Monthly Archives: December 2011

We Knew We Were On Borrowed Time

My husband, Ruben, fought cancer for 13+ years.  Diagnosed at age 24 with Hodgkin’s Lymphoma, much of his young adulthood consisted of surgery, countless rounds of chemotherapy, a stem cell transplant, and being told more than once to “get your affairs in order.”  Ruben was a very private man. Instead of wearing this reality on his sleeve, he preferred to make most people forget that he was sick, if they even knew in the first place.  A survey of his friends would quickly inform you that he was best known for his smile, his laughter, his ability to be present for others, his positive outlook, his thoughtful advice, his passion for music (especially U2) and his zest for life.  Cancer never defined him.

Our paths didn’t cross until Ruben was pretty far along on his journey, but I knew within days of meeting him that I wanted to go along for the ride.  And what a ride it has been.  I quickly decided I was “all in” – for better or for worse, in sickness and in health – and after dating for several months, we got engaged and later became husband and wife.  In the past few years I’ve learned more about life and love than most will learn in a lifetime.   Our days were filled with joy and adventure and depth.  While we rarely had a month that didn’t involve chemo or a scan or a series of appointments, I learned to follow Ruben’s lead – which meant that we focused on living.  We booked trips many months in advance despite an uncertain future.  We went to concerts straight from chemo.  We stayed present in the moment and allowed love, not fear, to plot our course.

On Ruben’s 37th birthday, we were told (for the second time since I met him, the 4th time since his initial diagnosis) that time was running out.  This time it was different – his organs were beginning to shut down in response to years of treatment.  Of course we were devastated.  I relied on a few mantras to counterbalance the devastation – I think we both did.  “We knew we were on borrowed time.  An end to the pain and suffering could be a blessing in some ways.  Thankfully we’ve spent our time living instead of dying.  We have no regrets.  How fortunate we are to have found each other.  What else do we want to do?

When I shared the news with a co-worker, she gave me two incredible pieces of advice.  “1) Don’t wait to sign on with hospice.  They’re services are remarkable and there is no reason to wait until you think the end is even closer.  2) Create a page on www.mylifeline.org.  You won’t have the time or energy to contact everyone in your life with updates.  You need to appoint a friend to manage communications and let her run with the website on your behalf.”  She was right on all counts and I’m so glad I listened to her.

I struggled at first because Ruben was so private.  I was sure he’d be opposed to openly sharing a part of ourselves online.  He didn’t want to be made into a story and he didn’t want anyone to feel sorry for him.  But he quickly saw the value in MyLifeLine.org and gave me the green light to make use of it.  He knew I couldn’t do it all on my own and that I needed to honor the way I process life’s challenges, too.  And that those who cared about either one of us needed to feel connected.

We made a list of tangible ways people could help us out (as well as what might not be helpful at all) and gave it to our “care coordinator” – a dear and devoted friend.  She used the site to communicate our needs and wishes in a variety of ways and thanked us regularly for asking her to be part of the journey.  When countless people asked me “what can I do?” or said “I’m here when you need me” I gave them the website address instead of saying “I’ll think about it and let you know.”  I wrote updates that allowed our loved ones to see that we were still living and loving with every ounce of our beings.  We were not a sad state of affairs.  I posted about fabulous meals we ate, wonderful shows we saw, and experiences like getting to meet Bono and putting our feet in the ocean.  And when I was sad, I didn’t hesitate to mention it.  So many friends thanked me for including them in these moments (the ups and the downs) and for giving them a place to share pictures, memories, and sentiments.

I learned that many people assume the worst.  If you don’t call or email them for a week or two, they think it’s all over.  If you don’t give a visual of what you’re doing, they think you haven’t left the house in weeks and are hooked up to machines.  MyLifeLine.org helped us to relay that we were facing this leg of the journey just as Ruben had faced everything else up until this point… with grace, dignity, love, laughter, humility, and faith.  Ruben’s passing was beautiful, just as his life was.  And instead of having to retell the story hundreds of times, I was able to post just once that he died peacefully in my arms.  Instead of spending the next 48 hours on the phone, I could post the information about his celebration of life so that people could gather and I could move on to the next task or feeling that needed to be dealt with.  Instead of staring at the ceiling at 4am when I couldn’t sleep, I got on the site and read the wonderful things people wrote about Ruben. I was lifted by the community of support.

We are all unique.  We have our own ways of communicating, coping, helping, hurting, and healing.  Our needs are diverse and our resources are limited.  We all need a lifeline from time to time. MyLifeLine.org was exactly what I needed it to be, even when I didn’t know exactly what I needed.  For that I will always be grateful.

Jen

________________________________________________

 

MyLifeLine.org Cancer Foundation believes that a strong support network is critical for cancer patients. Every day we provide free, personal websites to cancer patients and caregivers to help them easily connect with their family and friends, because no patient should ever feel alone.

To date over 2,700 patients have created “lifelines” (patient websites) with a community of over 45,000 friends, family, and supporters.

Please consider an end-of-year or monthly donation to help MyLifeLine.org support cancer patients and caregivers.

Review the levels below and choose which option works for you:

  • $25
  • $50
  • $75
  • $100 – supports one patient lifeline/yr
  • $200 – supports two patients lifelines/yr
  • $500 – supports five patients lifelines/yr
  • $1,000 -supports ten patients/yr and joins our Empowerment Society (special recognition on the Empowerment Society Page under News & Events on our website)
  • Other $ __________
  • I would like to contribute $ ______________ on a monthly basis

Choose from two easy ways to donate:

1.       Click here to download a form to send with your check made out to MyLifeLine.org.   Address: MyLifeLine.org Cancer Foundation, 55 Madison St., Ste. 750, Denver, CO 80206

2.       Click the Donate Now button below.

donate buttonThank you for your contribution and best wishes for a happy, healthy 2012.

Marcia Donziger

Founder/Executive Director

Personalized Medicine World Conference

MyLifeLine.org is proud to announce that we’re a Patient Advocate Partner of the Personalized Medicine World Conference

Personalized Medicine World Conference (PMWC) 2012- January 23-24

Location- Computer History Museum, Silicon Valley

The Personalized Medicine World Conference (PMWC) is the only fully integrated conference to examine Personalized Medicine through a practical lens. Launched by Silicon Valley entrepreneurs and investors in 2009, PMWC gathers thought-leaders of business, government, healthcare-delivery, research and technology into one information-rich, two-day conference. Sessions will include tutorials on Personalized Medicine, patient empowerment, mHealth, and new discoveries in the field. For more information, visit our website www.PMWC2012.com
Special Registration Discount of 20% for NFCR until 12/31!

Register here: http://pmwc2012.eventbrite.com/

Enter discount code: mylifeline12

CURE Magazine Coverage of the San Antonio Breast Cancer Symposium

The San Antonio Breast Cancer Symposium is in full swing.  CURE Magazine is there providing daily coverage of breaking news in breast cancer research and treatment.

Sign up for CURE’s breast cancer newsletter and you’ll receive CURE’s coverage of the San Antonio Breast Cancer Symposium, a leading conference for researchers and advocates.

You can also follow coverage throughout the meeting by reading blogs at http://bit.ly/sabcscoverage or following #SABCS on twitter!

Sign up for CURE Magazine’s e-blast to be sent December 15th with a comprehensive follow up of this year’s San Antonio Breast Cancer Symposium. http://bit.ly/vLkX78