Sunday, June 19, 2011

Wasted Days

My oncologist says it's normal to think every twinge or ache is cancer.

Normal.

Nancy's Point recently wrote about finding a new normal after a breast cancer diagnosis. What constitutes a normal life for us?  I'm not sure my life before was normal.

Is it normal to lose both a mother and aunt to breast cancer?

Is it normal to marry at the ripe old age of 36?

Is it normal to go to Russia five times in order to start a family through adoption?

Depending on perspective and environment, none of that may seem normal. Compared to some other life somewhere, anywhere, on this planet...it's out of the ordinary, but not for me.

If what my oncologist says is true -- I don't want to be normal, not this kind.

This kind of normal caused me to lose valuable, irreplacable time.

This normal discussed occasional, possibly insignificant aches with my oncologist during a routine visit, because as he accurately says, cancer patients worry everything points toward recurrence.  Despite blood work and tumor marker exactly where they should be, the question still lingers...

What if?

The thought proceeds to burn a hole in my brain, stealing any chance of enjoyable days with my children or happily planning a future, both immediate or otherwise.

His words, "bone scan" along with "chest and abdomen CT scans" spread the flame.

Bone scan?  I've never had one.  What will that uncover?  Something.  Why else would he send me?

Normal questions asked by a normal girl.

For eight days, the tests loom large, while my world gets small.  My husband takes the day off.  We arrange childcare.  I'm told it will take most of the day. While waiting, I sit home and read of happy events for Facebook friends.  I've stopped planning our upcoming August vacation.  I need to know the answer before I can move ahead.  I can't pretend things may not change.

In the car, on the way over I see on my iPhone that Ann from Breast Cancer? But Doctor, I Hate Pink has learned of liver metastasis.  I'm devastated for her. She's just like me.  One day believing all is well, going for tests and hoping beyond hope for good results.

Why would I be different?  Why her, not me?  No good reason.  I believe it finds us all in time and I'm pissed at the pink world that believes otherwise. Those using pretty pink to blindfold us from the truth.  It could be my day.

At the appointment, I'm told there's a discrepancy regarding the amount of radioactive tracer needed for the bone scan and there wasn't enough for me. I'd have to come another day.  Those words, as no other in the last week, bring tears. I've rearranged my life to accommodate this day.  How can I leave knowing there's still no answer?  Still wondering, having to come back.

My husband, in his own convincing manner pushed for a new delivery of radioactive material and two hours later it showed up.  In the meantime, I had the CT scans and once the freshly arrived tracer was injected, I was free to leave for nearly three hours while it made its way through my body.

Over lunch, my husband told me all would be fine.  I didn't have the heart to tell him, yet another blogger found out her cancer spread.  I looked at his hopeful face and reminded him I'm not any different from anyone else who hears bad news.  We all want the same things.  The same normal things.

I waited the next day for the phone to ring, in limbo.  Short-tempered with my kids, zero desire to venture beyond my door.  Unable to commit to anything, without knowing.  I was hovering in purgatory between life as I know it or shit hitting the fan.

The longer I waited, the more freaked out I got.  Convinced my doctor was waiting for all his patients to leave so he could speak to me undisturbed for however long it would take to explain this new development.  With every minute, I was losing hope all would be fine.  Mental bargining took over, knowing all the while, cancer doesn't care if I have children to raise.
 
How can this be anyone's new normal?  Cancer was stealing days from me while I worried, went for tests, ignored my children, waited to hear.  Just waiting, not living.

When he finally called to say all scans were clear, his description of choice was "normal."  I was normal.  I don't know about that.  I know I was grateful.  Grateful and relieved to depths no words can convey, but not normal.  This sucks too much to be normal.

Relief didn't last long.  Minutes after hanging up the phone, I wondered if he misread the reports.  Probably not, but isn't it normal to wonder about such things?



13 comments:

  1. Stacey, I love the angst, the spunk, and yet the victory expressed in this post! It's thrilling to know that your tests came back clear (I use that word rather than normal; I'm not sure if it is any better). I struggled through some terrible survivor guilt when others in my support group died and I didn't. Why was I spared? And now we see blogger friends like Ann receive a diagnosis of mets.

    Your husband sounds much like mine: he would insist that the dye come in right away, and wouldn't take no for an answer. I'm glad your hubby stood up for you.

    Of all the scans I have had, I think the bone scan is the scariest. Both times I was on edge, heart palpitating until the results came in.

    Normal? No, it's just a setting on the dryer, not an adjective for our circumstances, as I commented in Nancy's post.

    Thanks so much for sharing with us your news (along with your distaste for pink and your honesty about your scanxiety, as Lori Hope put it so cleverly). We readers understand.

