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What I Learned as an Unpaid Patient Advocate (For My Wife)

Stanley Peter Jaskiewicz


  • Stanley shares a personal journey of advocacy, emphasizing the challenges faced in supporting family members dealing with autism and melanoma.
  • A critical aspect involves navigating the complexities of medical care, including maintaining detailed records, seeking second opinions, and staying informed about treatment options.
  • The narrative highlights the importance of self-care for the advocate, acknowledging the psychological impact and stress associated with supporting a loved one's health challenges.
What I Learned as an Unpaid Patient Advocate (For My Wife)

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I have never been paid for my best advocacy work. This work was among my most challenging "cases." But, the rewards I have received from doing it have been invaluable as a life experience. I am not talking about deadbeat clients. We all have them, but I have learned that they are not worth my time or attention. Instead, I mean work I have chosen to do for family members.

I began in earnest after my son was diagnosed with autism at a young age. He is now an employed college graduate, after my wife and I invested untold hours in the advocating for him, and for his classmates, with our school district. More recently, however, I was unexpectedly thrust into a more challenging role—helping my wife navigate her 3C melanoma diagnosis. (For those fortunate enough not to have had to learn the “ABC’s” of cancer staging, see the description here. It explains why I was terrified, initially, despite her oncologist’s optimism.)

I vividly recall watching her enter our home one day after a difficult appointment, shortly after her diagnosis—and fearfully wondering how many times I would see her come home again. (Since her fate is not the point of this article, let me eliminate any suspense with the good news about her treatment. With the care of excellent doctors, and then “experimental” immunotherapy, she has been tumor free for over 5 years.)

At the time, however, I steeled myself for the worst, especially after speaking to a physician client I respected. He sadly warned me of the mortality rates for melanoma at my wife’s stage, with a bowed head, and nod of sympathy. Notwithstanding his skepticism about immunotherapy (compared to “tried and true” chemotherapy), we chose to ignore his warning. We relied instead on melanoma specialists at local research hospitals.

Nonetheless, it was a difficult time. The entire month of December was fully booked with appointments and tests, while everyone else was celebrating Christmas. I also had long considered “metastasis” to be the ugliest word in our language, after my mother’s death from an aggressive metastasized breast cancer many years ago.

Unfortunately, I was traveling on business when she received her surprising diagnosis just before Christmas 2015. I cannot imagine her emotions over the next several days until I returned home, especially since she has a close relative who survived a rare cancer. As a husband and father, I immediately supported her in every way I knew how, beginning with accompanying her to all of her medical appointments.

As a friend counseled me, “The most important thing is to make the most important thing, the most important thing.” In other words, helping my wife and family took immediate priority. As an attorney, however, I applied my years of training how to handle difficult situations—by first getting all the information about fighting the cancer as I could find.

Although I read many books on both the medical and human aspects of battling cancer—see the Appendix for a list—one immediately stood out:

“When a Loved One Falls Ill: How to Be an Effective Patient Advocate”, by Brian and Gerri Monahan.

At a very practical level, it gave us a road map for the fight—and detailed steps far more concrete than passively waiting for the next scan or appointment.

Written by a paralegal and her trial lawyer husband, this book taught me how to keep the records file I would need to help my wife and her doctors.

After reading this book, I began a detailed log of each appointment and test result, including copies, and brought them with us to each appointment.

I kept a calendar to track all of her appointments and test results. (There were many of both.) I asked many questions at each appointment, as I would do with any expert in a case. That approach let my wife focus on hearing the doctors’ replies, without having to try to remember everything so that she could think about it all later. I also could view her “case” dispassionately, since I was not dealing with the stress of being a cancer patient. (But only to a degree—as her husband of (then) over twenty years, I was terrified of losing her.)

Constant inquiry through online research and books from our local library armed me with information about her options. By “reading up” between her frequent appointments, I could prepare informed follow up questions. We also learned that modern medical data record systems aren’t always on speaking terms with legacy systems—or easy to use by doctors trained on that legacy software—or paper medical records.

In fact, at one later appointment her oncological dermatologist (a specialty I never knew existed) asked me what I had in my notes from a prior appointment, when she could not find it in her electronic health record.

We also agreed to get a second opinion and made appointments at two of the leading medical centers in Philadelphia. The physicians gave diametrically opposite advice—one wanted to treat her with immunotherapy to shrink her tumors and then remove them surgically. The second recommended immediate surgery, followed by immunotherapy treatment.

My wife agreed with my concerns about metastasis, and her surgery was scheduled on the first available date (approximately a month after diagnosis). Looking back to that time, I recognize (in 20/20 hindsight) that my hyper-involvement in the details of her treatment was as much for me as for her.

Advocating for her gave me something to do to allay my fears of losing her by leaving “no stone unturned.” This was one of those rewards bestowed on me for my advocacy work for my beloved wife.

Work presented different hurdles. I can’t overlook my own professional stress, which I sublimated through all of her treatment. I had never been out of the office for so many intense periods of absence.

I have written in the past about how we “explained” my presence at home and not at the office to our son by never using the “C word."

A deal for my best client, that had been in negotiations for years, came to a head the day of my wife’s outpatient surgery. Torn by the options of intense work on an acquisition or learning the details of how to empty a J-P drain several times per day, at home by myself, I chose the latter. I have never regretted that choice – even though the client retained another firm for the deal, because of its immediacy.

Although doctors and nurses receive well-deserved praise for their work on behalf of all of their patients, especially during the pandemic, they do care for many patients. When a loved one is ill, however, you have only one patient. You have only one duty: to meet your loved one’s needs, whether helping her travel to all of her appointments, or comply with the doctor’s orders, or simply helping her bathe at a sink with a washcloth.

But there is a corollary rule, borrowed from the airlines’ safety announcement: put on your own mask first. You won’t be able to help your loved one, if you don’t take care of yourself—not only physically, but also, more importantly, psychologically.

For me, that meant doing a lot of reading from the books in the Appendix. I monitored messages from my office, even if I did not have time to attend to them. I also had, paradoxically, one of the most enjoyable experiences of my life. My son’s Eagle Scout Court of Honor had been long scheduled for a date less than a week before her surgery.

Eagle Scout Court of Honor is said to be scouting’s greatest moment—a formal, carefully developed celebration recognizing scouts who have attained scouting’s highest honor, Eagle Scout. Preparing for that milestone, especially assembling the memory table of his (and our) “Trail to Eagle," took all of my time available after medical matters.

It was a magical day for all of us, especially my wife. No one had a dry eye, especially the few who knew the whole story. (I still occasionally listen to my son’s speech.) Although I did not recognize it at the time, working hard and, continuously, on something other than “the most important thing” was, for me at that time, also a "very important thing.”

What you do is not as important as the fact that you are doing something that is not medical. That way, you can return to your caregiving refreshed in body and in mind.


I read the following books after my wife’s diagnosis. I copied this list from my public library’s online record. Some were better than others. I also note that many excellent books on science and caregiving for cancer have been published since our experience.

Finally, I am not a doctor or therapist. Like a complex transaction in which you must consider your retained expert’s opinions in doing the best for your client, you should also rely on your own independent judgment —what is it telling you about what you are reading or being advised? After all, in today’s health-care world, patients need at all times an informed, caring advocate.