Where Have You Been?
The blog has been quiet for a few months now. Looking back, that seems to happen every now and then. It has less to do with how I am feeling and more to do with the other projects I am involved in.
After retiring in August of 2021, I committed to saying “no” to every request for my time for six to twelve months. It was a time to be still and discern the Spirit’s invitation for this next season.
Slowly I began to see a pattern, a path forward became clear.
All my work is voluntary. I work when I want and spend many afternoons taking naps. When I have strength, my plan is to invest it. When weak, I take time to heal. I am enjoying this relaxed form of moving through the world. Here is some of what I have been up to.
A Place in the Conversation: Nancy and I have had a nonprofit for the past ten years. Retirement has allowed me time to invest some energy in building it up.
A Community at Worship: Chris Wells and I just completed this book project that has been four years in the making. When I am working on a book project, the blog suffers. It appears I can only focus on writing in one area at a time. A Community at Worship is designed to help individuals, and congregations think through the “why” and “how” of worship.
Community Partnerships: I have spent a lot of time eating lunch and drinking coffee. Partnerships require relationships, and I have worked to help grow both within our community.
Caring Conversations: This book project is exciting and challenging at the same time. Nancy and I are working with a number of friends to put together a resource for individuals and families who are experiencing one of life’s “disruptions.” I am hoping it is complete and available by mid-April.
Life is busy. It is nice to work as a volunteer. I can move at my own pace. Some days I accomplish a lot, while others are focused primarily on gaining strength and being healthy.
Mom and Dad
Mom passed away on December 13th. Dad went into hospice care on December 24th. I miss my visits with mom, and it is hard to watch dementia slowly (or not so slowly) stealing dad from us. Dad has okay days and bad days. He does not remember the 50 years in New Baltimore, NY, and forgets our visits as soon as we step out the door.
It is fun to watch him “come alive” as he remembers something from the past and connects with this world, if only for a moment. A few visits ago he was all excited talking about a lamp that he and Daniel built. I struggled to understand what he was talking about, just nodding and smiling as he shared his story. It wasn’t until I was partway home that it hit me. When I was in high school we found a piece of drift wood on the beach in Maine. Dad and I worked together to turn it into a lamp. I still have today. It sits on my dresser, I use it every day. From what deep recesses of dad’s mind he pulled that memory I do not know, but for a few moments it brought him joy. Moments like that make me smile.
How Are You Physically?
My fifth round of systemic chemotherapy came to an end in November of 2022.
I was looking forward to a long break, but that is not to be.
In January, I spent a few days in the hospital due to an infection. Every time I am in the hospital, they do scans. With my history, it is a pretty sure bet they will “find something” when they start looking around.
The ER doctors were in a panic. Disease progression to my lungs. The tumor on my liver had increased in size. Over the past seven years, I have learned to listen to the ER doctors but rely upon my oncologist’s opinion. ER docs are great, my case is unusual. What they see scares them. I need the steady voice of Dr. Saroha to help put everything in perspective.
Yes, there is disease progression to my lungs. It is so small that you have to really look to find it. While not good, we caught it early. The “growth” in my liver is real, but it is minimal, again we caught it early. Measuring tumor size is always a bit of a struggle. Imagine we gave five people an opportunity to measure the length and width of a potato. No two measurements would be the same. Tumors have a very irregular shape (much like a potato), and when measured by different technicians, it is common to get different sizes.
The Plan
I will start my sixth round of systemic chemotherapy on February 21st.
- The good news: we are using drugs I am familiar with. I used these early on in my treatment. They provoked a good response and significantly decreased my cancer. I am hopeful for a similar outcome this time.
- The not-so-good news: we are using drugs I am familiar with. My cancer has experienced them before and may be resistant. I know what side effects to expect. Neuropathy will most likely be my reality. I will have to avoid cold drinks of any kind.
Overall I am encouraged to be returning to these drugs. I am hoping to avoid some of the side effects that were so present last round.
How Long?
Dr. Saroha began this discussion by saying to focus on six cycles. He did not want me to get overwhelmed by thinking about another ten to twelve cycles (five or six months) of chemotherapy. The truth is he will help me get to six cycles and then say, “Dan, how about we try for another six?” It is better for me to plan for the full round and be gifted an early break.
Moving Forward
The longer this journey continues, the more I am convinced that most of the struggle is emotional and spiritual. Navigating this season well has more to do with my spirit than any physical reality.
The truth is that one day something will cause my physical body to stop working. The most likely cause will be cancer or some side effect from my treatment. Very little is going to change that reality.
Investing the precious time I have left with grace, joy, hope, and a smile has more to do with my emotional health and how I see the Spirit working in my world. When I am thinking clearly, and walking closely with the Spirit of God, there is no disease or side effect from treatment that can disrupt life, or cause me anxiety.
As the cycles add up and this round of chemo progresses, I fully expect to enter into “the chemotherapy brain fog.” As the fog settles in, my mind slows down. It takes longer to do just about everything. Reading and writing become the biggest challenges.
If the blog remains “silent,” know I am working (slowly) on other projects.
May your spirit be open to hearing the “still, small voice” of the Spirit speaking gently, yet boldly into your life.
Always great to hear your voice- even if it on the printed page. Keeping you and Nancy close in prayer as always. Quoting a wise man I know: God is good all the time. All the time God is good.
Thinking of you and praying for all of you. Our accident in December added a head injury to John’s issues and has jumped his dementia exponentially. I get what you mean- it is a roller coaster of emotions. Hang in there! The memory of making that lamp was pretty powerful for him. He values you and time spent with you so much! Hold onto those moments- they will be comforting later if not now.
Thank you, Dan for the update! It was complete, realistic and filled with Spirit and Faith!
My favorite line: “May your spirit be open to hearing the “still, small voice” of the Spirit speaking gently, yet boldly into your life.” You are the model that teaches us this! Again, thank you! Joan
Thank you for sharing your Chemo structure. It sounds so similar to what my husband has been through every 2 weeks, then wear a pump for additional fluorouracil that makes it horrible to touch anything cold, this is for 46 hours. Then back to the infusion car to disconnect the pump. Bless you, have a good week.