trebuchetSpoiler note – this blog is a call for action. Read on only if you are going to act!

Life is filled with serendipity. Paraphrasing Forrest Gump “…It is a box of chocolates; you never know what you are going to get…..”

Along those lines, I was most fortunate to fall into an irreverent, eclectic group of people when taking the scary step of moving to Pittsburgh to attend, and subsequently work at, Carnegie Mellon University.

Our collective predilection was to roll up our sleeves, work ridiculously hard, and then play even harder.

During that time, I developed a lifelong friendship with a uniquely gifted engineer who managed several research and teaching labs. He was simultaneously rude, crude, funny as heck, humble, and one of the classiest people I have ever met. Over the years, we laughed a lot and did some really zany things!

For example, one New Year’s Eve, my friend called at about 5 PM and said he would put my wife and me up if we attended a party at his place. Of course, we said yes and promptly drove 300 miles across two states to get there! We arrived just before midnight and along with 40 other people, danced all night to Devo, New Wave, and who knows what else! True to his word, he covered our hotel and breakfast.

My friend’s sardonic, off-beat outlook also brought new meaning to “hands-on” experiential engineering education. In a previous post, I talked about his nationally recognized “humorous engineering 101” class. One example assignment involved student teams designing and building Monty Python-themed trebuchets that could float, carry a 6’-6” 300 pound instructor, and toss a 20+ pound concrete cow really far. Of course, my friend wore a cow suit and bovine-horned helmet to play his part in boarding the craft, arming the trebuchet and launching the cow.

For all of his lunacy, however, my friend deeply touched thousands of lives through his big-hearted acts. In one instance, one of his students was going to have to drop out for lack of funds only to find their tuition bill had been mysteriously paid by an “anonymous” donor.

In another, a young student’s father unexpectedly passed away and my friend really stepped up to help her deal with that.

More recently, when I was fundraising for leukemia research, he contributed handsomely and set up an auto-pay with no end date. He called me “Superman” for riding as far as I do and said I can count on him for forever.

I could go on for hours about how he touched people, but you get the point

Late this past August, cancer took my friend away. He had recently started on a new immunotherapy, and I had real hope given the efficacy of these new approaches.

But now he is gone, just like that. Although the world is indeed poorer, my friend would want people to focus on the difference he made. True to form, he also made sure that nobody would make a fuss about his passing.

As somebody who is living with an incurable cancer, albeit slow growing, it is sobering that I could easily be the next person whose number comes up. Given its slow grind and the hope created by new therapies, it is easy to forget that CLL is still cancer and every bit as deadly.

So now for that aforementioned call for action. For all of the advances in this field, cancer continues to take people away. And equally regrettably as a consequence, many remembrances like this one continue to be painfully written as a brutal reminder that cancer plays for keeps. As my friend would do, we need to continue rolling up our sleeves, work hard to defeat cancer, and play harder wherever possible.

Please find a way to make a difference and when you do, act meaningfully on that. Even the smallest step gets us that much closer to our collective goal.

Please share your thoughts in the comments box about how you are making a difference.

Thank you for reading!

Always hope. Never quit.

–           C.J. Chris

andrew-estherThose of us who have loved ones who have dealt with a cancer journey are always “along for the ride.”  The emotional and physical roller coaster is never exactly the same for any two people, but the road is always bumpy, often filled with great challenges, fear, tears…the works…But those who travel it together most often find their inner strength together and reaffirm their deep love for each other along the way.  And if a care partner (or caregiver) is a medical professional, the process of giving of their expertise and compassion is given selflessly and is priceless.  In some ways, that is one of the very few gifts cancer gives any of us.

One of our dear cancer survivor friends, Derek Caine, found the words and voice recently to share his deep gratitude for the caregivers and care partners in his journey—and the journeys of others like him—in a wonderful song he has written and performed Song for the Unsung. Derek is from Halifax, Nova Scotia, and was diagnosed with chronic lymphocytic leukemia (CLL) in 2004.  After his diagnosis and six months of treatment, Derek became a passionate patient advocate and dove into music as a creative form of expression. He is a board member of the CLL Patient Advocacy Group in Canada, a director of the Little Derek Leukemia Fund which provides financial support for other patients in his region, and he has written songs about cancer survivorship and entertained many audiences in person and online.  Having met him, he is a delightful person, and you can meet him on one of our Patient Cafés.

derekAfter hearing his song, I felt compelled to share it here with our Patient Power communities.  I know that caregivers and care partners don’t do what they do for thanks—they do it because they want their patients and loved ones to be happy and healthy once more, to be around for the long haul, to experience many more of life‘s great surprises ahead.  As a care partner, I know that life at its very best is a shared experience and whatever we can do to make it happy, healthy and a smoother road for our loved ones, is all the better.  In the end though—a thank you is surely a nice thing to have.

Here are the lyrics to this heartfelt tribute to all the caregivers and care partners and out there, from Derek.  Thank you, Derek, for this gift to all of us!

 

Our message is loud

Our message is clear

To the ones in this world

Who so well hide their fear

 

Caregivers, you rock

Time to do our part

And show you our love

From deep within our heart

Thank You, Thank You, Thank You, Thank You

 

You care for us you love us

And it’s surely no disgrace

For helping us cope with

The awesome challenges we face

 

You’re our doctors and nurses

Psychiatrist as well

And your love is overwhelming

Without you life would be hell

 

It’s so difficult to tell you

Of our fear and our pain

That without you close by

Life would be so hard to sustain

 

You’re male and female versions

Of Florence Nightingale, it’s true

Much more we cannot say, except

Thank You Thank You Thank You

 

What words of thanks would you like to tell your care partner? Tell us in the comments section.

