Category: ACS Blogger Advisory Council

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ACS Blogger Advisory Council Cancer Mothering Parenting

In Memory of Susan Niebur

I found out yesterday that a mother I know of two young boys, who was fighting a very aggressive form of breast cancer, inflammatory breast cancer, had passed away.

It shouldn’t have been such a shock- Dr. Susan Niebur has been writing about her battle with cancer for years, on her blog, Toddler Planet.  She had already survived almost 5 years since she was diagnosed with IBC, and had lived almost 3 years beyond the time most IBC patients live.  Susan herself realized, one day she wasn’t going to be here- but that was always one day in the future.

I met Susan in 2010 in New York- we served on the American Cancer Blogger Advisory Council, and we had a meeting the day before the BlogHer conference.  Susan had an aura to her.  I knew the first moment I met her, she was fighting cancer. I didn’t know what kind, or the details, but she didn’t focus on that.   I remember when we were taking a tour of the Hope Lodge, she had to rest on the bed in one of the rooms.  I remember thinking at the time, having just fought thyroid cancer a year before, I was so lucky- that the cancer I had was very treatable and curable.  Yet, I was amazed that Susan was even there- working on a cause she believed in.

And at the time, she made me think. Not by saying a word, but by her just being there, living her life, doing what she wanted. It was such a powerful example for me.  Some people will never have to endure a sliver of what Susan went through, just to get a few more years of life.

It is so easy to take what we have for granted.  To complain about the small things, worry about really trivial things.  I realized I was lucky- for whatever reason. It could have been, just as easily me with IBC, fighting to live.  I had a second chance to live my life, and not have to battle every day just to live.  I didn’t have to lie down on a bed to rest, after walking down a hallway.  When I heard her speak in the meeting, and give some background into her condition, she didn’t have to say it- I knew she going to die- someday. But that day was far off.  She was strong, and determined. She had two little boys who needed their mother.

I followed Susan’s blog loosely the past year and a half since the day I met her.  If am to be honest, her blog made me uncomfortable.  I loved her words- she was such a gifted writer. But something about having a condition that can claim your life, shift your foundation, it hit too close to home for me. I don’t like to think about dying, and it breaks my heart to hear about cancer patients who have to fight so hard just to make it to another day, and to think about the children who will be left without their mother.

In some way I wanted to keep the vision I had of Susan in New York- she absolutely glowed when she was speaking, sharing her ideas, and working with people. I wanted to remember that about her.  She gave me hope and was an example to me, that no matter what comes your way because of cancer, you can make the most with whatever time you have left.

I read the last post Susan wrote on her blog, on January 22nd.  I saw it linked from my friend’s Facebook update.  My heart sank as I read her post- hospice was coming to her home, but Susan was still fighting. She wasn’t ready to call it quits or say good-bye yet.

I checked her blog daily, since January 22.  The one day I did not check it, Monday, was the day Susan’s battle with cancer ended.  I received an email from BlogHer yesterday their thoughts were with Susan Niebur’s family, and I knew she was gone.  That one day- that seemed so far off, had arrived.

Susan made me realize again yesterday, how precious life is, and how lucky I am- how lucky we all are really.  Not everyone survives cancer.  Not everyone has the quality of life they had before cancer. But everyone can live their life in the best way they can, and we can appreciate the small things. Being alive to give your child a hug. Telling your friends and family you love them. Following your passions.  Living your dreams.

Susan was an  astrophysicist, and had worked at NASA headquarters. She wrote numerous academic papers, but her mantra on her blog for her life was simple. It was, “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.”

For the short time I met Susan and worked with her, it will stay with me forever.  She was a great voice for cancer awareness, and surviving cancer.  She will be missed, and my deepest sympathies to her family and friends.

I found this a few weeks ago for another friend, whose mother had passed away, and I thought of it yesterday for Susan. The stars were one of Susan’s passions.

Rest in Peace, Susan.

“Perhaps they are not stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”

Author: Unknown

You can make a donation in Susan’s honor at The Inflammatory Breast Cancer Research Foundation

You can read more on Susan’s legacy at Care2 Make a Difference

Categories
ACS Blogger Advisory Council Cancer Health

Hope Lodge-New York City

When I was in New York, I was invited to tour the Hope Lodge facility, as a member of the American Cancer Society (ACS) Blogger Advisory Council I serve on.  

