Posts tagged ‘PMP’

November 30, 2017

Do the Numbers Tell the Full Story?

I’m back! I haven’t written a new blog post in nearly eight months due to serious health issues. Now, as my recovery progresses, I feel compelled to return to my blog as I have much to share with you. Thank you for your support and patience.

I want to take this opportunity to update you about what the past several months have been like for me while making a useful fundraising point that I believe will be of benefit to you.

Like you, as the end of the year approaches, I’ve been inundated with direct mail, e-mail, and telephone fundraising appeals. Many of these appeals focus on numbers. For example, I’ve read about how one organization won several awards for its theater productions, how another has a $10,000 challenge grant, how another needs to raise an additional $50,000 to meet its goal, and how yet another has helped feed over 500 people during Thanksgiving.

On the other hand, I also received an appeal from the Philadelphia Children’s Alliance, which brings justice and healing to the survivors of child sexual abuse. The appeal, which stood out from the pack, told the story of one child, 5-year-old Sarah. Reading about Sarah’s situation, I learned how PCA helped her. In addition to Sarah’s compelling story, the appeal mentioned that PCA also provided services to over 3,500 other children in need over the past year.

Which charity do you think I’m most likely to support? If you guessed PCA, you’re right.

While numbers can tell part of the story, they can’t convey the whole story the way that sharing the experience of one individual can. Sharing someone’s personal story can make a cause relatable, more real, and more compelling. Stories tap into emotions that statistics simply cannot.

Now, let me try to do a bit of both. I want to update you about my personal situation while using some numbers.

Regular readers of my blog know that I have suffered from the exceedingly rare Appendicial Carcinoma with Pseudomyxoma Peritonei (PMP). I’ve been open about my situation for three years so that readers would understand when I stepped away temporarily and so that others suffering with PMP would know that I am willing to be a resource for them. If you want to learn more about my journey, just search “Pseudomyxoma Peritonei” on this site.

I was diagnosed with late-stage PMP in 2014. My doctors suspect it had been growing in me undetected for nearly a decade. Two months after diagnosis, I underwent successful major surgery. Unfortunately, the cancer came back in 2015. While chemotherapy kept it in check for several months, surgery was again required in April 2017.

This time around, my primary surgery in April was 14 hours long. My follow-up surgery in June was two hours.

I was in the hospital for a combined total of 40 days from April to June. That includes my initial hospital stay, two readmissions for complications, and one follow-up surgery stay.

During my three-month treatment period from April through June, I read 10 books. Hey, I couldn’t always rely on television for good entertainment. I would have read even more books if it wasn’t for the painkillers.

Lisa, my wife, and I spent nearly one-quarter of the year in Pittsburgh, home to the University of Pittsburgh Medical Center’s Shadyside Hospital where I received expert treatment.

I went into the hospital weighing an already diminished 146 pounds. I exited at about 112 pounds. I’m now over 130 pounds and gaining toward my goal of 150 or more. (If anyone wants to help fatten me up, I’m available for lunches. 🙂 )

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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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September 5, 2014

Cheating Death

Recently, Death came knocking on my door. I did not answer; it seemed like the smart thing to do. It worked.

Now, I have completed treatment for my abdominal cancer (Pseudomyxoma Peritonei, often referred to as PMP). I’m in remission, and my oncologic surgeon expects me to live a reasonably healthy, full life.Death by thom via Flickr

Despite the miraculous treatment outcome, I’m still a long way from normal. My recovery continues as I focus on healing, regaining strength, and putting on weight. While I concentrate on a return to good health, I will gradually re-engage in professional life between now and the end of the year.

I wish my progress were much quicker. However, as I look back over my shoulder, I realize that I’ve been on an extraordinary journey over the past seven months. Here’s a brief recap of what has happened:

February 2014 — Leading up to my routine physical, I knew it would be more than routine. My abdomen had become inexplicably distended despite having shed some extra weight. In addition, I had a persistent cough for more than a month.

At my February physical, my doctor poked around and, with a concerned look on his face, told me he wanted me to have an abdominal CT Scan. While inconclusive, the CT Scan showed growths and fluid build-up. More tests and visits to specialists immediately followed as part of the diagnostic process.

