Saturn cut from Susan's Luminaria

Luminaria for Mojo (that's a cutout galaxy which was super difficult to cut out)

I started writing this just after Susan died, but couldn’t bring myself to finish it. Today is the one year anniversary of [...]]]>

2012 Monrovia Relay for Life Luminaria in honor of Susan Niebur, @whymommy

Saturn cut from Susan's Luminaria

Luminaria for Mojo (that's a cutout galaxy which was super difficult to cut out)

I started writing this just after Susan died, but couldn’t bring myself to finish it. Today is the one year anniversary of her death on February 6, 2012. Today is the day to finish, add, publish. Today, like every day, I am missing Susan.

“All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others. For these are the only things that will remain.” –Susan Niebur

A year ago I was reminiscing back to the day I met Susan and jotted down the next few paragraphs.

“I follow you on Twitter” she said as she looked down to my name badge at March 2010′s, 41st Lunar and Planetary Sciences Conference, near Houston TX. I looked at her name badge, and my eyes popped out a little. I was talking to @womenplanetsci! Susan Niebur!

“I’ll see you tomorrow morning at the Women in Planetary Sciences networking breakfast, won’t I”? and before I could open my mouth to form the word of my reply, she was gone. She was down the hall inviting another woman she didn’t know to the networking breakfast.

On the day after that memorable and inspiring 2010 breakfast, I was in the conference hotel elevator with Susan and her husband Curt, who I knew from my work on the Cassini Mission to Saturn at JPL. Susan was rushing home, due to illness, I overheard in hushed elevator-abbreviated spouse-speak. I didn’t know anything about her cancer. All I knew about Susan was her science and her amazing personal presence. If you are lucky enough to meet someone in your lifetime with this electric aura, you’ll know it in an instant. I knew it. I knew she was a super-star the moment we met.

When I got home from that conference, I followed @whymommy in addition to @womenplanetsci on Twitter, found Susan’s Toddler Planet blog, and her Mothers with Cancer website. I read through several years of posts non-stop. I was sucker-punched with the news of her cancer, her cancer and science outreach, advocacy, and her fierce love for her family. My own sister Wendy had just completed breast cancer surgery and was about to start radiation at exactly the same time I met Susan. And at the same time my darling beloved husband Mojo was recovering from prostate cancer surgery, and had yet to receive his first post-op PSA. (Both are now three years cancer free.)

I was so very sad (heartbroken actually) to have missed the 2012 LPSC conference, held shortly after Susan died. Mostly, I wanted to feel Susan’s spirit there at the Women in Planetary Science luncheon, and share remembrances, laughs and tears with colleagues.

Oh, I miss her so.

I added this today: Four months after Susan died, it was time for our local Monrovia CA Relay for Life event. The cancer survivors take the first lap around the park, walking through and past hundreds of luminaria – hand decorated white paper lunch bags illuminated with a glow stick (no candles allowed, fire marshall regulations) inside – each remembering a loved one or thanking a caregiver.

Each year, the walkers stop and look at the moon or planets through our Sidewalk Astronomy club telescopes. This year, in addition to sharing the night sky with the crowds at my telescope, I made three luminaria. One was for my sister Wendy who is breast cancer free since 2010. One was for my hubby Mojo – who is prostate cancer free since 2010. The luminaria I made for Susan had a cutout of the planet Saturn for the light to shine through. I observed Saturn through my telescope, and thought of Susan, then colored the bits of luminaria cutouts to match the planet’s golden yellow hue, and made this special view of Saturn. I dedicated it to this amazing woman whose light and inspiration continues to shine on so many of us every single day.

Here are a few links I haven’t seen mentioned in other blogs:

But first, I really missed Susan’s DC Mom friends blog & Twitter posts. Getting a little caught up today.

Division for Planetary Sciences (DPS) of the American Astronomical Society (AAS) announcement

Dr Jim Green presents Susan with the NASA Planetary Science Public Service Award (video)

Susan speaking about Women in Planetary Science and leading NASA Missions (video)

NASA Solar System Exploration Susan Niebur’s NASA Solar System Exploration “people” page with great links!

Susan’s blog Turning awareness to action: donate, educate, advocate, volunteer

My cancer blogs with tips from Susan to Donate, Educate, Advocate, Volunteer

Here’s Emily Lakdawalla’s February 2012 Planetary Society blog about Susan.

