After reading Stella’s post it reminded me of something I wrote at the very beginning of my journey, now almost 2 years ago.  Re-reading, I could feel again the terror that swept though me in the time between diagnosis and active treatment — one of many junctures that seemed impossible to get through at the time. I posted it here in hopes that some of the newer members will not feel so alone and will know that there is life after all the struggle.

What Keeps Me Up at Night

I have been told, by the Warriors I know, the woman who have beaten Breast Cancer or are still in the throes of it, that this period I am in–the one between diagnosis and surgery—is the most brutal. Every night I go through the motions of a normal nighttime routine.  I wash my face, brush my teeth, set my alarm clock and crawl, exhausted, under the covers; only to lie there and listen to the endless parade of horrible thoughts that march through my brain. Sleep is not even a factor anymore.  Each night my stomach churns as if it were the evening before the start of a brand new job. Unfortunately, though, I don’t get to wake up, don a crisp suit and meet my new co-workers.

A friend sent me a quote recently; “Fear is just a lack of imagination”.  This I truly believe – in the daytime.  But when the dark surrounds you and your family is sound asleep and the dog is happily snoring next to you, it is imagination that takes over and elicits such intense fear that sleep becomes comical. My imagination tells me that the cancer is growing. That somehow it has jumped onto the nearest lymph node like the big Kahuna catching a ride on a radical wave and is surfing through my bloodstream. I watch it in my mind; I actually feel it happening in the quiet hours of the night.

When my imagination is not messing with me, it is the facts.  The information I read in books and on- line, things like: 40, 000 women will die this year from breast cancer. If the cancer has spread or returns, my chances of survival are sliced in half. I read that throughout chemotherapy I will be sick and tired and could get tingling of the hands feet, muscle and joint aches and a swollen heart.

Then my vanity kicks in. I know that I will lose my hair, this I have accepted. It is when I read that I will gain weight from the chemo – possibly 20 pounds – that I start to panic. Wait a minute.  I have always pictured chemo patients as emaciated and thin; tired and frail.  Not that I want to be emaciated, but, well it’s better than puffed up and bald, right?  I didn’t think I was going to look like Kojack!

It is at this point in the night I try to talk myself back down.  This vanity has to go.  Maybe the cancer is God’s way of reminding me that there is more to life than hair and a good figure. I am hoping that I learn that lesson.  I am hoping as I have been told that I will come out of this with a new lease on life, an appreciation for the little things and a new respect for the life I have been given. Tonight, while I lie awake, I will think about that and I will make deals with God –you know, the ones we used to make as kids all the time, like please make sure my mother doesn’t find out that I crashed the car and I promise I won’t drink– ever again. I will tell Him that I really, honestly will appreciate every leaf and piece of grass, every bird and every snowstorm, if he promises to let me keep my life and live to see my kids grow up. I will promise to stop yelling at my 14 year old and I will clean my house and slow down and smile more and go to Church. I will do all this if He will just make this go away……

Oh, and one more thing, I will ask Him if I could please, please get through this ordeal WITHOUT the extra twenty pounds? You know it can never hurt to ask.

Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week.  She wants to know which stage of cancer was the most challenging?  Diagnosis?  Beginning treatment?  Ending treatment?  Some time in the middle? 

For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning.  I know what she means.  For me, it seemed an exceptionally long time.  I was diagnosed on December 22, 2005 – the Thursday just before Christmas.  Most every healthcare professional was heading out of town.  Certainly no one wanted to take on a new patient over the holidays.  Consequently, I didn’t meet with my new Oncologist until January 3, 2006 and began chemo the next day. 

Those 13 days were beyond horrible.  There was a cancer inside me thriving at my expense.  It seemed to grow bigger every day!  I could feel it.  I swear, I could hear it whisper dark promises of an early death and motherless children.

What bittersweet Holidays that year.  Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year’s.  Why ruin everyone’s Christmas?  The end result, however, was a great burden on our hearts that we couldn’t share with our friends and family.  Each seasonal tradition was painful beyond belief.  Who would search with loving dedication for just the right gift from Santa?  Who would listen to their babbling, aimless words and sift from them their heart’s desire?  Would I ever read The Night Before Christmas to my little boys again?  Would I ever see their eyes alight with the wonder that is Christmas morning ever again? 

