The Great Unknown - Facing Fears

When Eden Spodek wrote about her long ordeal in a healthy woman's battle with breast cancer she was extremely brave. And I surmise that she was brave through the whole experience.

It sounded like me in my forties; A part of me that's gone missing. For example although I knew most of Eden's story in advance, when I read it I cried. I gave her some feedback, then cried again. I sobbed when I pushed the publish button and again when I read it to my family.

I'm not generally a crier. Instead I'm more likely to just take action. Jump in. Fix something. Offer something. DO something!

But she was so brave. I'm so disappointed with myself by comparison these days.

All week I've been trying to figure out what's really at the core of this fear that's increasing daily to the point that it's overtaken me and nearly frozen me in place.

Back in December when I get that sudden diagnosis of invasive breast cancer that had already grown, I was very matter of fact. I went through the testing at that time with my pragmatic self intact.

An odd blend of self- deprecating black humor and perkyness seemed to be a good defense.

But over the past five months much of my authentic self seems to have ebbed away and my veneer worn thin.

My husband any youngest daughter have provided sounding boards and care whenever I asked something of them - and even when I didn't. She cooks, shops, runs errands, and does the nurturing part of the job. He cleans, works, makes appointments for me and goes to most, then goes back and works some more before coming home to play listening board to my concerns.

Why can't I be brave and strong with all that support?

Searching for clues, tonight at http://www.breastcancer.org I read a question from a woman who admitted to having a high level of fear about her cancer experience.  Rosalind Kleban MSW, Administrative Supervisor for psychosocial programs at Memorial Sloan-Kettering Cancer Center's Lauder Breast Center in New York City told the patient:

"you are doing brave things—taking care of yourself and doing things that need to be done. It's always amazing to me how wonderful breast cancer patients look. That just covers what they're experiencing within—the terror, uncertainty, fear—how they are really feeling."

I'm not so sure this applies to me. Oh sure, I'm doing some of the things I need to do. I've been looking for a doctor who was on my wave length and so far the progress is that:

• My mastectomy has healed and my chest wall gradually expanded.
• I now have one partially rebuilt breast and one intact breast that will be "matched" in a double surgery that has been moved up to June 11th. The end of that road is in sight.

• On the other hand a bone scan reveals that cancer may have spread and could be responsible for pain I'm feeling in a number of other areas.
• These will be screened tomorrow with CT scans and X-rays.
  

• I'm meeting with an oncologist on June 5th to go over new CT scans and X-rays test results as well as pathology reports and tests from December and January..

But most of that has been guided my husband's appointment making skills. Behind the progress I'm beginning to come apart at the seams and the uncertainty and terror is starting to show. It's not the CT scan, or the IV contrast and bariuum coctail that I fear.

Beyond the tests is the great unknown

So perhaps it's really about the long schlog just to get to this point. And the waiting. Perhaps it's about more strangers and even more doctors. Then add in putting my trust in each person on a medical staff will assure that their part of the process is done and done correctly.

It could be the myriad of possibilities that await, or even resenting putting on a positive face. And the responsibility of educating myself and the family so that we can consider options of what to do no matter how things turn out.

In the end

The wearing away of my pragmatic, chipper, upbeat
self is getting on my nerves. If I was my kid, I'd be tempted to give me/them a swift smack on the tushie and tell them to lose the tone.

Comments

[Otenth]

Anxiety can be one of the forms depression takes. Can you talk to your GP or a therapist about the possibility? Antidepressants can (not always, but can) take some fine-tuning to find the right one with acceptable side-effects, but it really can be like night and day. I speak from personal experience!

[Eden Spodek]

Susan,
I cried a lot the day the post was published and was teary-eyed the next two days. I never anticipated the outpouring of support and the emotional chords the comments would strike.

Don't be so hard on yourself. Believe me, I wasn't so brave going through my ordeal and I knew I had the opportunity to rid myself of the possibility of developing breast, ovarian and some other related cancers. You have only met the *Eden* who has come through the other side and 2.5 years later.

Many times were tough. It's only in the past several months that I've started to feel like my old-new self.

Is there anyone you can talk to and/or any support groups in your area for women dealing with breast cancer? You may find them helpful.

[Toby]

Susan - Just my heart telling you that I think, no I know, you are beyond brave.

[Eden Spodek]

Toby, you are absolutely right! Susan is beyond brave.

[Susan]

You are the very essence of fearlessness. Even your words about fear radiate this essence, which is openness, authenticity, and the willingness to look yourself right in the eye. (So to speak!)

Another indication of your bravery is your continuing sense of humor and heartfelt interest in others. You allow yourself to be touched by the difficulties others face. To me, there is nothing that could be braver. A coward lets their heart close. You have done the opposite.

As your distant Twitter and Facebook friend, you are a constant reminder to bring this kind of courage to my own life. I'm very grateful. Thank you.

[Patricia Anderson]

Reading this post makes *ME* want to cry. Brings back memories.

I don't think I've told you how I really got into this gig of helping patients (health care consumers) with information needs. That story is for another time, but this post reminds me of the patient who had the biggest impact on me, my friend Carol.

On her last birthday, we threw her a birthday party. She had had several cancers at this point, and while I still thought there was a chance things could turn around, I also knew that she might not make it to another birthday.

At one point during the party we were talking. She said something along the lines of quitting chemo and giving up. I was trying to be supportive and encouraging, and said something like, "Oh, never give up! You never know what could happen!" She just looked at me. Paused. Then, very gently and a bit misty-eyed, she said, "I can't do it. It hurts too much, I can't keep fighting. I'm not strong, like you. I'm just not strong enough." She looked like she was going to start crying, but someone else came by wanting her attention for something, and she went off a different direction.

You could have knocked me over with a feather. I was stricken. Never, ever, not in a million years, had I intended anything to make her feel inadequate or bad about herself. What on earth had I done to make her feel I was stronger than she was?

Well, I cried a bit that night, and several times over the next (and last) 2 months of her life, and bucketed tears at her funeral, making a complete idiot of myself and not caring a bit. Within another couple months, I was seriously ill myself, and reached a point where I too gave up, thinking live or die, life goes on -- someone would take care of my son even if it wasn't me, it was in God's hands. So, I know about giving up, too.

Now, whenever I hear someone saying they aren't as strong as someone else, I feel wounded, an echo of this earlier story. What I learned? Everyone's pain and limits are their own; our lives are our own. I know a lot of people who other people think are brave. None of them thought they were being brave at the time. It is all different on the inside.

There is a scene I'm thinking of from CS Lewis's book, THAT HIDEOUS STRENGTH. In it, three women (none what you would think of a potential models) were given access to a 'magic' closet with clothes that would make them look like a goddess. But no mirror. One of them, the youngest, asked for a mirror because she wanted to know what she looked like. She was told that it was mirror enough to see each other.

So it is for us. We don't feel brave, we don't feel lovely. But we look at others we love, respect, admire and argue vehemently that THEY are brave and lovely. When that happens, what we see in them, that is our mirror. That is us.

Bravo, Susan. And thank you, very much.