I learned about an amazing partnership this week. A partnership connecting women who suffer from lymphedema (demystified below) with free compression sleeves (also demystified below)! This is cross-posted from my friend Susan’s Tod­dler Planet blog post “Can’t Afford Lymphedema Sleeves?”

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett [...]]]>

How a lymphedema sleeve works

I learned about an amazing partnership this week. A partnership connecting women who suffer from lymphedema (demystified below) with free compression sleeves (also demystified below)! This is cross-posted from my friend Susan’s Tod­dler Planet blog post “Can’t Afford Lymphedema Sleeves?”

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.

Crickett’s Answer to Cancer provide wigs, mastectomy and lymphedema products, massage, facials, and other pampering services, as a way to help women feel feminine and beautiful despite losing their hair and/or breasts. “By providing no-cost products and services, we honor these courageous women with breast cancer, as well as the memory of Crickett Julius.”

LympheDIVAs began in Philadelphia when two young breast cancer survivors, Rachel Troxell and Robin Miller, developed lymphedema, a side effect of breast cancer treatment that can cause permanent swelling in the arms. Their physicians and lymphedema therapists recommended a compression sleeve as the most effective way of controlling the swelling. When they researched the options for the sleeve they found that the only ones available were rough textured, heavy, hot, beige, and bandage-like. Frustrated and dismayed over the lack of options they had for compression sleeves, Robin and Rachel met with Kristin Dudley, a fashion designer, to discuss their idea of creating a more elegant and comfortable compression sleeve.

My friend Susan, played matchmaker and connected these two amazing resources. Now, lymphdema sleeves in floral, lace, tattoo and other designs or skin tones are available–at no cost–to women who can’t afford them through Crickett’s Answer! All this culminated on the very week Susan learned she has a fourth cancer/recurrence in less that four years.

What is the lymphatic system and lymphedema?
The lymphatic system is structured like a web, occasionally draining into small lumps or nodes that filter the lymphatic fluid. The system works through the pumping power of the body’s muscles. The muscles contract, increasing pressure within the lymph vessels, which causes the fluid to move. A series of one-way valves ensure that the fluid moves in the right direction. Lymphedema, the build up of protein rich fluid in the subcutaneous interstitial compartment occurs when either lymph fluid is impeded from flowing through the lymph vessels and lymphatic system or there is an excess of fluid that exceeds the carrying capacity of the lymph system. It collects in the subcutaneous and deep tissues causing swelling of the affected area and predisposes to chronic inflammation.

What are lymphedema armsleeves and gauntlets?
Lymphedema is managed and treated through a variety of therapies. Compression armsleeves and gauntlets are one such therapy. LympheDIVAs armsleeves and gauntlets are Class 1 (20-30mmHg) and Class 2 (30-40mmHg) medical devices. Like other armsleeves they utilize graduated compression, the highest pressure is at the wrist and acts as a pump to encourage the lymph vessels to push the lymph fluid toward the body.

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application.

Here’s the link to donate to Crickett’s Answer to Cancer.

And please share, or recommend Lymphedivas products to your friends, physical therapists, doctors, nurses, mothers, sisters, daughters and wives, or send them a note of thanks for sharing their wonderful products with those in need.

To help or raise awareness, please feel free to copy, tweet, or link my post on your blog, Facebook page, email lists, or print it out, stick it into an envelope and mail it to a friend. Send it to your favorite local newspaper, journalist or social media outlet. And ongoing never-ending thanks to awesome Susan for connecting these resources to each other and once again, sharing news, hope and awareness with us!

Every where you turn, you will be running into pink this month. Pink tic tacs, pink yogurt lids, pink Harry and David pears, pink airplanes, and even pink buckets of fried chicken! It’s Pinktober, aka Breast Cancer Awareness Month. There are some cancer survivors who hate the pink, calling it pink nausea, reminding us that [...]]]>

Every where you turn, you will be running into pink this month. Pink tic tacs, pink yogurt lids, pink Harry and David pears, pink airplanes, and even pink buckets of fried chicken! It’s Pinktober, aka Breast Cancer Awareness Month. There are some cancer survivors who hate the pink, calling it pink nausea, reminding us that cancer is not pretty.

The images of those who are dying of breast cancer aren’t shown alongside the pink ribbons or on the chicken buckets. And those with metasatic breast cancer, or incurable breast cancer do not adorn the pink promo advertisements, either.

