that will probably kill me is really not so unusual. Every person on this planet is facing their own ultimate death. There is no reason to feel sorry for me unless you want to feel sorry for every person alive, including yourself.

I do not want medical advice. I have chosen my doctors carefully and I trust them. I do not want to hear about home cures or herbal remedies. Or someone else who “beat it”.

I ask you to trust that my spirituality is ok even though I may not talk about it. Please do not preach to me about your God/Jesus.

I’ve gotten to the point where I accept the “prayers” even though I’m not sure exactly what it means. (That’s my problem) I accept your prayers as token of friendship and walking with me.

I ask that you walk with me.  An occasional note of what you’re doing, thinking of you kind of thing would be very nice. Your Presence – you being you – really, is all I need.

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The Coping Dance – is it time to see a shrink

Since 2012, when I was diagnosed with metastatic breast cancer that had spread to my bones and skull (and would invade my brain in 2013), I have been doing a coping dance.

Others remarked on how well I appeared to be doing, how positive and hopeful my attitude was. I looked like I could handle this.

During much of this time my husband has been working a contract job in another state and I have either been home alone (with my dog, Jubilee), or traveling back and forth to be with him. Since my craniotomy and 2 gamma knife surgeries, I have mostly been at home this year. I’ve gotten lonely, but I’m still driving and mostly functioning, so everything looks like it’s going ok for me.

But inside, things are deteriorating. I’m getting tired of all the doctors and procedures, tired of being strong, tired of doing the coping dance. Every headache worries me. I haven’t even called for the results of the Pet Scan last week because I simply don’t think that I can handle any more medical information about myself. (If it’s that bad, they call me anyway.)

I feel lost. Like I don’t know where I am or how to get through this new territory. I feel like I am waiting to be “found” but I have no idea if or when I will be “found” — or even what it would look like to be “found”.
Perhaps I won’t be found.

Can I live in this lostness? Can I die in this lostness?

Is it time to see a shrink?

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beginning again

I notice that the last post to this blog was in August, 2012 — just a few days before my right hip started hurting. Metastatic breast cancer was the last thing I suspected.

An orthopedic doctor did an MRI and said that my hip bone was so riddled with lytic lesions that it looked like swiss cheese. My hip was fractured in 2 places. The orthopedic guys wanted to do a full hip and pubic bone replacement. Subsequent testing and biopsies showed HER2+ breast cancer throughout my hips and pelvis, vertebrae and skull.

All of a sudden I forgot all about my lost breast and the breast deconstruction. I started chemotherapy and radiation treatments. In August 2013 I had a craniotomy to remove a 3.5 cm tumor from my brain. I have since had 2 more Gamma Knife surgeries to zap more HER2+ tumors showing up in my brain.

I find that I want to restart a sort of blogging about this. I can’t make up for all the months since my metastatic diagnosis. I am just going to start here. I want to write specifically about what’s happening because I think it might be helpful to me.

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no easy answers

It is time for me to write about the deconstruction.

The surgery was 13 days ago; yesterday I got the 2nd drain out.  Already I can see a little seroma developing.

I have been tired.  Confused.  Mostly I am sure about my decision to remove the silicon implants that were placed in my chest 4 1/2 years ago during reconstruction surgery.  But I am confused about the devastation that has taken place on my chest.

Though I am relieved to be rid of the pressure (and presence) of the silicon implant that sat high on my right chest – almost to my collarbone and around under my arm – I still feel a lot of tightness around my whole chest area.  I wonder if it will ever go away.

The scars look gruesome and I avert my eyes when I take a shower.  My remaining left breast, which was de-lifted, is covered with scars and looks like it collapsed in on itself.  I call it my “cauliflower breast”.

I don’t have answers – the magic solution for how to deal with breast cancer and its treatment.  Would I have been better off with a double lumpectomied half/breast than the mastectomy that was recommended 5 years ago?  Perhaps.  But how could I have known that then?

Each woman must make her own decisions surrounding breast cancer and treatments, and it seems to me that there are no easy choices.

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following another drumbeat

My deconstruction surgery is finally scheduled for next week – Wednesday, August 8th.  Less than 10 days to go.

I’m nervous, but think that I’m emotionally prepared.  The pain of the right implant is enough to remind me that I’m doing the right thing.  I will be glad to be rid of it and hope that the removal will totally cure the aching and pinching that has been so difficult these last months.

