Shopping for my first wheelchair brought forth deep emotions and a reminder to be thankful for what is.
What Treatment Plan is Right for Me?
One of the scariest realities of someone facing a cancer diagnosis is choosing the correct cancer treatment plan. Feelings of anxiety and stress are normal as you decide what path is right for you.
In this post I wrote for my friends at Hope Has Arrived, I outline seven steps you can take to find hope, peace, and even joy while discerning what treatment plan is right for you or your loved one.
Healing Through Wholeness: Embracing the Physical, Emotional, and Spiritual Dimensions of Wellness
I find myself in an unusual place. Sitting in front of a computer screen before dawn, my mind races with thoughts that will not let me rest. My spirit is wrestling with the idea of embracing the physical, emotional, and spiritual dimensions of wellness. Looking at life through those three lenses, physical, emotional, and spiritual, may help us find healing and wholeness.
The Fight is Real
In the past, I have spoken much about learning to live with cancer. The fight language adopted by much of our culture does not sit well with me. It could be I take it all too personally. Yet that is my reality. Let me explain.
A few months ago, it felt like my time here on this earth was ending. I lost eighty pounds in a very short period. When my oncologist spoke, I saw a nervousness and sense of urgency that I had not seen since my diagnosis in 2016.
Joseph and Rayann were both home for Christmas and New Year’s. I did little more than sit in my chair and sleep their visits away. To conserve my energy, we would plan one outing every few days. Even that was exhausting.
I found myself unable, unwilling, or even scared to commit or plan for events more than a few weeks into the future. Every day, I felt weaker. Projects got prioritized, and I found myself taking care of things so Nancy would be comfortable living in our home alone. In many ways, it felt as if cancer was finally winning. A part of me raged against being labeled a loser. I despise that language.
Something Shifted
We added another liver doctor to my team. He declared me “over-hydrated” and has me on water pills. Thanks to the pills, I lost another twenty pounds and am closer to getting my daily ten-thousand steps in. If you “lose me,” check the nearest bathroom.
My oncologist had me meet with the physician’s assistant this past week. This does NOT happen when he is imminently concerned about my well-being. When all my appointments start being scheduled with my oncologist, I know he is concerned.
Nancy and I have not felt comfortable scheduling vacations for a few years. Between caring for Mom and Dad, Nancy’s job, and my myriad doctor appointments, we have stayed close to home. Last week, we planned three trips between now and July. Looking to the near future seems like something we can do. At Christmas, I was unable to think past any given day. Something has shifted. [Read more…]
The Guardian
In August 2023 I sat (via ZOOM) for an interview with Philippa Kelly. Philippa is a freelance writer working with the Guardian Newspaper in England.
The article, ‘My life will be short. So on the days I can, I really live’: 30 dying people explain what really matters, is online now. You do not need to register to read it, simply click “I will do it later”.
Philippa does a great job of capturing a wide range of emotions felt by those dealing with a life-threatening illness.
It was an honor to be included in her work.
Fighting -vs- Living
Language is powerful. Words have meaning, and what we speak has the ability to alter how we experience the journey.
Fight language is familiar
My cancer journey began in May 2016. It has certainly been a roller coaster ride. There have been ups and downs, twists and turns, and even a few loops where it felt like I was completely upside down. One of the lessons I have learned is that how we speak matters. Language is powerful. Words have meaning, and what we speak has the ability to alter how we experience the journey.
People often speak of “fighting cancer.” There is something empowering about envisioning ourselves going to battle against the cancer cells seeking to destroy our bodies. When chemo day rolls around, the image of fighting can help us muster that last ounce of strength so we can make it to the appointment.
Family and friends often speak about me “fighting the good fight.” They marvel at how I continued to work five years post-diagnosis while undergoing treatment. Once out on disability, the comments spoke of how I continued the “fight” and found ways to build community and work for the common good.
What if we talked about Living?
I understand the fight language. It fits our culture and communicates one piece of a cancer patient’s journey. A part of me resists (even outright rejects) the idea of “fighting cancer” and prefers to talk about “living with cancer.” It may sound like semantics, simple word games, but for me, the change in language unleashes a new way of living. Let me share why the change from fighting to living is so significant. [Read more…]
Living with Cancer: An Update on My Health and Progress
We have lived as if cancer was background noise for the longest time. Treatment when necessary, making the most of chemo-free seasons, and choosing to live in the moment.