The ACS has more than 30 Hope Lodge locations in the United States and Puerto Rico.  Their purpose is to provide cancer patients and their caregivers a temporary free place to stay when having to travel to another city for cancer treatments. 

As I toured the Jerome L. Greene Hope Center in the heart of New York, I was deeply touched.  I had no idea the scope of services they provide for cancer patients.  There are lovely and homey rooms, which don’t feel like hotel or hospital rooms.  Each floor includes a kitchen, dining area, a quiet lounge, and laundry.  In addition, Hope Lodge helps cancer patients with the healing process.  There are support programs which include meditation, touch therapy, support groups, yoga, and nutritional seminars.  Patients also have access to ACS services such as Look Good…Feel Better, the Wig Program, and Man to Man. 

If a patient is staying at Hope Lodge- all of it is free.  They have 60 rooms at Hope Lodge and they are booked every night, months in advance.  To stay at Hope Lodge, a patient has to be referred by a hospital social worker, as they try to serve the patients with the greatest needs.  I was very impressed as the director told us even if a cancer patient isn’t staying at Hope Lodge, if they are in the city for cancer treatment, they can still come and use all the services free of charge. 

I took a lot of pictures of the facility, but there is a virtual tour you can take as well.  I think that captures the lodge much better than the pictures I took. However, as we walked by the common area, there was a party going on.  There was a woman playing the piano, patients and their caregivers listening, talking, and visiting.  There was so much food, much of it baked by volunteers.  There were beautiful cookies which volunteers baked.  These pictures aren’t on the on-line tour:

 

This really touched me because of the amount of time, care, and sense of community that exists here.  We toured the facility for an hour, but you could tell there was a lot of love, and dedication, not just by the staff, but by the volunteers, caregivers, and patients themselves.

While I was listening to all the information, and seeing this facility, I couldn’t help but feel a bit overwhelmed in the facility.  It is a wonderful place for any cancer patient.  I wish there was a Hope Lodge in Denver, because I would definitely benefited from their services, even if I had not needed lodging. 

The moment that touched me the most, was as the tour was finishing and I was having a few words with Karen Radwin, the Senior Managing Executive.  She had taken us on the tour and had answered all of our questions.  We were standing somewhat away from the group and I told her I had thyroid cancer last year.  I am sure she can’t count how many times she hears cancer stories, but she listened to mine as if it was the only one she had ever heard.  She asked me questions, no one else had ever thought to ask about my cancer and recovery process.  Even though our conversation was just a few minutes, it still is with me.  

I’ve thought a lot about how to write this post.  There are so many wonderful things Hope Lodge provides, it is hard to pinpoint just a few.  But as a cancer survivor myself, the element I felt the most, from the moment I walked in, and what was confirmed by the tour was care.  The staff really cares and does whatever it can to help cancer patients.  Our medical professionals are so busy, it isn’t always possible to get the feeling of care and love in a hospital. 

The fact these lodges exist to provide caring and healing services to cancer patients is priceless.  It is a major step in the recovery process from cancer, and I am so glad Hope Lodges are there for cancer patients and their families in the direst time of need. 

No asks to have cancer.  No one really plans to have cancer.  Not everyone knows what to say or do when a loved one has cancer.  If you live near a Hope Lodge, seek them out.  They can help, even if the patient isn’t staying there. 

In a world where a disease like cancer is ruled by medical diagnosis’s, invading procedures, surgeries, and drugs, to be able to have services on the flip side, care, love, understanding, and support, is invaluable.  It is the difference between surviving cancer, and healing from cancer.

Categories
ACS Blogger Advisory Council Cancer Family & Friends Mothering Parenting

Home & Vacation

I am back from New York.  Wow!!  I can see why people either love or hate it.  I loved it!  It was such a different experience for me.  I’ve lived near Boulder, CO almost my entire life.  I’ve been to Los Angeles several times, but New York was by far the biggest city I’ve ever been in. 

People were nice and very helpful.  No one was rude or had an attitude.  I felt very safe walking around Times Square at night- there was only about 50,000 other people around, police all around, and almost every shop and restaurant was open.  There was only negative thing happen, and that was on the way to the airport on the way home.  The taxi I took smelled like gasoline, and I was on the verge of getting really sick by the time I got to the airport.  Other than that, everything went great. 

