One of the lessons I have learned over the past six years is the importance of having a good healthcare advocate.

Lost Without My Advocates

Having a good advocate is always important. Someone with a strong voice who cares for you and is willing to speak on your behalf. Those of you who know me well understand I am no wilting daisy. I have the ability to express my concerns and advocate for what I believe is right in any given situation. While that is true, I would have been lost without Nancy serving as my advocate for the past six years.

Stressful situations, like any healthcare emergency, can mean we are not functioning at our best. While we may be present for entire conversations, there is a good chance we will miss important information. There have been times when I was too weak, physically, emotionally, and spiritually to question or protest decisions that did not feel right. I needed my advocate to speak on my behalf in moments like that.

A Familiar Story

I will share what may seem like a dramatic story to illustrate the importance of advocating for yourself and others. But, the truth is that stories like mine play out across doctors’ offices and hospitals every day. I am reminded of the importance of advocacy each time I have an ERCP.

This past week I underwent an ERCP to clean out my bile ducts. This procedure is necessary because one of my prior cancer treatments severely damaged my liver. As a result, I now have three metal stents in my bile ducts, allowing the bile (waste) to drain from my liver. Once these ducts get backed up, I start heading towards liver failure. The ERCP cleans out the ducts and allows my liver to function closer to normal. Imagine a partially clogged sink drain that starts to work efficiently once cleaned out.

The day after my latest ERCP, the GI office called to schedule my next ERCP. They have become routine. Every three months, I go in for a cleanout.

The History Behind My New Routine

What is essential to understand is that this was not always the case. When my liver first started having these issues, I was told there was nothing that could be done to correct the problem. One doctor stood in my hospital room, apologized for not having any answers, and told me I would be discharged. My liver would continue to shut down, and I would die.

As you can imagine, Nancy and I began advocating very strongly that this did not sound like a wise option. It took a few days for the GI team to come up with the plan to try an ERCP. My first ERCP did not work. After more advocacy and many conversations, they agreed to try again. The second one worked, and my bile ducts started to flow closer to normal.

Over the coming months, I needed to have the procedure repeated. With each ERCP, the ER and hospital doctors would tell me that it was impossible to have multiple ERCPs. One doctor told me, “We will do this ERCP, but it is the last one you will ever have.”

“Familiar With My Insides”

After many more questions, conversations, and advocating for a different solution, I finally connected with the right GI doctors. They understand my issue and have a long-term view on managing my cholangitis. Dr. Galen Leung is the GI doctor who has been performing my ERCPs. After this latest procedure, he casually said, “we will do this again in three months, and we can do it earlier if you need it.” This is just another part of what my “new normal” will look like in his eyes. As we parted ways on Thursday, he smiled and said, “I am very familiar with your insides.” I found that strangely comforting.

I share this story to help you understand the importance of advocating for yourself and those you love. If we had listened to the first few doctors, I would not be receiving these ERCPs and would most likely have died from liver failure. I needed people to speak for me when I was too weak to fight on my behalf. My advocates (Nancy and a couple of compassionate doctors) spoke mightily into a complicated situation. Without these advocates, I would not be receiving the treatment I am today.

Advocacy Questions:

• Who are the people who have advocated on your behalf? Have you thanked them for their support?

• Who is the person (people) who can serve as your advocate in difficult situations?

• Is there someone in your life who needs an advocate? Can you speak on their behalf? If not, can you help them find an advocate?

• When someone comes alongside to advocate for you, how does it make you feel? Do you welcome their help or struggle with wanting to do everything yourself?

• When interacting with doctors, can you balance respecting their expertise and advocating for optimal outcomes? This is not always easy, especially when we are the patient, which is why it is crucial to have trusted advocates alongside us.

Nancy and I have been married 32 years today. We are celebrating in a most unusual way. It helped me focus on living with gratitude.

Life-Altering Decisions

Looking back over your life, there are bound to be a few significant events that stand out. Decisions made which end up impacting the arch of your future. One of the most significant in my life took place on June 2, 1990. Nancy and I were fresh out of college. Graduation had been a few weeks prior. Standing with friends and family, we made a commitment to each other; we would walk life together no matter what came our way.

For thirty-two years, we have made it work. It has not always been easy. Nancy will tell you I am impulsive, constantly looking to improve things, and a bit compulsive when it comes to things being in the correct place. It is no secret that I have had the easier go of it when navigating our relationship. We have made it work. Made it work even while I (we) have been fighting cancer these last six years.

These days Nancy moves within our relationship with a boldness and confidence that is refreshing and somewhat scary. Just the other day, she looked at me, smiled, and then said, “what, are you going to leave me now? I am the one with health insurance.” It is okay; you can laugh.

The truth is that we have grown closer together over the past six years. Walking this journey has caused us to have conversations we would typically avoid. I can honestly say I love Nancy more today than the day we stood before friends and family to become husband and wife.

Our anniversary celebration

This afternoon, I will have an ERCP to clean out the bile ducts in my liver. I cannot eat anything before the procedure, so a nice breakfast celebration is out of the question. Following these procedures, I usually want nothing more than to sit quietly and let my body recover. So I am anticipating a very low-key celebration. [Read more…]

My blog has fallen quiet as I caught up on other writing. Avila and I created our peace bench, a quiet place to be still and pray for peace.

My Side Projects

For the past two months, my posts have been sporadic at best. When the blog goes quiet, I usually fulfill my need to write in other places. The first few months of retirement found me trying to “catch up” on several side projects.

I am nearing completion of the second edition of The Journey Continues. We are in the final editing stages. I am hopeful that it will be available shortly. When I first published The Journey Continues, I resisted the urge to do a lot of editing. I wanted the reader to capture all the emotions of each chapter. This time around, I have tightened things up, added a few years’ worth of content, and ended up with a shorter book. I have been reminded of the many blessings of the past few years.

My friend Chris Wells and I are nearing the completion of a book dealing with worship. We hope to have it available by the end of the year.

Finally, Nancy and I are working on a project dealing with the many awkward conversations cancer has led us to have over the past six years. We have invited some friends to help us tell the story, and we are excited about what this book could be. Again, we hope to have this available by the end of the year.

While the blog has mainly sat silent, there has been plenty of writing taking place. [Read more…]