March 2014 — By the end of March, my lead cancer specialist gave me my diagnosis and prognosis. He informed me that I had PMP, a rare cancer with fewer than 1,000 diagnosed cases worldwide each year. The doctor believed that I likely had the slow-growing appendiceal form of PMP, and that I probably had it for about ten years. Without treatment, my life expectancy would be about two years. Unfortunately, given the severity of my case, treatment would likely only give me a five-year life expectancy.

Treatment for my form of PMP involves surgery and HIPEC, a heated chemo infusion at the time of surgery. The Philadelphia PMP expert held out little hope that treatment would be able to remove all of the disease. However, he did recommend that we get a second opinion from Dr. David Bartlett at the University of Pittsburgh Medical Center. Dr. Bartlett and his team are among the world’s most experienced at treating and researching PMP. So, based on our own investigation and the recommendations of multiple doctors, we made an appointment with Dr. Bartlett.

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June 10, 2014

Progress Report

“Look! It’s moving. It’s alive. It’s alive. It’s alive, it’s moving, it’s alive, it’s alive, it’s alive, it’s alive, IT’S ALIVE!”

— Henry Frankenstein from Frankenstein (1931)

 

It’s been over two months since I first reported to you that I was diagnosed with an extremely rare form of slowly progressing abdominal cancer: Pseudomyxoma Peritonei (PMP). So, I thought it was about time I provided you with a progress report.

The bottom-line is that I’m very much alive and doing better each week.

Here’s what’s been going on:

My wife and I traveled to Pittsburgh, PA so that I could undergo surgery on May 2, 2014 with Dr. David Bartlett at the University of Pittsburgh Medical Center. Dr. Bartlett is one of the world’s leading PMP surgeons and researchers. His surgical team and the nursing staff are experienced and fantastic.

Frankenstein (1931)

Frankenstein (1931)

My surgery was massive. I was on the table for nearly 14 hours. Approximately 30 pounds of mucin and several organs were removed. In addition, cancer growths were scraped off of other organs. Finally, I was treated with HIPEC, a heated chemo infusion. After approximately three weeks in the hospital, I was released and headed back to Philadelphia a few days later.

The fantastic news is that the expert surgical team reports they were able to extract the cancer and that they consider the surgery a “complete” success. In a few weeks, I’ll return to Pittsburgh for an anticipated follow-up surgery that will keep me in the hospital for about four days. After that, I’ll be completely done with treatment.

While my treatment will conclude shortly, I will continue to undergo frequent diagnostic testing. While successful as a treatment, the surgery is not a cure. Although I am now classified as being in “remission,” the cancer is expected to return someday. Fortunately, Dr. Bartlett believes this will not happen for many years. When it does, we’ll catch it early so that it can be beaten back with a far less aggressive treatment and, perhaps, with a breakthrough therapy.

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April 4, 2014

Delivering (My Own) Bad News

I don’t want to mislead you. So, let me be clear from the start. This post is less about how to deliver bad news and more about, well, me sharing some bad news with you. Nevertheless, in keeping with the spirit of this blog site, I will include some relevant tips at the end.

First, I want to share some terrible, personal news with you.

As you may know from some of my previous posts, the past couple of years have been a challenging time given my wife’s fight with Ovarian Cancer. Now that she continues to be in remission, we were looking forward to a happy, relatively normal 2014. Unfortunately, that’s not to be the case.

I have been diagnosed with Pseudomyxoma Peritonei (PMP), a slowly progressing abdominal cancer. PMP is rare. Medical professionals diagnose fewer than 1000 cases per year worldwide, according to some researchers.

Frowny Face by khaybe via FlickrAt this point, I have no pain and very little discomfort. My only significant symptoms are a distended abdomen, an annoying cough from the pressure on my diaphragm, and weight loss beyond what I was shooting for. However, left unchecked, my condition would soon change for the worse. Therefore, in the coming weeks, I will undergo surgical treatment. This will require a lengthy hospital stay and recovery period.

Unfortunately, there is no cure or even remission for PMP. Treatment will beat it back. Then, I have to hope it comes back very slowly.

Now, and for at least the next few months, I need to focus 100 percent of my energy on regaining as much of my health as possible. 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, here are some things that you might consider doing, in no particular order:

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