The tour of the New York Hope Lodge was amazing.  I am going to write a more detailed blog post about that, but I was so touched by what they do for cancer patients.  As I listened and saw what they did, I thought back to my own experience with cancer last year and thought it was great there are facilities like this that help the patients with the most need.  Especially in a place like New York, where it is so expensive to stay long-term.  I was impressed to learn there are 40 other Hope Lodges in the United States.  It was clear to see Hope Lodges are a great asset in helping cancer patients and their caregivers fight cancer. 

I hope to write more about New York soon (with pictures!), but I had a long day at work yesterday, and the boys and I are leaving tomorow for our vacation together.  We are going with my dad and step-mom to Lake Superior in the Upper Peninsula of Michigan.  My dad has a relative there who lives across the street from the lake.  The boys are beyond excited for a beach/water vacation.  I haven’t been able to go anywhere with them for two years on vacation, so I am looking forward to this time with them. 

As much fun as I had in New York, the boys were never far from my thoughts.  I missed them!  I kept thinking how much they would enjoy the buildings, the firetrucks, the police cars, and all the sights and sounds.  I decided I am going to take them there one day- when they are older- so they can experience New York and all the amazing sights, before they are in their thirties, like me.  🙂  I liked the perspective it gave me, and I want my sons to be able to live and experience other places then where we live. 

As I flew back into Denver, I saw the few tall buildings on Denver’s skyline.  They definitely didn’t look like much after staring at New York’s massive and countless skyscrapers for five days.  They looked tiny by comparison.  But there were mountains, and open spaces.  I could see miles in any direction- something you don’t get to do in New York from the ground.  There wasn’t a cloud in the sky, and they announced it was 75 degrees.  It was a perfect Colorado day, I was going to see Ryan and Cole, and I knew I was home.

Categories
ACS Blogger Advisory Council Family & Friends losing a parent

New York!

I am writing this post from my hotel room near LaGuardia airport in New York City!  I arrived here this evening, and so far I love it.  I have always imagined myself going to New York, but it has never happened- until now.

Last year when I was recovering from cancer surgery and extremely hypothyroid, the annual BlogHer convention was occurring.  I was supposed to have gone with my good friend, Amy, but obviously cancer changed that.  Amy had found out that BlogHer ’10 was going to be in New York, and she entered us in a contest to win a trip to it.  We were finalists!

I was so touched, and had told my mom about the possibility of Amy and I winning the trip.  She told me I had to go to New York. She had been there several times in recent years for her job. She told me even if we didn’t win the trip, I had to go with Amy to New York this summer- she assured me I would love it.

My mom had asked me a few times to go with her, on her business trips, but I never did. I was too busy, or didn’t want to leave the boys, or it wasn’t a good time for me to go.  There was always a reason not to go.

I decided to boycott BlogHer ’10, after I had already obtained tickets because of their Nestle sponsorship.  But I had also been invited by the American Cancer Society (ACS), by the Blogger Advisory Council I serve on, to come to New York for a tour of their Hope Lodge, a meeting, and an event.  Amy decided to attend BlogHer, so our plans were set.

None of the flights would have given me enough time to arrive and be able to attend the ACS event tomorrow on time, so I came out today- by myself.  I was a little bit anxious about coming here alone, but I’ve been fine.  All the people who have helped me have been wonderful, and Amy is arriving tomorrow. I only have to get myself from this hotel to a hotel in Times Square, but I can handle that.  😉  The man I sat next to on the plane even gave me an app for the iPhone that shows all the subway routes, so I am feeling more confident about the subways too.

But all I could think about today was my mom.  I thought about how much I miss her and how much I regret never taking the time to come to New York with her.  As the plane was approaching New York, I touched my mom’s bracelet and I felt her presence- just a normal feeling- like she was sitting next to me.  the sun was setting and it was a gorgeous scene When we landed I got tears in my eyes.

My mom wanted me to come here.  She told me I should do whatever I could to get out here this summer.  My mom loved to travel, loved New York, and clearly she wanted me to experience this.  I got tears in my eyes because I get to do just that.

When I walked off the plane, I was calm-not nervous.  I was traveling alone to a huge city, but I didn’t feel alone.  I felt my mom’s presence with me, and I think- in that place where the sun shines off the clouds at sunset, painting vibrant colors- my mom is with me in New York.

