Posts tagged ‘appendiceal carcinoma’

March 17, 2017

Delivering More of My Own Bad News

If you’re a longtime reader of my blog, you know that I’ve been in an ongoing battle with cancer since 2014. If you’re a relatively new reader here, I want you to know that I have an exceedingly rare form of cancer known as Appendicial Carcinoma with Pseudomyxoma Peritonei (PMP).

So, why am I once again writing about my health?

The reason is that I’ll soon be undergoing another extensive surgery. That means that for now, and for at least the next few months, I need to focus 100 percent of my energy on preparing for surgery and focusing on my recovery. So, I’ll be taking an indefinite leave-of-absence from my blog, professional life, and most social media activity. I look forward to re-engaging as soon as I am able.

Meantime, if you want to learn more about my situation, just search “Pseudomyxoma Peritonei” on this site using the search bar at the right.

I also want to thank you for being a loyal blog reader and for being supportive of my various efforts, in various ways. I’m already looking forward to the day when we can re-engage.

Finally, I want you to know that I recognize that we all face challenges. So, I’m going to share with you just some of the quotes that have lifted my spirits during my darkest hours; I hope some of them will inspire you as well:

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February 12, 2016

Do You Really Know Your Donors? — Part 2

In a cautionary tale earlier this week — Part 1 of a two-part series — I looked at the missteps one nonprofit organization took by not taking the time to get to know one of its loyal donors. In Part 2, I now examine a horrible fundraising appeal from an organization that actually knows its potential donor quite well, though it failed to leverage that knowledge.

Stethoscope and Piggy Bank via 401(K) 2012 via FlickrI originally got the idea for this post from one of my readers who contacted me with a link to an interesting New York Times article: “A New Effort Has Doctors Turn Patients Into Donors.” My reader wanted to know what I thought of the emerging trend of having doctors actively contact their patients for fundraising purposes.

I delayed writing about this subject because I have mixed feelings about it. Then, in December, I received a year-end appeal from my surgeon at the University of Pittsburgh Medical Center Cancer Center. The letter helped crystallize my thinking.

First, let me share a bit of background. A recent study by Dr. Reshma Jagsi, a radiation oncologist and ethicist at the University of Michigan, was published recently in The Journal of Clinical Oncology. It was the first major examination of the role of physicians in fundraising.

The New York Times reported:

In an unprecedented survey of more than 400 oncologists at 40 leading cancer centers, nearly half said they had been taught to identify wealthy patients who might be prospective donors. A third had been asked to directly solicit donations — and half of them refused. Three percent had been promised payments if a patient donated.”

Involving doctors in the fundraising process raises a number of ethical concerns. Dr. Arthur L. Caplan, head of the Division of Medical Ethics at NYU Langone Medical Center, shared some of his concerns with the Times:

Patients may be emotionally vulnerable; doctors have very close ties to their patients, which can strain asking on both sides; and the fact that incentives to ask sometimes skew toward the doctor’s own program rather than the most needy areas of the hospital.”

Another issue is, how will giving or not giving affect the level of care, or perceived level of care, from the doctor? Will patients feel coerced to give?

While I see the enormous potential for ethical pitfalls, I also see the significant potential benefit of having doctors involved in the fundraising process. The issue is how and when they are involved as well as the quality of development training they will receive.

For example, if I’m half-naked in my doctor’s examination room, I certainly do not want to receive an ask for a contribution. If I’m drowning in hospital bills, I’m not going to be particularly receptive to a fundraising appeal. However, if a development staff member wants to have lunch with me and my doctor to discuss the physician’s latest research, I’m perfectly amenable to that.

There are right ways and wrong ways to involve doctors in the fundraising process.

UPMC DM Appeal

UPMC Cancer Center Direct-Mail Appeal.

That brings me to the letter I received from Dr. David Bartlett in December. Dr. Bartlett is a world-class oncologic surgeon and medical researcher. He is one of the leading experts dealing with Appendiceal Carcinoma with Pseudomyxoma Peritonei (PMP), a very rare form of cancer I am currently battling. (You can learn more about my fight by clicking here.)

Dr. Bartlett knows me very well. In addition to knowing me as a patient, he knows that I’m a professional fundraiser who shares his passion for finding a more effective treatment for PMP. The development staff also knows me. Prior to going for surgery two years ago, my wife and I reached out to and met with one of the development professionals for the UPMC Cancer Center.

Yet, despite their knowledge of me, they sent me a piece of garbage intended as an appeal letter. The direct-mail solicitation was definitely not the way to involve my doctor in the fundraising process.

Let me outline the ridiculous mistakes that the UPMC Cancer Center made:

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January 25, 2016

“It’s Like Déjà Vu All Over Again.”

Recent events in my life remind me of a famous quote from baseball Hall of Fame catcher Yogi Berra:

It’s like déjà vu all over again.”

Since 2014, I’ve kept my readers informed about my battle with a very rare form of cancer, Appendiceal Carcinoma with Pseudomyxoma Peritonei (PMP). My last post on the subject shared the great news that I was in remission despite how advanced the disease was at the time of diagnosis.

Enter Yogi Berra.Yogi Berra Baseball Collection via Flickr

Well, the cancer has returned.

At some point, I’ll require another surgery to remove as much of the disease as possible. Meantime, my medical team has recommended chemotherapy in the hope that it will beat back the cancer and delay the day when surgery will be necessary, by months or even years.

After four rounds of chemo, my two blood cancer markers are on the decline. The chemo is working! So, I will continue with chemo treatments for as long as they are effective.

I’m sharing my news with you for a number of reasons:

  1. Because I’ve been open about my health situation from the beginning, I’ve had a number of readers contact me for an update. So, I felt it appropriate to share my latest news with all of my readers.
  2. Others who also have PMP have contacted me after reading my posts, and as they begin their own fight against this rare disease. I’ve been willing to serve as a resource for these people, and I’m committed to continuing to be a resource because PMP is so rare and finding good information is challenging.
  3. Sharing my story gives me an opportunity to encourage you to be your own healthcare advocate. If you have a doctor who is only interested in treating symptoms rather than looking for and treating underlying causes, fire him or her. Work with doctors who will look for causes. It could save your life.
  4. I want to explain how my health situation affects my work life. Because I cannot predict what condition I’ll be in on a specific date months ahead, I am not accepting conference speaking invitations for 2016. While I’m disappointed to be off of the speaking circuit, the upside is that this will free me up to present more webinars, write more (including a new book), and serve more clients.

While cancer has re-entered my life, I’ve got too much to do to give in to it. So, I’m not. My journey is not an easy one. However, it is one that I am managing.

My work-life focus, throughout my ups and downs, will remain on helping charities raise more money through ethical donor-centered fundraising. I will do this through my work with clients, through teaching opportunities, through media interviews, and through my blog.

Here are some things you can consider doing for me, if the spirit moves you:

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