February 6, 2012

Susan Niebur passed away on February 6, 2012 after a lifetime of love, crusades, and strength.  Over the last five years she lived with inflammatory breast cancer, a rare and aggressive form of breast cancer that presents without a lump.  She chronicled her life with cancer here on her blog Toddler Planet with honesty and emotion that were even more rare and aggressive.

She is survived by her family, friends, achievements, and the indelible marks she made on people around the world.  In lieu of flowers, please consider furthering Susan’s legacy through a contribution to the Inflammatory Breast Cancer Research Foundation.  Or please choose to make a difference somewhere, anywhere, to anyone.

I can’t begin to describe how her friends, those physically nearby and those she knew only on the internet, enabled her to carry on through five years of treatment and recurrence.  Many of you have commented on Susan’s strength and grace, but these were traits that she pulled from all of you.

Thank you all,

Curt Niebur  (WhyDaddy)

Sarah, from Sprucehill

May 12, 2011

My friend Sarah, from Sprucehill Farm and Mothers With Cancer, passed away last night after a KICK ASS fight against the cancer in her body. Sarah was diagnosed in 2008; we met here shortly after her diagnosis, and we became fast friends. Never well enough to drive at the same time, we never once met in person, but IT DIDN’T MATTER. We were still fast friends and tight always, here, on FB, on Twitter, on the blog, and on the MWC backchannel. Today, I grieve her loss.

It may be unseemly, but I admit that my grief is mixed with anger. There were not enough drugs to hold Sarah’s metastatic cancer at bay so that she could live to finish raising her darling children. There is not enough research on metastatic cancer now (only 5% of all cancer research), and I don’t know how to stop this from happening to my friends. Yes, I’m very grateful for her years since diagnosis, and I’m terribly grateful for mine, but I’m selfish — I want MORE.

This week is a good week.  (Unlike last, when I was in pain and my hair was falling out and my kids fell apart — it was simply unbloggable.)  I have energy to be out and about for half the day, and I’m spending it as a guest at a science team meeting.  I went yesterday, and it was so invigorating to be around scientists again, learning about advances in areas I used to live and breathe, and others that I knew only glancingly.  It’s good to be around people, and to have friends visit, and to take my kid to t-ball.  These are good days, and I work or play or rest and then soothe my bones each night by floating them in water, the only relief they can get from the meds that are trying to starve the cancer from multiplying in my own bones, where it has set up residence. 

My oncologist checkup is this afternooon; no worries, just blood tests to make sure my kidneys and liver still function, and to get the scrip for the next scan to see if the cancer has receded or grown in the last six weeks.  If it hasn’t grown, we stay the course and have Zometa infusion every 12 weeks and Femara daily.  If it has, well, then we move to something else.  “Something else” includes a number of chemotherapies that have been shown to work on primary tumors and may work for a time on metastasis, depending on the individual.  There are a number of chemotherapies now, and metastatic patients like me move through them one at a time after the gentler options are finished.  Like Sarah did.  Ever kind and ever brave, she nonetheless struggled with the treatments last Fall, moving from one to the next and starting Xeloda when I did.  It didn’t work, for either of us, and it put us both in bed.  The dirty little secret of cancer is treatment sucks.  The worst, though, is what everyone knows.  Cancer sucks, and it kills, and it’s not pretty in any way, shape or form.  And today, I’m angry that it took my friend, despite everything she did to fight the beast.  She did everything right.  She took the chemo, the drugs, the surgery, the hair loss, she raged against the weakness and she loved her family and her friends with a fierce passion every single day.

And still.

Rest now, Sarah.  You are loved, and you will not be forgotten.

The mini bike

December 30, 2010

Merry Merry and Happy Happy, everyone!

I’ve had a wonderful Christmas with family, following the doctor’s orders to rest and relax — with the possible exception of a drive halfway across the country to give my children a memorable, snowy Christmas with their Florida cousins and Midwestern grandparents. We all had a lovely time, and I have GOOD NEWS to share with you on the advocacy front, when the dust settles and the laundry is clean and we’ve all caught up on our sleep. For now, I’m offline, trying to get caught up, but I want to share with you a very special story that makes me cry — and smile, with hope.

This story was written by my friend, Lisa Moreau.

On the first day of Fall I received the horrible news that my eldest cousin was killed on his way home from late night farm work in rural Kansas.  I was in shock and was having a difficult time trying to accept the reality of the situation.  Why him, why now, what about his wife and two teenage kids???  Andy was more like an older brother to me than a cousin and I just wasn’t sure I was going to be able to get through his funeral.  I just wasn’t ready to let him go. 

When we got to his home I managed to keep myself together.  It was so good to see my extended family and reminisce about Andy’s fun times with all of us.  He always seemed to live life to the fullest.  His wife was struggling, but was on top of everything as usual.  I think we were all taking everything one moment at a time. 