The optimism of other women who have chosen to be “uni-boobers” is helpful but I’m still worried about what it will be like to be without a breast (or some sort of fake breast).

This morning I woke up mulling over the “split” that happens in me when I look back at myself through others’ eyes, trying to see what I think that others see.   Is part of this desire to be attractive to others a need for love?  Is losing a breast fear of losing the love of others?  Being unattractive?

Will this deeper fear heal after I have lost my breast?

Is there something about knowing myself from within, and trusting that within-ness?  If I know a loved-ness from within myself, will I be less needful of approval from others?

Will I be able to live more from that within place of loved-ness?  I hope so.

It’s all a bit like breaking a mold.  I can no longer do life the way I think everyone wants me to do it.  I have to follow another drumbeat.

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Waiting

I have been waiting for my breast deconstruction surgery for a long time.  Even before I announced to my doctor, in April, that this is what I wanted and needed, I’ve known that the implants had to come out of my body.  The acute pain and discomfort has been going on for at least a year, and getting worse every day.

It has now been almost 3 months since I have been actively waiting for surgery.  I did not realize that the surgery required pre-authorization from the insurance company, and I never could have imagined that pre-authorization could take so long.

My case is still “in review”, and they told me on Friday that it could take another 60 days!

Meanwhile, the ache in my muscle is deep and constant, and worrying.  I think about it all the time.  Sometimes I feel like throwing up.  I wake up in the night and ache and worry.  Worry that my body will never heal and the pain will grow worse and be with me forever.  Constant pain is making me nutty, anxious.  I wonder if the doctor at the University of Pittsburgh requires pre-authorization.  Perhaps she could do the surgery sooner.  I wonder if I could pay for the surgery out of our savings, and then get the insurance company to reimburse us.

This is what is called insurance company managed healthcare.

I wonder why implant pain is not treated like other pain?  If I have a tooth ache, I can go to the dentist the same day and get relief.  Why is pain from implants different?  It seems that my surgery is considered “cosmetic”, and for that reason it must be reviewed first.  But what’s cosmetic about getting an implant out and being left with an empty and concave half of a chest?  Back in April when I actually had surgery scheduled (before the provider found out that I needed authorization first) I had to get some pre-op work from my primary care physician – an EKG and a blood test.  The office called to tell me that I would need to pay for this ($270) ahead of time because it would not be covered by insurance.  I asked if it couldn’t be applied to my deductible and she said no because the surgery was “elective”.  Why is it considered elective?  Well, she said, since you elected to have the implants put in, taking them out is elective as well.

Yeah, right.  They think that this is a boob job that I got tired of.

Five years ago I had a breast removed because of cancer, then a silicon implant put in before I even realized what had happened.  I’ve been hurting ever since.

I’m getting desperate and nutty.

Last night, in my pain and worry, I began to think about a Haitian woman I had read about after the earthquake.  This woman had been a dancer and had lost her legs.  She was being fitted with prosthetic legs.  I wondered about this beautiful woman, and how she managed her pain and the loss of her legs.  I wondered if she danced with her prosthetic legs.

As I wondered about her, I began to imagine her – beautiful, silent, dancing in a new way without her legs.  I imagined her dark eyes, her breasts, her blue patterned skirt and wrap.  I imagined her so much that she became real in side of me, and I was able to fall asleep.

Today, as I was wondering how I would make it through the coming days of more waiting, this woman I imagined (or think I imagined) came to me again with the words “I can help you”.

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yoga as body-prayer

I am not a yoga expert.  I don’t regularly attend yoga classes nor do I have much technical knowledge about the discipline of yoga.  I’m also somewhat of a klutz and not athletically inclined.  But I am interested in yoga and over the last few years I have developed a morning routine that includes about 15-20 minutes of yoga stretches that I mostly learned from a DVD (Yoga for Morning Noon and Night).

This little routine has become very important to me and has been pivotal to my coming to know that the implants in my chest have to be removed.  Because they are in the way, always there, a barrier between me and my body.

With yoga, I come to know that there is a mysterious relationship between me and my body.  Am “I” my body?  Are my body and “I” separate, but inseparable?

My body holds some unutterable sacredness.  If I do my yoga stretches slowly (and with integrity, as the yoga teachers like to say) my body (rather than my mind) opens itself to healing.  Yoga becomes body-prayer.

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