Esther Schorr – Care Partner of Andrew

Diagnosed with CLL in 1996 and myelofibrosis in 2011

duke-margolisIn December, after the American Society of Hematology (ASH) meeting in Orlando, Florida, I wrote a blog on Patient Power called “Impatient Patients”. I highlighted four patients who aren’t sitting around, waiting to be told about the next best treatment for their blood cancers. Instead, they are mobilizing networks of patients to push for more effective medicines, urging participation in clinical trials, and raising money to direct research beyond the efforts of pharma and government.

On September 7th, I had the opportunity to deliver the message about “impatient” patients to a room filled with clinicians, statisticians and FDA experts. The general subject was “MRD (minimal residual disease) as a surrogate end point in hematologic cancer.” I represented Patient Power on the CLL panel headed by CLL Specialist Dr. John Byrd of the Ohio State University. The newly formed Washington, DC-based Duke-Margolis Center for Health Policy sponsored and organized the discussion.

At issue is whether a minimal amount of detectable CLL can be considered a therapeutic end point for treatment. In other words, does 21st century technology allow MRD to be an acceptable measure of treatment success for CLL patients?

You gather a room filled with docs, data crunchers, and policy experts and – you guessed it—there’s no consensus yet on how to proceed. Wisely, caution remains a watch word, especially where patient safety is concerned. However, the question hovering over the discussion: Is the FDA being too cautious in its regulatory approach to drug development and treatment? Can it take advantage of molecular blood testing to refine its procedures and reach conclusions more quickly and accurately about new meds?

carol-dukeSkeptics of MRD as a therapeutic end point recognize that this is not your father’s technology or your father’s patients. We patients want therapies made available to allow us to live full lives, even if that means the drug won’t cure us. I’m almost 67 years old. Do I need a cure or will an MRD measure provide the treatment I need to enjoy the next 15 to 20 years? Many of us cannot afford to wait another 10 years for development of the next best drug or for the results of clinical trials, which attract only 3 to 5 percent of all patients. A serious, thoughtful discussion is underway. But with no consensus, your voice is needed to move the needle on what comes next.

If you are interested in the replay of Sept. 7th forum, you’ll find it on the Duke-Margolis YouTube Channel. By mid-month, you should be able to access the individual sessions, which include multiple myeloma (MM), acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL) along with CLL.

Wishing you good health and great questions,

Carol Preston

[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now?” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. This week, Jan Woolley shares with us her latest news.  For previous conversation with Jan, click on the links below.]

Powerful Patients Living Well With Myeloma

Jan Woolley: Living a Full Life With Myeloma

where-are-they-now

 

I am happy to provide an update about my experience with multiple myeloma. I was initially diagnosed in April 2007. At my diagnosis, I was told that the median life span was about four years. It has now been nine years, and I am still living with myeloma and experiencing a full life in spite of ongoing treatment.

Travel:

In the past five years, my husband and I have traveled to:

  1. Turkey
  2. The Maldive Islands
  3. The Antarctic
  4. Israel, Egypt and Jordan
  5. Paris
  6. Hungary and Austria
  7. The Galapagos and Ecuador
  8. Indianapolis, Indiana for my 50th medical school class reunion
  9. San Juan Islands
  10. Vashon Island

Family:

Three grandchildren and two great-grandchildren have been born since I was last interviewed by Patient Power.

Relocation:

We sold our house of 30 years about two years ago and moved into an apartment complex in the same community.

Hobbies:

This year I purchased an electronic keyboard and began taking lessons. I also started crocheting with a group of friends.

Not-So-Fun:

Chemotherapy is a regular part of my life. Bortezomib (Velcade) left me with neuropathy, requiring me to walk with a cane and to use caution to avoid falls.

Suppressed immune function led to an ear and mastoid sinus infection requiring a brief hospitalization followed by 2 weeks of intravenous antibiotics. Hearing loss and need for a hearing aid resulted.

Recommendations for others:

  1. Take antidepressant if needed – having myeloma or any other chronic illness often causes depression. This was certainly the case for me, and staying on an antidepressant helps me weather the storms more comfortably.
  2. See a therapist who has experience with chronic illness.
  3. Exercise – when I was initially diagnosed, I felt crummy from the chemo and didn’t do much exercise. I now work three times a week on strength training and walk three to four times a week.
  4. Get adequate rest.
  5. Eat a healthy diet.
  6. Social activities – moving to an apartment has given me more time and opportunities for social activities.
  7. Hobbies – I find this helpful and motivating.
  8. Try alternative treatments ­– I have used acupuncture and see a naturopath in addition to a physician.

My current thoughts about having multiple myeloma: I am optimistic that I still have a considerable amount of time to live. Treatments are rapidly appearing and evolving.

Living well with myeloma,

Jan W. Woolley

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I’ve applied to a lot of companies over the years for a variety of jobs. You know how it goes. They tell you what type of superhero employee they’re looking for, and you tell them how your particular superhero cape comes in every size, shape and color that they happen to need. You land the […]

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[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. In this blog, Diana Riley shares with us her latest news. For previous conversations with Diana, click the link […]

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[Editor’s Note: This blog has been reprinted by permission. It was originally printed in the publication, Patient Resources.] In March 2008, at 52, Randall (Randy) Broad was active and in good health, except for a nagging cough. Chest X-rays and an endoscopic examination showed nothing and, according to his primary care physician, his symptoms didn’t […]

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World Lung Cancer Day…August 1, 2016. Four years ago was the very first World Lung Cancer Day. It isn’t a fun day like Grandparents Day or a birthday. It isn’t a silly day like National Pizza Day or Hammock Day…There are 365 days each year, and we celebrate birthdays and anniversaries, graduations, and weddings. World […]

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