Do bumps on head mean cancer metastasis?

December 14, 2011

No. Or at least, not always. Two Sundays ago, I googled that question, in endless combinations, and found no answer. I was alone, the others having gone to church, and I needed to know — were the squishy red bumps on my head a sign of brain mets, as my Grandmother’s had been so many years ago? Or were they irritation from bone mets spreading to my skull? What were these strange bumps, and how could I find an answer on a Sunday afternoon?

I ran my hands through my short hair, exasperated at the lack of information on the net and wracking my brain to recall other forums and bulletin boards. As I rested my hands on the desk, I turned them over, questioningly – and found the palms crossed with clumps of hair. I laughed, I cried, and my mother came in to comfort me. I told her what had happened – I was losing my hair! – and she put her arms around me in reassurance.

No, no, you misunderstand, Mom! I wasn’t crying for the loss of my hair. I was crying in relief – my fears had not come true – and I was not one step closer to the end. I was just losing my hair, a sign that the chemo was working, attacking the fastest-dividing cells, as it was supposed to do.

As I explained to my sons that night, this kind of chemo attacks the cells just as each divides into two new cells. The fastest dividing cells in a person’s body are cancer cells. The second fastest are the ones that make your hair grow. So when we see Mommy’s hair falling out, we know (hope) that the medicine is killing both the cancer and the hair cells as they divide!

The kids accepted this, and asked me what cells are next – stomach, I explained, which means my stomach may hurt over the next few weeks as well. We ended with great big hugs, and my 7 year old surreptitiously tugging on my hair in the back, just to check.

In fact, the next night, just before bed, he met me at the top of the stairs and yanked on it! I yelped, not remembering the previous day’s conversation, but just as quickly I remembered, lifted him up in a giant hug, and laughed and laughed with my smart boy, checking for himself that the chemo was working – reassuring himself, and me, that we would be okay.

It’s been a couple weeks now, and my hair has significantly thinned on top, but I still have hair around the edges and faith that the chemo will work. Today I’m back at chemo, scared to take it on top of pneumonia, but scared even more to skip another week. A silly fear? perhaps, but when my day comes I know that I will have done everything I can to fight this thing and win one more day over cancer.

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No Princess Fights Alone

January 26, 2011

The next morning, I turned on the computer and could hear you all cheering me on from the comments.

As I scrolled down, I could hear you, and you weren’t sad any more. You were cheering me on, and my little Lego warrior princess, and loving my sons’ insight and innocence.

No Princess Fights AloneAnd then, I clicked through, and I saw the little warrior princess looking out at me confidently from Amie’s blog. Leticia’s. Amy’s, and Jean’s, and C.Mom’s and Abby’s. Marty’s and Laurie’s and Robin’s and Stephanie’s. Kate’s. Amy’s. Mel’s, and the LFCA community. Jenny, fellow IBC survivor in New Zealand. Sue, Margaret, Sunday. Ella, Kathryn, Anne, Jennifer, Heather, Stacey, Jennifer, Annie. Bon. Heather, Joa, Aimee. Cyndi, Rebekah, and Gayle. Michelle, Nicole, Stephanie, and Ilnap and the list is growing still —

I am blessed. beyond blessed, in every dimension of my life. I have a loving family, a strong and supportive husband, the work of my dreams, and the most amazing friends, who won’t let me wallow alone. They aren’t writing me off. and so neither will I.

As I stared, unbelieving, at the screen on Saturday, my little boys came in and climbed onto my lap for a snuggle. Widget looked up and was surprised to see his little warrior princess looking back. He asked, “Why is the Lego girl on the computer, Mommy?” and I told him what you all were doing. Both boys got happier and happier as we clicked through to post after post, blog after blog, and the warrior princess stood strong on page after page.

As they laughed in delight, I couldn’t help but join in, and we giggled and laughed and we turned off the computer to go read stories together, as it was nearly time for bed.

We all slept well that night, knowing that we do not fight alone, but with an army of princesses – Lego and real-life – and their actions go beyond the badge.

For each badge posted, Amie/MammaLoves will donate $1 to Crickett’s Answer to help women in need afford lymphedema sleeves and gloves to keep their arms and hands from swelling after a mastectomy (or two). Leticia/Techsavvymama will donate $1/comment on her post. Joanne/Pumditmom will donate $1/comment on her post. Go, comment, and spread the word – there is help available for breast cancer survivors needing lymphedema sleeves… and let me know if you’ve done something to help pass along that information (just use the words “lymphedema sleeves” and include a link to Crickett’s Answer). There are boxes of class 1 sleeves already at Crickett’s Answer that need to find their way to survivors in need. Class 2 sleeves will be bought as needed.

And if you just want to feel good about humanity? Go over to Amie’s post and see the growing army of princesses.

Together we fight, as the drugs I take each morning fight and starve and cut off the cancer cells so that they can’t grow any more.


Elizabeth

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.


Affordable Care Act

November 19, 2010

The American Cancer Society is releasing a new booklet explaining the Affordable Care Act.  I’m no expert, so if you have questions, please go to www.cancer.org or call ACS at 1-800-227-2345

I’m fighting a virus and will be back shortly.


The facebook purse game

October 7, 2010

I wrote a letter to Salon today. 

I was going to run it here, with expanded explanation and links, but I’m sick from the chemo tonight and need to lie down again before I vomit.  So here it is, along with suggested links for awareness, action, and where to donate.


Radiation Energy

July 1, 2010

Surprisingly, being zapped with 10 million volts of photon radiation each morning does not increase a person’s energy level AT ALL.

Radiation makes you tired. It makes me tired. So tired that last Friday after treatment I just sat outside the radiation center, catching my breath and gathering my energy so that I could drive home.

For nearly an hour.

It scared me. It scared people who care about me too, and now I’m not driving myself to radiation anymore, and I’ve moved the remaining treatments to the afternoon.

Luckily, there are only FOUR more treatments to go. THREE more by the time you read this, actually, as I’m typing on my iphone in the waiting room. Moving to the afternoon has given me my mornings back, a gift, although I’m more and more tired each day, as the effects of treatment are cumulative.

SO cumulative, in fact, that the nurses say that the radiation actually continues working for TWO WEEKS after the treatments end!

So I’ll be tired. I’ll be home. I’d love to see you if you find yourself nearby (and we’ve met before!). But you’ll need to call first in case I’m napping — on Monday, I slept for 14 hours straight!

Wild.


Three-Day Weekend: Be Careful Out There!

May 27, 2010

Dear Friends,

I know that with the latest news about sunscreen and the confusing study results, it’s tough to know what to do about that bottle of sunscreen on the shelf.  I know I’ve been confused — use it? Don’t use it? Panic? Don’t panic?  Well, my friend Catherine Morgan has just written a piece over at BlogHer summarizing the issue and the responses to it, including one just for us bloggers from the American Cancer Society.  She lays it all out for us, and I encourage you to read Catherine’s piece.

As you make your plans for Memorial Day, won’t you please remember to Slip, Slap, Slop (Slip on a shirt, slap on a hat, slop on the sunscreen) and protect yourself and your children from the sun’s harsh rays, particularly when they’re at their peak?

If it’s still too much trouble or too awkward to throw on a shirt or a coverup at the beach this weekend, please read this piece by Julie Pippert to understand the importance of skin checks.

Prevention is so much easier than treatment.  Be careful out there.

Susan