    Jan XX

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  2. Stacey I completely understand your scanxiety, but I love how you describe this experience in terms of wasted time. It's soooooooo true. I'm relieved also to hear that everything's okay, although I know the anxiety is always present in some form. But now, most importantly it's time to breathe, and just enjoy everything that life has have to offer. And get busy planning that vacation! Xxxxxx

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  3. Thank God, your scans were good. Notice I didn't say "normal," because I agree with you. This is not a normal way to live. The worrying, the wondering, the taking any unknown to extremes is beyond stressful. I've had the same conversations with myself about why the doctor hasn't called it, and it's sheer hell to have a scan on Friday, then be told the results won't be back until Monday. You might as well put me in a coma, then wake me when the results are in.

    Take this off your plate--I know you'll put it back at some point--love today, tomorrow and savor every moment.

    Brenda

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  4. Stacey, This is such a terrific post and it is sooo emotional for me to read because you describe so much of what I feel too. First and foremost, I am so relieved your scan came back clear. Although this is a very serious post, I had to chuckle at your last paragraph when you say you wondered if the reports were misread. I think that pretty much sums it up. Normal after cancer doesn't exist. Thanks for mentioning Nancy's Point, Stacey.

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  5. Stacey,

    I completely get it. The fear that runs through your mind when it comes to medical tests.

    I'm seeing my oncologist today and am anxious. There is no normal -- even before breast cancer now that I think of it. It's just life, and life is unfortuately very chaotic.

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  6. Thanks, ladies. I knew I wouldn't be alone in this. It's hard to remember that in the heat of the moment, though. Thank you for the lovely comments and being there, as always.

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  7. Stacey,this is a wonderful post. I'm glad to see I'm not alone in my paranoia that every new spot, itch, freckle or cough is the new red flag. Ignorance was such bliss. Once we've walked this path, our "normal" is surely redefined. Wishing you continued health and peace of mind. xoo

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  8. Stacey, thank G-d the scans were clear! I'm happy that you have this skill of being able to write; I'm sure it helps in sorting through your emotions and putting it into perspective. Take care, enjoy life, go on that vacation with your husband and sons and love every moment of it!!

    Also, kudos to Roman for standing firm. There's no excuse why they didn't have enough tracer. They need better inventory control. And, kudos to you for everything!!

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  9. Beautiful post and oh, so accurate. I'm waiting by the phone for the doc to call with my MX date. Knowing it will eventually happen, and that I have to go through this - and the sooner the better, doesn't make this day go any faster (or better). Just ring, you damn phone!

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  10. Thanks for a wonderful post, Stacy. So much of cancer is a waste.

    I think I reached a point eventually - where I'd had enough of cancer robbing me, of time, of normal thought, of LIFE. One you regain your health, and begin to trust life again, and that you know as much about your body as a scan, some of the scanxiety will fade. Now my thoughts are more interrupted waiting for results from Steve's scans (he has another set coming up at the end of June) than my own.

    Thanks so much for writing about this. It's an important aspect for the "normals" to understand.
    Jody

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  11. Congratulations on your fantastic news.

    Your post captures it all so well. Not long ago I went in for scans (bone scan, chest ct) and had just a few months prior had a brain mri and abdominal ct. All came back fine - for which I am so grateful.

    It is funny - my family and friends who do not have cancer - all seem to understand the anxiety part about waiting on scan results. But, I don't think my family and friends quite get (what you have so eloquently described) one of the other great difficulties with this cancer nonsense . . . the fact that it wastes so much time. Every time I go through the scans and the subsequent waiting I am paralyzed by it all. I can do nothing, plan nothing. It is so not me . . . and yet, it is me . . . now, after cancer.

    Congratulations again,

    Lisa

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  12. Laurie, thanks for your comment. I'm happy to know I'm not alone! That's why I love this blogging community so much. None of us have to go it alone. Someone here knows exactly what we're saying.

    Thanks, Chaya. Hey, we'll be in Florida in August.

    Fish4letters, thanks for reading and writing. I wish you all the best with your mastectomy. Please know, you'll get through it. As we all do and we're here for you.

    Thanks, Jody. I'm hoping you and Steve receive the best possible news.

    Lisa, thanks for writing. I'm so happy your scans were clear. It's amazing, isn't it? How much time is lost waiting? But, it's the nature of the beast. We just can't help it. I wish you continued good news.

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  13. Stacey, as my doc said last month, I'm a boring patient and that's a good, normal thing to be! Congrats on being normal! Try not to suffer from "survivor's guilt" about being normal. You've been through enough abnormal to deserve normal. Embrace it and continued success!
    :-) Lisa

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