Categories
ACS Blogger Advisory Council Breastfeeding Current Events Pregnancy & Birth

BlogHer ’10, Nestle Sponsorship, & Integrity

I’ve wanted to attend the annual BlogHer Conference for four years now, and I was so excited a month ago when my plans were finalized, so I could attend. It is being held in New York in August.   I was also very excited I would be going with one of my best friends, Amy from Crunchy Domestic Goddess.  Amy sparked my interest in blogging years ago, and she inspired me to start my own blog.   

Amy and I live in neighboring towns, so we have been working on getting our airfares, so we can fly to New York together.  While we were exchanging e-mails yesterday, she asked if I heard that Stouffer’s, who is owned by Nestle, was now listed as one of BlogHer’s ’10 sponsors?  I had seen a tag-line or two on it, but had not had time to read up on it.  Amy sent me Annie’s, from PhD. in Parenting, blog post, on this subject. 

As I read Annie’s post and did a bit more research myself, my excitement over BlogHer ’10 turned to disappointment.  Nestle is one of the most boycotted companies worldwide since 1970, for engaging in many questionable ethical business practices.  I personally have an issue with their constant efforts and marketing to undermine breastfeeding.  I avoid buying anything Nestle when at all possible.  Like Annie though, I don’t question others about it, or ask my friends if the chocolate chip cookies they made contains Nestle chocolate.  Like most big businesses, it is nearly impossible to avoid Nestle and their brands completely. 

Eating a chocolate chip cookie from a friend is different though, when faced with the knowledge the conference that I really want to attend is being paid for in part, by Nestle.  Another dilemma I have is my conference tickets were wait-listed.  BlogHer specifically said if they were able to get more sponsors, then more tickets would be available.  Nestle was not listed as an original sponsor. It isn’t too far of a reach to conclude the reason I even got a ticket in part, is because of Nestle’s sponsorship.  

I am frustrated that BlogHer would even consider, let alone accept Nestle as a sponsor.  I accept advertising for my blog through BlogHer, but I have specifically opted out of accepting any formula companies, such as Nestle.  BlogHer is aware of the boycott and the issues surrounding Nestle.  I would have rather not received a wait-listed ticket, and not have been able to attend the conference, than attend with this now black cloud of controversy surrounding it.

It bothers me BlogHer, which supports women in so many aspects, accepted Nestle as a sponsor, when their business practices hurt so many women and their children, especially the most vulnerable in developing countries. 

As a member of the American Cancer Society Blogger Advisory Council, there is an event in New York the day before BlogHer, they are sponsoring for me.  I will be in New York to attend that event.  That is a silver lining- I will be able to see firsthand some wonderful programs the American Cancer Society has, and have no moral quandaries about participating in it.

I wrote my beliefs about the blogging event Nestle hosted last October, and the responsibility we have as bloggers. Two sentences I wrote jumped out at me as I re-read my own words, in light of this dilemma:   

…as bloggers, we need to be responsible to something greater than just a company’s marketing campaigns.

People turn to blogs for honest and trust-worthy information.  If we allow ourselves to be “bought” by any and every company that comes a-callin’ should we be surprised when our collective reputation as a source of unbiased, accurate, and honest information is tarnished and eventually weakened?

Do I attend BlogHer and justify the reasons for myself?  How can I stand by what I wrote about being “bought” when for all practical purposes, I am doing the same thing, now that I am aware Nestle is a sponsor? 

There are bloggers who are boycotting Nestle who are still going to attend, and try to raise awareness on this issue. Others are boycotting BlogHer ’10.  That is their personal decision they have every right to make for themselves.  I am not saying they are right or wrong, but I am going to have to decide for myself what the right decision is.

I have missed BlogHer every year, and right now I feel I could missboycott BlogHer ’10 because Nestle is a sponsor, and I would be fine.  Yes, I’d be bummed, and I would miss out on a lot of good information, community, friends, and fun.  But I would also be able to know without a doubt, I did not compromise on an issue I feel very strongly about when it mattered.  Integrity is easy to maintain, when there is no pressure to maintain it. 

I am considering all my options, and will make a decision soon.  I have spent the last three and a half years, building a loyal readership of my blog, and I appreciate every reader I have.  I feel I have a responsibility to my readers as well.  I don’t want to be a blogger who writes about how important breastfeeding is to babies, women, and our society, and then attends a conference sponsored in part, by one of the biggest companies who undermines it on a global scale. 

One truth is the swing of the sentence, the beat and poise, but down deeper it’s the integrity of the writer as he matches with the language~ Don DeLillo