Monday, February 22, 2010

Not facing the odds

My friend Sam Mygatt died last Tuesday. I am posting, with her permission, remarks that Sam's daughter Jen offered at his memorial service. Sam and Jen provide us with important lessons. The first is about the value, or lack of value, associated with statistics. The second one shows how a family can interact with a receptive medical team to make a real difference in the treatment of a patient.

Dad told me on Monday that he figured there was a “Better than 50% chance,” that he would die either that day or the next. 50%: it strikes me that these have been some of the best odds Dad has had in the past years.

He and I made a deal on Monday afternoon, that at his memorial service, I would tell you all about the role I played in his cancer treatments over the past several years. He thought it might be useful to some of you in the future. So here goes.

First, statistics. They work on a population level; they don’t mean much when you’re talking about one person. I remember reading, in 2006, that 92% of patients who have synovial sarcoma will also have metastatic synovial sarcoma at some point. Pretty nasty. But look, you either have metastatic disease or you don’t: you never have almost-metastatic-but-not-quite disease. Dad knew there were unpleasant statistics, probabilities, and time frames to be found should he look, but he intentionally did not. In not knowing them, he wasn’t bound by them, he wasn’t limited by them, and he refused to be governed by them. “Come and get me,” was how he approached it, and on he went.

In 2006, we moved into the realm of clinical trials: high risks, possible yield, but no real expectations. The 20-page consent forms stated, among other things, that Treatment X was not expected to help us; hopefully it could help others in the future. Before Dad embarked on each clinical trial, I read up on the drug, to get a sense of what might be in store for us. We fell into an agreement that I’d sift out unpleasant statistics and unnecessary information, tell him what I thought might be most useful to him, and make sure to offer whatever strands of hope that I found. Certainly, some people want to know all that they can about the disease they have, but not Dad. In the way he and I split the work, he was able to focus all of his energy on healing and strength and priorities, and I was able to anticipate pitfalls and dig around for back-up possibilities should the current treatment fail him.

Over the next several years, I read up on synovial sarcoma, following any lead back to reliable sources, before bringing select findings to Dad. An online sarcoma forum provided some of my best ideas, and a research database called PubMed was an amazing resource to ground these ideas in science and credible possibility. Dad has had a remarkable oncology team in Boston, and everything I did was ancillary to that. Dad’s oncologists and nurse practitioner both welcomed and came to expect Dad’s enthusiastic participation in his own care, and so I was able to participate.

Because clinical trials are on such shaky ground, it seemed remotely possible I could find something to actually help him, that he wouldn’t already get from his oncology team. Amazingly, I did. Two examples for you.

In December, 2006, one of Dad’s meds quite suddenly rendered him unable to walk or use his hands for a week. We didn’t know that the cause was peripheral neuropathy, a semi-preventable side effect. But you can’t prevent it unless you anticipate it; we hadn’t, because it was not emphasized in earlier visits. On Christmas morning, after his doctor had told him to stop the drug until next week's appointment, I easily found information about the drug’s side effects and how to manage them. I watched the fear in Dad's eyes dissipate as he read the three printed pages, describing exactly what he was experiencing, and he made quick changes to his daily routine to calm the problem. It was a tiny thing that anyone in this church could have found with a quick Google search, but the impact was profound. This was the beginning of my role as a trusted member of his treatment team.

On to our biggest triumph. This was really pretty amazing… One of the drugs I researched actually turned out to be the most successful treatment regimen he had during his fight with metastatic cancer. He flat out would not have started to take the drug without the background research I compiled, which he then proposed as one option of several to his oncology team. The oncologist didn’t think it would amount to much, but we gave it a try anyway, in combination with another drug. Over two months, Dad’s tumor burden shrank by 50%, and we stayed with the drug for a year before discontinuing it. He credits this year of his life to the research I did, mind you, as a 25-year-old with no formal medical education.

I tell you this second story for several reasons. One, he got an extra year of life out of it, maybe more. I helped give that hope and time to Dad, and I can think of nothing more valuable in this survival quest. Two, he asked me to share it with you, and I have always had a habit of doing pretty much anything he requested. And perhaps most importantly, he thought you might be able to borrow the idea should you be faced with a similar situation.

This story is about more than figuring out and fighting this disease. It’s about a guy who believed so much in his daughters, and expected so much from them, that he trusted one of them to play a very special role in the last years of his life. He taught all three of us to learn independently and to back up our ideas enough to present them respectfully to the experts. There’s a lesson here in advocacy, in deciding what is most important and pouring our energy into it, and in believing that we can indeed make a difference.

Dad lived 11 amazing years after being diagnosed with cancer, and plowed through 12 rugged drugs in 10 combinations. I can name them all if you ask; they sound like poetry. For years, I have laughed with family and friends in amazement at his resiliency, courage, and grace. Dad had every intention of living as long as his glass was half full, and his story is a triumphant one. For sure, he faced poor odds, but in never acknowledging them, perhaps he never actually faced them after all?

20 comments:

Anonymous said...

Moving story; nasty and rare disease. It also illustrates that not all patients want to know all the gory details; coping with a fatal disease is hard enough. Their wishes should be respected.

nonlocal

e-Patient Dave said...

What a beautiful story. And what a wonderful example of how

Last night Jen and I corresponded. Like me, during the disease process she'd never heard the word "e-patient," but she's a pure and perfect example: engaged, empowered, equipped and enabled. And, educated, making a world of difference.

I also learned that the sarcoma forum she cited ("provided some of my best ideas") is on ACOR.org, the same place my doctor sent me to find kidney cancer peers.

And on Christmas morning, when hospital staff was unavailable to deal with a debilitating side effect, she easily found helpful information on her own.