Other cancer survivors — like my sister Wendy — sometimes carry a pink reminder of their survivorship, and not just during October, either. I understand both feelings and can agree with both sentiments.

This weekend, at a family get-together, Wendy had a recyclable black shopping bag with a big pink ribbon sewn into the front and back. It’s a gorgeous bag, and one that means something unique to her, as a breast cancer survivor. She sometimes wears her pink breast cancer survivor baseball cap from a cancer walk. Or a diamond “ribbon” pendant. When she does, sometimes a person will stop and ask a question, or just smile at her. But she knows these symbols carry more meaning to her, more than a purchase.

40,000 women and 400 men die each year from breast cancer, and that number is not going down. I’m glad Wendy is here to wear her pink cap, and carry her black and pink bag. I mourn for others who have lost their loved ones to breast cancer. I mourn the friends I have lost.

What I want to promote is funding for Breast Cancer Research and Metastatic Cancer Research, specifically. That is where I want my donations to go. I followed my friend Susan Niebur’s advice: to turn awareness to action: donate, educate, advocate, volunteer. I am trying to do all four this year, narrowing down my own small impact to breast cancer research. I want those numbers of men and women who die every year to go down, not stay the same.

Here’s a great post called 7 Smart Tips for Supporting Breast Cancer Awareness Month The Right Way. It distills Susan’s suggestions, suggesting you research the charities the pink grocery products support, that you ask where the money goes, and/or that you donate directly to research.

I joined the Army of Women 2 years ago in honor of my sister Wendy, who is cancer free now after breast cancer surgery and radiation. The army is looking for volunteers to partner with scientists and researchers seeking to unlock the key to preventing breast cancer. The Army of Women welcomes women (and men) of all ages, all ethnicities and all risks. It is a chance for women, and men too — who have had breast cancer or not — to directly participate in research, through questionnaires, phone calls, blood samples or diet and exercise studies. Volunteers receive emails with research studies, which they can choose to participate in or not. I joined this army to save lives, because there is no cure for breast cancer.

Here’s Susan’s suggestion blog: Turning awareness to action: donate, educate, advocate, volunteer

There’s a great Breast Cancer weekly tweetchat Mondays at 9pm ET, 6pm Pacific: Tweetchat #BCSM for those interested in a weekly Twitter dialogue between those who have breast cancer, those who treat breast cancer, research advocates, research foundations, supporting family members, and interested lurkers and learners (like me). For those who are on Twitter, look at these hashtags in addition to #BCSM: #pink #pinktober #IBC (Inflammatory Breast Cancer) #MBC (Metastatic Breast Cancer) #pinknausea (offensive commercialism) #redefinepink and find your place or your interests, and read along or join the groups. You don’t even need to be on Twitter to read the posts!

In the meantime, I know some people are sick of the pink, especially excessive commercialism or are disgusted by Facebook breast cancer memes. But I know others who embrace the pink because it did make them aware, helps them communicate breast cancer awareness, research, or provides their own storytelling backdrop. All of these scenarios are ok with me! We must find a cure for breast cancer!

My other blog posts about cancer awareness
Stay strong and fight cancer
Some thoughts about cancer
Lymphedema Sleeves Demystified

Some good links
Think Green for Karen: California Lyme Disease Association
Think Blue for Mojo: American Prostate Cancer Foundation
American Cancer Society Relay for Life

She wrote “I remembered how strong you were recently with Mojo and your sister’s cancer. How is your [...]]]> Today a friend told me about her mum. “She has cancer in her
bones, a long slow ticking time bomb” and my friend also also just found out yesterday her 48 year-old sister has breast cancer.

She wrote “I remembered how strong you were recently with Mojo and your sister’s cancer. How is your sister? Is her treatment going well?”

Compassion and fear both flowed in her words. I told her that my sister finished her radiation, and is hopeful that she has kicked cancer’s butt! Mojo is doing great too!

I wrote back to my friend immediately, and said among other things that I thought one thing that might help her was knowledge. Knowledge is power. That sure helped me cope with my sister Wendy and Mojo’s recent bouts with cancer. I read everything I could, and that made me feel in control. Well, a little bit anyway. We can wish and we can pray. We must be strong for our loved ones. I told her that she and her mum and sis might find comfort, strength, power and information by reading about others who are going through the same thing. We can all fight cancer, whether we are suffering from it now, are survivors or know someone who is fighting cancer now, or is fighting for someone who has lost their battle with cancer. We all are in one or more of these categories.