The day I began chemotherapy was the. best. day. of the next 10 months.  No more being hostage to fate!  No more victim!  At last I was fighting back! 

Still, I don’t think that was the most trying time for me…  My toughest day was the day I truly started losing my hair and made the decision to shave the rest off.  Until that day I had not really felt ill despite my first round of chemo.  Until that day cancer had seemed vague and ephemeral; death had been theoretical. 

Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp.  Initially, it was funny.  It’s really the strangest thing.  It doesn’t fall out all over the place.  I didn’t wake up with a scalp on my pillow.  All the hairs still look firmly attached but they’re not.  It’s like they’re all held on with Post-It glue.  One little tug and it comes away in your fingers without so much as a “pip” to indicate the separation.  It’s kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way.  A couple of mornings later and it’s not so funny anymore.  I won’t bore you with the details again. 

Losing my hair took me out of the closet.  I became a walking Poster Girl for chemotherapy.  Every time I looked in the mirror I was confronted with my mortality.  The baldness literally stripped me bare.  I couldn’t walk through the store without drawing stares.  My son would beg me to take off my hat to show his friends my bald head. 

With my hair went my vanity, my anonimity and my delusion that I would live forever.  Looking back I feel very, very blessed.

 Cross-posted to I Can’t Complain Any More Than Usual.

Happy November, everyone! Although we’re still a day or two away, I couldn’t WAIT to set up this month’s check-in! How are you? How’s treatment? Recovery? Mothering? If you haven’t posted in the last couple weeks, or if you just want to leave an update, this is a great place to do it!

Also check out the latest from our group blog:

Everyone is welcome to leave a comment on this monthly check-in post, to ask questions, to share concerns, and to leave notes of support, whether you currently are a writer for this blog or not. We’re a community ’round these parts, and this is one of the big places we act like one.

Now go hug those little goblins, and have a Happy Halloween!

crossposted from ThrowsLikeAGirl

(cross posted on Coffee and Chemo)
———————————————————————-

You know, I am good. I mean, I have cancer and everything, but I am good.

Mostly, I feel good, and I do things, and I even work a bit.

Most of the time, I do not feel that cancer defines me.

But it does.

I am unquestionably in the cancer world.

Even taking chemo in pills (at home), I still have to go to the hospital several times a month — for doctor’s visits and blood tests (every 3 weeks) and my bone treatments (once a month).

But that is not all. No, no, that is not all.

I also have to go to the hospital for regular CTs, MRIs, bone scans, echocardiograms, ultrasounds, and whatever other tests or procedures are deemed necessary by my team of medical caregivers.

Everywhere I go, I meet other cancer patients.

Over time, many of the cancer patients get better and “disappear” back to their “old life,” the life without cancer.

But not everybody.

Some people, like me, are not going to get better. We meet regularly, week by week, month by month. We get to know each other. We get connected.

Many are like me. They are good. They are living with their cancer, and they are really living. Struggling, like me, but living. Even, I would say, living a good life.

But not everybody. Not all the time.

Sometimes people disappear and I do not know why. Have they simply switched treatment days or….? I am afraid to ask. Afraid to know.

It is hard. Hard to keep hearing about people dying of cancer.

Hard to keep my head buried in the sand, denying the threat of death, when death is all around me.

When I was first diagnosed, I stumbled onto the devastating statistics: five years after diagnosis, only 20% of women diagnosed with stage 4 breast cancer are still alive.

I desperately needed to find other young women who were living with cancer for more than 10 years, to know they existed, to know it was possible, to believe that I could be one of them.

It was surprised (though I should not have been) that it was not easy to find these women.

I contacted Sharsheret, a support organization connecting young Jewish American women with breast cancer, who connected me with an amazing woman. Though extremely private about her cancer, she generously shared details of her challenges and accomplishments. She was still working, full time, as a professor in a university! She inspired me, and gave me hope. I spoke with her several times, until I found more local support via Beit Natan.

I just found out that, a year ago, she passed away suddenly, leaving behind 8 children. She battled cancer for around 10 years.