Look at this: a young adult with no medical training gets it in gear and adds years to her father's life and helps when nobody else can. That's e.

Thanks, Paul, for seeing the value in this inspiring story and sharing it. And thanks, Jen, for telling it so well.

e-Patient Dave said...

New Yorker should have a new feature, "Our forgetful commenters." That first paragraph was supposed to end "What a wonderful example of how patients and families can help."

Paul Levy said...

Dear nonlocal,

I want to make a subtle distinction. Sam was not unaware of all the details. He just understood that the statistics might not be helpful. There are always outliers, in both directions, and you don't know till the end whether you were one or not. In that sense, statistics are not very helpful to the patient.

Paul Levy said...

From Facebook:

Sharon: Thank you for sharing those remarks, which are very moving and also an extremely interesting way of helping a loved one deal with a tough medical diagnosis.

I'd highly recommend this for all those looking for a way to do "Internet medical research" intelligently, in a way that's helpful without actually freaking out a patient battling illness.

Jen said...

Just a quick clarification: my early "best ideas," the ones to which I referred in my remarks, actually came from The Sarcoma Alliance, which I don't believe is associated in any way with ACOR. My involvement with ACOR is more recent.

David said...

A beautiful posting.

Paul Levy said...

Transferred from Facebook:

Pam: Beautiful, Paul...thank you (and Sam and Jen) for allowing us to hear how participatory medicine truly benefits the provider, patient and family. What a wonderful legacy Sam leaves!

Amy: It is true that we all want to know the statistics and each have to remember we alone are not one. We need to remember that sometimes, it is a self educated family member or friend who is among the best on the health care team.

Sam was a lucky man to have Jen on his team....blessings to them both as they have been to each other and us.

Now is the time for rest, May they each rest well.

Anonymous said...

Paul;

Point taken. The point I was trying to make, badly, is that it is not always the patient who wants to be the "e-patient", although many do. A patient should not be judged if he/she decides he can't handle delving into all the gory details of his diagnosis and treatment, including statistics on his chances.. As in this case, it is very helpful to have a loved one who WILL serve that function.

As for statistics, this man had already defied all statistics by simply contracting synovial sarcoma, which is quite rare and even more so in older patients. But yes, it is true that statistics apply only to populations. Unfortunately, we may have to use them someday to decide who/how much to treat cancer, as increasingly expensive treatments are developed. Yet another conundrum in our health care system.

nonlocal

Paul Levy said...

Right, thanks.

Paul Levy said...

Transferred from Facebook:

Anne-Marie: Helps to remind us of our priorities. Great piece.

mcoletti said...

Thank you for sharing this story with us. I'd like to remind folks that when doing any kind of research into a diagnosis, medication, etc., a hospital librarian may be your best friend. He/she can direct you to reputable resources, locate reliable information and do an effective PubMed search.

Seth said...

Thanks for sharing this, particularly since I couldn't make the service. Sam was a great guy, who clearly had a wonderful family as well. We'll all miss him.

Susan Carr said...

First, I was moved by the power of this story and Jen's skill at telling it. It's one of the most compelling stories of patient & family engagement I've read. Then suddenly I realized this must be the same Sam & Jen Mygatt my family (esp. son Nat) and I knew in Lincoln 15 years ago and more. I send deep condolences to all of Sam's family. He was an extraordinary man, blessed with extraordinary daughters.

Paul Levy said...

Fram Facebook:

Mary Ellen: Thank you for sharing this heartwarming and encouraging story. I will keep Sam and his daughters in my thoughts and prayers.

Paul Levy said...

From Facebook:

Roberta: Thanks, Paul, I've been looking for the best ways to support a colleague with cancer and this is a great inspiration.

Mark Gebhardt, MD said...

Nice article. This is how I spend my days dealing with patients with sarcomas and issues such as she outlines. This patient’s family and others may be interested in an electronic newsletter for patients that was started by a father of a girl who died of Ewing sarcoma. It is written for patients and their families and contains a lot of reliable information about various sarcomas and the treatment protocols.

Here is the webpage: sarcomahelp.org/esun.html.

The Electronic Sarcoma Update Newsletter is an online peer-reviewed newsletter that contains articles of interest to patients, caregivers, physicians, and nurses. ESUN is published bi-monthly and has regular columns discussing:

• Specific sarcomas

• Current issues in sarcoma treatment

• Participatory medicine

• Recent research findings

• Answers to readers' questions

• Stories of courage and hope

ESUN has an outstanding Medical Editorial Board and is a vital source of information for thousands of readers worldwide.

Mike said...

Sam was always thoughtful, considerate, well-meaning, and imaginative whenever I interacted with him. The world will miss his presence.

Marilyn said...

This beautiful father-daughter story very much mirrors my experience dealing with my husband's inoperable stage 4 Pancreatic Cancer diagnosis 4 yrs. ago.

At the outset, he was given NO hope at all by his surgeon- that just about killed us! In fact, his surgeon recommended NO treatment as a viable option.

Thank Goodness, the oncology team pointed out exactly the same statistical population-based paradigm described in Jen's story. Mu husband wanted to be an outlier!

Although he was a physician-researcher, what he did not want to be was his own cancer researcher. In fact, he assiduosly avoided reading any grim studies easily found in a 1-minute google search. Instead, I played that role and collaborated with his oncology team to find the most cutting-edge treatments. Much of the best information I found was from other patients and care-takers on the Johns Hopkins Pancreatic Cancer Discussion Board.

I know I found him the possibility of an additional 3-6 months past the original prognosis. That time was precious to us and to our children!

Marilyn Morrissey,RN
widow of Dr. Jim Ryan

Carol said...

Instructive and inspiring, too -- thank you so much for sharing that, Paul.