How did we get here?

January 22, 2012

— A conversation with my husband, shortly after arriving home this afternoon with fresh oxygen tanks, spots on my liver, fluid pushing around my lungs (likely filled with cancer, as are the tumors inside) and at least one broken vertebra that must be healed before we resume any kind of treatment. —

How did we get here? I asked my love, across the bed strewn with children’s toys, books, and an oxygen tank.

We got here because of your amazing strength, commitment, and love for your family that you have shown since you were diagnosed – almost 5 years since diagnosis, 4.5 years since we were afraid it would end, 3 years after most IBC patients make it, all because of you. The medical details don’t matter. Our life has been a nonstop adventure.

Nonstop. I agree. And because of you, always at my side, supporting me, joking with me, taking me to yet another appointment and holding my hand. Kidding me about the speed I drink the contrast shakes, and raising eyebrows with me as the tech’s hands jiggle as he tries to place the line.

What, aren’t you going to blog anymore goodbyes?

I am not blogging goodbyes. I am not saying goodbye to you yet. I won’t.

You will have to soon. Hospice comes in an hour, and since I need Pallative radiation to fix the latest spine fracture, I can’t go to treatment anymore. We need hospice, at least for a time.

No matter what, you deserve to feel better right now, and you deserve a chance to enjoy family and friends, and if that means we use hospice, or go to the moon, or paint you green, then we will do those things. I have dibs on the paintbrush.

Green’s really not my color.

I have not yet encountered a color you could not make yours. Purple?

Purple. I’ll change clothes and listen to her when she comes, but I can’t promise that I’ll be sparkly to the hospice lady.

I’m willing to bet the hospice lady is not expecting to be greeted with confetti and song.

Good point. More tomorrow, my friends. I hope.



October 4, 2011

I’m in pain, I whispered to the organizers of last weekend’s retreat.

  • They brought me a couch to lie on for two days, and we developed ideas for coping with chronic pain from my metastatic cancer, among many other coping tools and discussions that weekend.

I’m in pain, I softly explained to a stranger who saw my tears and stopped me in the hall.

  • He said comforting words, put his hand on my shoulder, and began to pray (more about this story later).

I’m in pain, I cried to my mama, and to my husband’s mama.

  • They tucked me in bed and brought me water to flush the chemo out of my system.  My father, and my husband’s father, bustled around the house, playing with the kids and finishing projects that we had left undone since their last visit.

I’m in pain, I cried to my sweetie,

  • He cuddled me and comforted me, night after night, and arranged the pillows about me.

I’m in pain, I cried to my friend,

  • And friend after friend after friend has brought me casseroles to free up my afternoons for snuggling with the children, comforting them as well.

I’m in pain, I cried to my blog,

  • And many, so many of you have brought me sweet words of comfort and calm and words telling me that my words have helped you, or my IBC work helped a friend, or that Crickett’s Answer has given out lymphedema sleeves and gloves to 52 needy women who didn’t have what they needed before.

I’m in pain, I cried in my doctor’s office on Thursday,

  • She ordered CT scans and MRIs, passionate about finding the cause.  Why would the pain be increasing when the chemo was attacking the cancer cells inside?

I’m in pain, I told the pallative care specialist,

  • He tripled my dose of oxycontin, increased the other as-needed drug, and reassured me that I’m still on the low-middle end of need.  He has patients on ten times my dose, and they’re functioning.  If I need this to function, to sit and stand and walk, then it’s fine for me to have these drugs.  That’s what they’re for.

I’m in pain, I told the psychiatrist I found after it all went to shit in July and I was hospitalized for pain that took away my normal life.  I’m sad because I’m in pain.  Do I need more meds?

  • No, he said.  This is real sadness, because you’re in pain.  And he offered me a chocolate bar, dark with sea salt sprinkles.

I’m in pain, I whispered to my sweetie as we drove back home, nibbling the chocolate and clutching the scrips.

  • I know, he said, but I love you.  And he took me out for pizza in the warm fall day.  As the sun shined on us, I smiled again, for all of it is do-able because of those three words.  I love you.

After the clinical trial

March 23, 2011

Lego Warrior Princesses go to the oncologist

We stopped the clinical trial.  I believe I mentioned that before, but since then I’ve seen my oncologist (the army of princesses came with me, as you can see at left) and we’ve agreed to quit the trial completely, and to stay OFF the meds that made me so sick this year (I was actually bedridden, and layers of my feet kept peeling off… not fun!).  I’m still taking the Femara, which will hopefully starve the cancer cells of the estrogen they need to grow, but the other medicine is gone, and I am actually *gaining* strength and energy every day.