Over the past few months, something has shifted. The “background noise” has become more front and center and demands more focus and attention.
I am currently in my sixth round of systemic chemotherapy. The goal is to get ten to twelve cycles of chemo each round. At this point, I have had five. My liver numbers are not great, and we have pushed off chemo for the past three or four cycles. The fear is that undergoing chemo will land me back in the hospital.
The good news is that my cancer appears to be stable according to all the scans (and I have undergone plenty) and bloodwork. Stable means it is not growing. The less good news is that in times like this, pushing ahead with a few more cycles of chemotherapy often leads to reducing the size of my tumors.
My Liver
The real issue remains the stents in my liver. While we can swap out the stents as in the past, we are not seeing my liver numbers drop to the normal range. They come down from being severely elevated but have not returned to the normal range for the past few months.
High liver numbers mean my liver is not functioning correctly. I am not processing and/or draining the waste correctly. That manifests itself in me feeling exhausted most days. On particularly bad days, I suffer from brain fog. Brain fog makes it hard for me to think, plan, write, and read effectively.
My GI doctor is fantastic. The last time I was in the hospital, he was in Japan. The hospital doctors contacted him, and he responded almost immediately and helped them craft a plan to address my needs. It is not unusual for my GI doctor to call me at home to check in and see how I am doing. We adjust plans based on our conversations. Slowly it feels like we are making progress in getting this under control.
My Reality
Physically, the feeling as if something has shifted has been scary. I asked one of my doctors if my body was shutting down. They assured me it was not. Cancer-wise, I was fine, and we had options regarding my liver. It was good to hear those words, but it still feels like something has shifted.
Emotionally I feel as if I am on a roller coaster. Day by day, moment by moment, there are twists and turns. When I struggle to walk upstairs or fall asleep for the third time sitting in my chair, it is hard to accept that this is the way life is. Awake at eight am, ready for a nap by eleven am, does not seem right.
Spiritually I find myself thinking of St. John of the Cross and Mother Theresa a lot—spiritual giants who spoke of seasons where it felt as if the Spirit of God was distant. My physical and emotional realities have made it hard for me to be still and experience the Spirit at work in my life. I feel compelled to use what little energy I have to complete different projects (age-old problem of Dan-doing -vs.- Dan-being). [Read more…]
A Clean Stent
A big piece of life in the past few years has been cleaning out the stent in my bile duct. It is amazing how much an ERCP changes life.
Signs of Problems
I have learned to discern when my stent is getting clogged. I become tired. Not your normal; I did too much and need a nap tired. The I just got up, ate breakfast, and am ready to go back to bed kind of tired. It is a tired that you just cannot shake all day no matter how many naps you take.
My brain becomes fogged. It takes longer to think through problems, and writing or reading is just about impossible.
My GI tract starts giving me signs as well. Enough to say that it shows up at both ends.
When things get really bad, my skin yellows, and the whites of my eyes turn yellow.
All of this is a sign that the stent in my liver is blocked and that an infection is taking hold. I have a standby prescription of anti-biotics that usually take the edge off of the worst side feelings. While I start taking those, I am on the portal with Dr. Leung working to get my next ERCP scheduled quickly. We have developed a great relationship, and it has helped keep me out of the ER for the past few times the stent has been clogged.
ERCP
The fix is simple. Well, maybe not simple, but it certainly has worked in my case. I just completed my thirteenth ERCP. It is normally a thirty-minute procedure where they put a scope down your throat and run a wire to the stent and clean it out.
The picture is part of how they accomplish the procedure. You can see the metal stent placed in my liver. The scope is directed down to the base of my stent. Then, Dr. Leung uses a wire to go up and clean out the stent.
Kind of amazing when you look at it.
Once the stent is cleaned out, all the bile from my liver flows freely, and I immediately feel like a new person.
On the way into the procedure I am dragging. Walking out I am just about skipping down the halls.
BTW – the other piece of hardware you see in the upper left of the picture is my port. It is where I receive chemo treatments. A fantastic device. I would love to meet the person who invented it.
Right now I need to have the stent cleaned out every two months.
I will feel great for about a month and a half, and then will slowly decline until it is time to go in and get “serviced” again.
Check out the latest episode of the A Place in the Conversation Podcast:
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