For more than 25 years I have had the pleasure of calling Jerod Loeb my friend. We lived down the block from one another as our families “grew up” together. Many who read this blog also know Jerod, or have worked with him at some point during his illustrious career. He has been a leading international expert in healthcare quality and safety for decades, and he has taught me much through his leadership. His wife Sherri is also a good friend of ours. She too has spent her entire professional career in healthcare as a registered nurse. I wanted to share part of a recent article about the Loeb family’s personal journey through the healthcare system. Many of Jerod’s academic writings can be found in leading healthcare journals, however this piece, was published in their community newspaper.
Ironically, they will now tell you it wasn’t until Jerod was diagnosed with cancer that they both realized how much they did NOT know about healthcare. The Loeb’s personal experience has made them realize that drastic changes need to be made in healthcare administration. To that end, Jerod and Sherri are making it their personal challenge to educate others on how to best navigate the healthcare system as patients. Below Sherri describes some of her thoughts in relation to this dreadful disease:
“How do you ever start to explain the changes in your family’s life when someone is diagnosed with stage IV metastatic cancer? What was a perfectly normal life, changed on a single blood draw two years ago. From a PSA of 1.2 to 535 in one year. The prostate cancer had already spread out of the prostate and throughout the bones. It was too late for surgery. Two highly educated health care individuals were suddenly thrust into the sharp edge of the medical system. Through standard treatment, clinical trials, having to travel 1000 miles for care that looked beyond the “standard of care”, we have done it all. Throughout this journey we have learned many things:
1. Diseases don’t read textbooks – thus what may be appropriate care for some is not for others.
2. Although you may be extremely bright and knowledgeable once you enter the health care system as a patient you tend to become deaf, dumb and blind.
3. The need for patient advocacy and family engagement is crucial for the best care possible
4. Communication is vital. Without it everything else is lost.
5. Epidemiologists who decide that PSA screening is not important need to look at patients individually and not make a generalized statement.
6. Shared decision-making is the only way to appropriately approach care.
7. Stop treating patients like they are simply an icon on the computer and remember they are a person, with hopes, dreams and families.
8. Patient safety is not something to take haphazardly. Without it patients die or are harmed unnecessarily.
Many times, the most important educational messages we need to share in our teachings are not found in the traditional p-valued, statistically significant healthcare research articles we like to reference. The best learnings can be found in a neighborhood journal that incorporates the patient’s perspectives and needs into the educational moment.
Following is an email my brother sent last week. I wanted to share it with our ETY readers because it’s a gentle reminder that the real bravery in healthcare often occurs far from the hospitals in which we work. Patients are the real heroes in healthcare–their courage to face illness, the love and support they give one another in times of weakness, the new-found strength of a young father to cry when afraid–these are the lessons not taught in medical school. These are life lessons that not all of us will have to face, but if we do, I only hope we rise to the occasion with the same grace and resolve as Ev and Eric. You are both an inspiration–as is my brother who lives each day with the knowledge that the “important things” in life are family, love and fun.
From: Steve Granzyk
Date: November 15, 2012, 11:52:03 AM MST
As we move towards Thanksgiving (and what it means to us), check out the following post from Tracie Wilcox, who puts things into perspective (Eric gets his 2nd chemo infusion the day before Tday)…I’ve spent some time with him recently and he looks good, but he’s visibly fighting through some nausea and a constant fever. He’s incredibly strong and his head is right, so I’m not surprised that he continues to be there for his family and amazingly, he is still working. The group of guys that I grew up with have been coming through for him “big time” (he works for Joe Wall And Johnnie Maz, other friends of ours) and Mike is also in regular contact with Eric and Tracie also.
Eric’s life has been tough (lost his sister when she was in her late twenties), but his positive push forward at this time is a reminder that we should be counting our blessings and not focusing on what we don’t have or how rough times can be.
Equally, we have to thank Ev and Will for maintaining the strength to fight through Ev’s chemo. Ev took cancer head on, and is beating it like a drum. Not surprisingly, she never complained about symptoms that come with Chemo (fatigue, nausea, insomnia), she just flat out dealt with it. I knew she was heading in the right direction when I heard she was having Mia shave her head, rather than let the treatments take it from her. She took things into her own hands, sturdy as they are. Once again, blessed.
I know it’s a bit early, but we want to wish a Happy Thanksgiving to all. Positive thoughts and thanks to all of you from our crew.
Love and prayers, Steve, Megan, Vince and Payton.
November 13 (?) 2012 Posted 12 hours ago
Hope everyone is doing well! A lot of people have been emailing and texting asking how Eric is so I wanted to let everyone know that he is tolerating the first Yervoy infusion and has his 2nd one the day before Thanksgiving. From what I understand, the medicine has a delayed response so hopefully he doesn’t experience any of the ugly side effects. He is still taking the Zelboraf and will continue until he’s finished with the bottle he has left.
Eric had an appointment to check a couple areas on his back that I was concerned about and the doctor agreed with me on 2 of them and did a shave excision right in the office and sent the tissue out for biopsy. We should get the results next week.
We hope everyone has a great Thanksgiving as I know that this day truly brings on a whole new meaning for me. I give thanks for my husband still by my side and for his strength to be able to fight this awful disease. I give thanks for my children helping me make it through each day even if they exhaust me 🙂
I give thanks to my family for being by our side and taking care of us and our house. I give thanks to all of our family and friends for your encouraging words, dinners, advice and support during this terrifying time in our lives. To Eric’s “other” family at work, you all are amazing and thank you for allowing Eric to take off work if and when needed. I am truly grateful for all of you. Eric and I couldn’t do this without all of you!
Click on Eric’s Caring Bridge page for contact information if you have further insight into the treatments he is receiving.