I’m finally feeling like myself again.  Yes, really!  This is a Big Deal for someone living with cancer, and it was absolutely, positively the right decision for us.  No, it is not the best chance we have to beat the cancer back (I think. But we don’t really know, as the medicine combo that was being tested is still being tested for effectiveness, and I *am* gaining strength without it, which has to be a good thing). YES, it was the right decision FOR US.  Stopping the trial HAS given me back my quality of life, and I both celebrate it and guard it jealously. 

Something in the morning light reminded me of that long-ago Fall in 2007, as I lay in bed trying not to die of cancer *or* the treatment that promised me new life, as the “red devil” (A/C) chemo took its toll on my body and my hair and even the use of my legs.  I lay in bed in pain and worry, terrified that I wouldn’t even live to see the Spring.  I remember those days, but for now I can just remember, and then put them behind me, as memories of a time that is not now.  Today, there are new buds on the trees, signs of new life, and daffodills at the playground. 

I did live to see the Spring.  I did.  I lived to see Spring 2008, 2009, 2010, and 2011.  Four Springs – and Summers, and Falls, and Winters that I only got to enjoy because of the wonderful and terrible miracles of modern medicine.  And while treatment is never fun and often painful, each step in the treatment has eventually brought healing, and along with that opportunity.  Opportunity to create wonderful memories of stargazing with preschoolers, opportunities to pull back the curtain and start discussions of things that never should have happened, opportunities to write my book about the people of recent space missions, and opportunities to spend time with old friends and new, even those who, if there were no treatment, I never would have even met.  That’s pretty amazing, isn’t it?

This Spring, I live with purpose.  I am grateful for the opportunity, each day, to live.  I laugh with my children and cheer them on when they explore new things – even if it’s climbing a little too high in the trees at the park, or “making soup” out of woodchips and water in the dog’s bowl that we have to clean out and clean up afterwards.  We talk and laugh and cry and dream together — because the terrible treatments have given us a new opportunity to be with and to love one another.


December 8, 2010

Elizabeth.  Oh, Elizabeth. 

Just yesterday, we heard that Elizabeth Edwards had made the decision to stop chemo.  Just yesterday, we – my family – made the same decision to stop chemo.  To stop the treatment that may be saving my life because it was taking too much of a toll on my body.  For fifteen weeks, I’ve been faithfully taking a chemo pill designed to sweep my body clean of any stray cancer cells left after this spring’s surgery and this summer’s radiation treatments.  We had hoped to finish the treatment with three more weeks, but it was not to be.  I’m too tired.  I’m in too much pain.  My body isn’t getting a break, and it isn’t getting a chance to heal. 

Like Elizabeth, I have two young children.  Mine are 3 and 6, about the same age as hers were when she was first diagnosed, but mine are veterans of the cancer treatment dance after more than three years of treatment, remission, and recurrence.  My children come to the hospital with me for checkups and blood draws.  They wait patiently during physical therapy appointments, playing with matchbox cars as the scar tissue is ripped off my chest and I work to regain function in my arms.  They help me pull my lymphedema sleeves on in the morning, settle for quiet playdates instead of park and museum adventures, and have adjusted to quiet, easy pets like fish instead of boisterous puppies as we had planned.  They cuddle with me in the afternoons when I have no energy, and happily share their legos and playdoh when I do.  They are my constant companions, my joy, my loves, and my reasons for living.

And when the little one woke me in the dark of night worried about monsters outside his window, I held him and comforted him and sobbed and sobbed, as I thought about Elizabeth’s children – and my own – and how no child should ever have his mother taken from him because of cancer. 

Not hers.  Not mine.  Not the women that we’ve lost this year or the women we’ll lose next year. Cancer is a thief that separates mothers from children and tears our world apart, one mother, one child at a time.  The grief that we feel at losing Elizabeth Edwards, mother, daughter, advocate, and friend, is real, even if we never met her, because she has showed us the depth of a mother’s love for her children, a love that keeps them close and touches us with its strength – and yet, she was taken from them anyway.  If she couldn’t triumph over cancer, how can we? 

Susan Niebur writes at Toddler Planet and Mothers With Cancer, a group of twenty women writing their truth online.  To help find the cause and the cures, please join the Army of Women participating in research studies.  If you need help, please call the American Cancer Society at 1-800-227-2345.  No one has to face cancer alone.