Her sudden death shocked those around her. But not me.

I have already learned: cancer is devious.

A cancer patient can seem fine one day, and the next day is critically ill. The situation can revert back to being stable or the patient can be dead within a few weeks. There is no way to know.

We never know.

Every death is devastating. Another reminder that living with cancer is uncertain.

Everything can change in an instant.

——————————————————————————————————–
footnote: Death Be Not Proud, by John Donne (Link includes full poem and Wikipedia article)

As the health care bill makes its way through the Senate Finance Committee, and pink washes over the countryside, the American Cancer Society is campaigning for more birthdays. That’s right. More birthdays. Where in the past perhaps women have unofficially “stopped” having birthdays at 39, the ACS wants everyone to have more birthdays.

And you know what? I do too. I desperately want more birthdays. I want to turn 39, and 40, and all the lovely numbers that come after that. I want to blow out the candles with my kids, and see my littlest one turn 3, and 4, and become the big kid that he thinks he already is. I want to take my big kid to school, and teach both kids to drive, and be there when they get all gussied up for prom, or whatever the digital equivalent will be in 2025 (yikes!).

I’m taking steps to make that happen. And I’m telling you all about it every step of the way. I also talk a lot about mothers with cancer that I know from the other site, like Lyn, who just returned home from a double mastectomy and full hysterectomy … just a week after she finished chemo! Or our Aussie friend Jenni Ballentyne, who is living full-time at hospice now, seeing her son Jack on the weekend, who has fought the good fight, but whose time is near. Or Katie Homen, who we recently lost. But today I have someone else to talk about.

Sherry K. Miss Sherry, as my kids call her, as their faces light up with smiles. Miss Sherry was my son’s preschool teacher last year. Soft-spoken, kind, but determined, Miss Sherry always saw the best in the kids, and helped bring it out in them. The class of 3’s was close-knit, gentle with each other, and friends with all. In the early morning, both boys and girls sat quietly and did puzzles at the table. At 10, both girls and boys ran around on the playground. At noon pickup, they were the well-behaved class that came down the hall quietly, but with smiles on their face. Whether encouraging parents to leave notes of praise for good behavior the kids had done or telling us about the way our kids loved participating in the drama skits she planned, Miss Sherry was always gentle, and kind, and attentive, and all the things you’d hope your child’s preschool teacher would be.

Miss Sherry helped me, too. The first day I met her was only days after my oopherectomy, and I was so faint it was difficult for me to squeeze into the little chairs at the preschool-sized table. I was self-conscious about my arm, with the sleeve and glove that marked me as “different.” I didn’t want my kid to be seen as different, though. I didn’t want people feeling sorry for him, or have him referred to as “the one whose mom has cancer.” I didn’t want people to know. But Miss Sherry knew. And she pulled me aside and shared a little secret with me.

Miss Sherry is a 21 year survivor of breast cancer. And she is now doing wonderfully, and remembers it as a time long ago, not a driver of every day life. Throughout the year, she kept tabs on me as well as my child, asking about me when I wasn’t the one to drop Widget off at school, complimenting me on my hair as it grew out, or when my color returned and I looked like I had more energy. She was there when I had to go back to daily lymphedema therapy, again, and again, and sometimes Widget was late to school. She is still there at the school this year, and we smile as we pass in the hall. We know something that not everyone knows, you see. We know how very precious this life is, and how I almost lost this opportunity to tell you so.

Miss Sherry put a note in the preschool newsletter this week, reminding everyone to get their mammograms, do their self-exams, and remind “all the women in your life” to do the same. It may seem like a little thing, to say what everyone says in October, but for a 21 year survivor to even want to think about this dastardly disease again, much less show such compassion and outreach, means a lot to me.

And so I dedicate this post to Miss Sherry, and I wish for her, and for all of you, many, many more birthdays.

…

Is there a survivor in your life that inspires you, makes you laugh, or touches your heart? Join the ACS more birthdays meme by posting about her or him on your own blog, or in the comments here, and grab yourself this badge.

More birthdays. That sounds pretty good to me.

crossposted at Toddler Planet.

Posted in Uncategorized ]]>