On the day of the funeral, the family had been at the church for the flower service.  We were having a little refreshment in the fellowship hall when they said the service would begin in the main sanctuary, so we walked back together toward the main entrance of the building.  As we were entering, we couldn’t help but trip over a little mini bike (very small motorcycle) in the middle of the sidewalk with a hooded sweatshirt lying right next to it.  At the time I thought it was funny that someone had left it right at the entrance to the sanctuary, literally right in the middle of the sidewalk.  My first thought was that one of his fraternity brothers may be paying his final respects with a bit of flair– inside I knew Andy would have loved it!  I kind of put it aside in my head to figure out later and went in to try to say goodbye.

The day was hard. As I was checking in with Andy’s wife as we prepared to leave the church, I asked if she knew anything about the mini bike.  She smiled and said that the mini bike belonged to one of the boys that played football with Andy’s son.  He has a single mother and used the mini-bike to get places independently, since she worked two jobs and couldn’t get him to practices and such.  Andy and his son had befriended him and given him the nickname Frenchie.  Frenchie had told his mother that he wanted to make sure and go to all of the events surrounding the death of my cousin, to be there for his friend. 

Frenchie came to the house and sat with Andy’s son and the rest of the family the morning and day after the accident.  He came to the viewing, once again on his mini bike, although he had tucked it a little further from the entrance that night so we didn’t all see it.  The next morning he set his alarm to make sure he got to the church in time.  His mother later said she heard him get up and make himself breakfast and get going.  He arrived in his football jersey, to honor Andy, and had worn the hooded sweatshirt on top to keep the jersey clean of bugs.  Out of respect, he took off the sweatshirt when he entered the church and just threw it down next to the bike.  Andy’s wife said he even beat the motorcade to the cemetery.  She couldn’t believe he had the wherewithal to do all of this by himself, noting that Frenchie is only 12 years old. 

Now, Frenchie is a tall 12 years old, and his knees almost touch his ears when he rides his mini bike.  That weekend, Andy’s wife and brothers-in-law decided to do something that Andy would have loved and give them something to be happy about in the middle of all the sadness.  Andy’s brothers-in-law drove to the nearest store and purchased Frenchie a new scooter, big enough for a tall 12 year old to ride around town and presented it to him, with a personalized Frenchie name plate on the back, as the 12 year old and his mother returned from church on Sunday morning.  They told him that Andy would have wanted him to have it and thanked Frenchie for taking the time he took to give Andy’s family support. 

I know that Andy made a difference in my life, but it was so nice to hear and see that this young man felt touched by him as well.  This was a light for me and my family in the midst of a lot of darkness.  I know that good will still continue to come to the world even as I have to say goodbye to those I love.  Luckily, their love keeps on giving, even after they are gone.

Lisa is a faithful reader here and will see the comments.  Thanks for reading – and Happy New Year!


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.

More birthdays, please!

October 13, 2009

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.

Every time

October 11, 2009

Every time I think maybe I’ll step back from blogging, or change the subject to something cheerier, it happens that I get another moving message from a reader, who reminds me how important it is to keep talking about inflammatory breast cancer (the fast moving cancer WITHOUT A LUMP) and encouraging our researchers and politicians to make progress on finding not just treatment, but a cure.

Today I heard from Diane, who wrote to me 14 months ago when her dear sister-in-law Meighan was diagnosed with inflammatory breast cancer.  Diane says,

It has taken me three months to write you a note regarding IBC and my sister in law Meighan.  Today, I decided to write you to tell you I appreciate your advocacy and your hope and ongoing strength for so many women. Meighan, at age 40 lost her 14 month battle in June to her stage 4 IBC. She and my brother have 2 young girls and now we see how much this cancer has changed their lives. For Meighan, I walk in one of many breast cancer walks this month and I go and help another friend today pick her daughter up at preschool while she is in the hospital having surgery for her early stage Breast Cancer.  I wrote you when Meighan was diagnosed (2008) and I thank you for your information. I wish for you a cure and I will continue to try and do my part in raising awarness and funds.
Dave, my brother, will run the NYC Marathon in her memory and has raised $7,000 in one week for Fred’s Team. This is an organization thru Sloan Kettering where she had her treatments.  October is the most beautiful month here in the DC area and I too so very much want it to be about a cure for Breast Cancer.

Meighan was diagnosed after me, and now she’s gone.

This cancer is serious, folks, and it doesn’t mess around.  Please take a moment to check yourself, or to remind a friend of yours with breasts to check herself, and look not only for lumps but for ANYTHING UNUSUAL on one breast that is not on the other.  Here’s a quick visual (safe for work) that shows some changes you might want to call your doctor about.  And don’t worry about bothering her … if your breast is different than it was last month … and the other one isn’t … trust me, she wants to know.

In memory

September 30, 2009
Dear friends, I received the following letter today from a blogfriend, C.E., who walked with me in the Komen Race for the Cure two years ago, during my chemotherapy treatment.  It meant so much to me that day, and the memory still makes me smile.  But her letter didn’t.  Please read it, and leave your comments for C.E. for the loss of her friend.
Dear Susan,
My friend Simcha Esther (Shari) Gershan just lost her battle with cancer last night at the end of Yom Kippur, the holiest day of our year.  She made a documentary about her life, and was planning on attending the film’s premiere on October 22. Unfortunately she will not be there (but of course, will in spirit).
Perhaps your readers who live in the NY area would be interested in attending this event and learning from this inspiring woman.
Your loyal reader