I won’t tell you to write a check, to walk or run, or anything else. When cancer touches you, you will act in the way that works for you. But for my friend and friends I don’t know yet, here are some ideas.

You can turn your fear into action. Donate, Educate, Advocate or Volunteer. Here are some ideas.

Join the Army Of Women. The goal is to recruit one million healthy women of every age and ethnicity, including breast cancer survivors and women at high-risk for the disease, to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all. I am very proud that Wendy and I joined the army. And at a recent club meeting, a friend came up to me and told me she had joined too!

Just about every town has a Relay for life cancer walk. Walkers, donations, volunteers and friends are all needed.

I want to work in every way to rid cancer from my family and every family, in what ever small or big way that I can.

And I want to honor those who have lost the fight by fighting back against cancer. I want to Donate, Educate, Advocate and Volunteer.

I want to be strong and fight strong against cancer! I hope you’ll join me!

I’ve been thinking about cancer a lot more than I used to. Mojo was diagnosed with a small but clinically significant prostate cancer in September 2009. And that’s when I needed to know more about cancer. His diagnosis began with a routine blood test during his annual physical which indicated an elevated PSA (prostate [...]]]>

I’ve been thinking about cancer a lot more than I used to. Mojo was diagnosed with a small but clinically significant prostate cancer in September 2009. And that’s when I needed to know more about cancer. His diagnosis began with a routine blood test during his annual physical which indicated an elevated PSA (prostate specific antigen). He went in for a retest, biopsy, and finally on January 19, the day after his 53rd birthday and 4 days after our 10th wedding anniversary he had a radical prostatectomy. His pathology report contained comforting words, clinically delivered. And the best news of all came three months later on April 19th when Mojo’s first post-surgery blood test came back with a PSA of zero. He is cancer free!

Two days after Mojo’s surgery, on January 21, my sister Wendy had a lumpectomy for non invasive stage 0 ductal carcinoma. Once again I needed to know more about this cancer which was hurting my sister. A few days after her surgery, she got the good news that the surgery removed the lesion with a wide margin of healthy tissue. A few weeks later Wendy was scanned, marked and stickered for twice-a-day radiation treatments over five days. Finally, in early March, Wendy was released from what she affectionately called BAM – the Borg Assimilation Machine, when the radiation hardware was removed.

Also in early March, while cancer was so heavy on my mind, I traveled to the Lunar and Planetary Sciences Conference (LPSC) near Houston, Texas. I met an amazing woman who I previously only knew from the social media science community. Little did I know that the very week I met Susan face to face for the first time at LPSC, as we stared at each others name badges, and exclaimed “I know you from Twitter“, she was having a recurrence of inflammatory breast cancer and had to leave the conference for tests, surgery and next steps. I didn’t have a clue at the time about her three-year battle with this deadly form of cancer. And once again I needed to know more about cancer.

I am happy that Mojo, Wendy, Susan and millions more are cancer survivors. I am so sorry that Susan is facing a recurrence of her cancer. I want to take action to find cures and answers about cancer! Not with my checkbook, but as a volunteer for research that will stop cancer from attacking my family and friends.

What can I do to help save Susan’s life and the lives of millions of others with cancer? What can I do for those in remission, those with a recurrence or a new cancer, or those who may get cancer in the future? I can become part of the research. One out of every three of us will get cancer, says the American Cancer Society, and right now there is no cure. But there can be. All we need is research. So my sister Wendy and I signed up for the Army of Women Breast Cancer research volunteer network. Its two goals are

• to recruit one million healthy women of every age and ethnicity, including breast cancer survivors and women at high-risk for the disease, to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all.
• to challenge the scientific community to expand its current focus to include breast cancer prevention research conducted on healthy women.

So it will come as no surprise that my sister Wendy gave our mother a diamond cancer awareness pendant for her recent 80th birthday. Wendy replaced the chain with two ribbons, a pink one and a blue one. The pink ribbon represents breast cancer awareness and the blue ribbon represents prostate cancer awareness. At the birthday party, I shed a tear for the family and friends I have lost to cancer, and for those in my family who are struggling with this deadly disease right this minute. But I was gleeful too. Our family all raised their glasses, and each in his or her own way were thankful to have Mojo and Wendy at the birthday table as our mother turned 80 years old.