Spiritual Formation Catalyst
Working to help people respond to the Spirit's call in the midst
of their everyday lives so that they may experience what Jesus describes as,
"life to the full."
I shared some “behind the scenes” truths about my journey with a fellow caregiver. Our conversation provided us both a caregiver lesson.
I shared “secrets” of how I REALLY deal with the stress of Dan’s long term illness with a caregiver friend. My friend saw my “game face” and didn’t realize the emotional ups and downs I go through as a caregiver; this formed a caregiver lesson we shared together.
I never want my caregiver journey to end! I learned this caregiver lesson walking alongside my father during the final days of his life.
This caregiver lesson was realized recently with my father’s death.
Dad had struggled with a long-term illness. While visiting my parents regularly to help was exhausting, I wish Dad were still here.
That brought the realization that I want to continue this caregiving journey with my husband forever.
These are my people. They speak my language, feel my pain and we share a common love and struggle.
I had plans for a very productive day but came across this gem that made me stop everything and share.
These people speak my language.
While living in Malden, MA there was a Dunkin Donuts (DD, Dunkin) every couple of miles. I had my favorites and they were regular stops throughout the day.
I worked in a warehouse during my time at Gordon Conwell Theological Seminary. Our team made frequent runs to the DD across the street. I shudder to think how much of my hourly wages were drank away in “large black coffee.”
When we moved to Cortland, NY it was a different story. The nearest DD was in the next town. That meant a twenty-minute drive to DD and a twenty-minute drive back. Culture shock.
My eight years in Springfield, MA was pure joy. When I left the church parking lot there was a DD within half a mile in any direction. Pure joy.
I can feel these people’s pain…they are my people.
Thinking about the people of Stow, MA during this difficult time. @wbznewsradio pic.twitter.com/GitjzgoxHQ
— Matt Shearer (@MattWBZ) September 12, 2022
We resumed systemic chemotherapy treatments on July 18th. Here is an update on how things are going. Thank you for your prayers.
One of the things that will trigger our decision to restart chemotherapy is a rise in my CEA. CEA is a blood test that measures active growing cancer. A measurement under five is considered normal. This chart shows what my CEA was doing in early July. You can see that it was within the normal range and then began a slow rise. At some point cancer really started to grow and it took off. It is important to note that CEA does not always serve as a good marker for active, growing cancer. At some point, it may stop being an accurate reflection of what is happening. In my case it has remained a pretty consistent marker of what is going on inside my body.
The highest point is right before we started chemotherapy. The decline in CEA is an indication that the treatment is having some effect on my cancer. It is encouraging to watch the numbers change so dramatically. This is not the reality for many people. I continue to be humbled by the way my body seems to respond to chemotherapy.
A few weeks ago we did some scans. The scans serve as another source of information regarding how the treatment is going. My latest scans showed,
It is important to understand that different techs are measuring these lesions. They do not measure from the same place each time, so it is reasonable to expect a certain amount of discrepancy in their measurements. However, anything that shows decreasing size, or stability is a good sign.
Ever since the hepatic artery infusion pump did damage to the bile ducts in my liver I have been dealing with significant issues in my liver. Every three months I need to have an ERCP where they go in and swipe the stents in my bile ducts to ensure everything can flow clearly. Many people have asked how they accomplish that.
It is an outpatient procedure that uses a scope which goes through my mouth and ends up in my liver. Kind of crazy, huh? Once we get going the whole thing takes about thirty or forty minutes.
What amazes me is how different I feel immediately after the procedure. In the days and weeks leading up to an ERCP my liver is not able to get rid of the waste it normally does. This causes me to be tired and I end up with brain fog. It is hard to do much of anything. There are several symptoms that let me know the stent is getting clogged, and then infected.
Again, we watch the results of a few blood tests to serve as markers. My ALT is one of them.
In the graph on the left you can see my ALT spike. This is one of those times my stents were clogged and infection was raging in my liver. We were able to treat it with antibiotics that time.
I watch these numbers very closely. They, along with how I feel give me an idea of what is going on with my liver.
I am very thankful for all the doctors and nurses who help take care of these things.
Attitude matters. How we treat those with long-term illness shapes their journey. Caregiver lesson; we must remember our words have power.
During a doctor visit gone bad, I was reminded of the lesson that attitudes matter.
A good attitude can build you up and a negative attitude can knock you down.
When already dealing with cancer, Dan benefits from kindness, caring, and compassion; from me as a caregiver and from others in his orbit.
I can learn this from those doing it well but I am also reminded of it when interactions are difficult.
Overwhelmed by life, I can turn away from helping others. Caregiver lesson; I have learned not to judge myself too harshly in those moments.
As a caregiver, I often have the opportunity to help others dealing with illness.
At times, I jump in and help them even though I am already busy. This makes me feel useful and fulfilled.
At other times, I turn away from the chance to get involved because adding one more struggle to my life is too much.
I have learned not to judge myself harshly in those moments and to avoid judging others for the way they react to those who are struggling.
Asking for help is never easy. Caregiver lesson; the caregiver is often the one who needs help. I can be more clear when the ask is for ME.
In my role as a caregiver, there are times when I need to request help from others.
As the person with cancer, Dan often feels that a request for help is because he is weak and unable to complete a task.
When we were moving pieces of trees that had been cut down, he refused to have me ask someone for help because he was able to cut the tree into sections himself. What he didn’t think about, was that moving the section of the tree out of the woods (my job) was difficult for me.
I was wanting to ask for help for ME, not for him. This is a time when clear communication could override feelings of weakness and the desire to overcome physical challenges.
NOTE: I (Dan) help Nancy with the editing and such with her caregiver journals. As I listened to this one I was reminded of something I wrote about our woodpile.
Where Nancy was looking for help...I was focused on filling the wood rack. All a matter of perspective. Kind of crazy how we can walk a journey so closely with someone and have a very different perspective.
There is a lesson in there somewhere…
Daniel has been a seeker his entire life, seeking a deeper relationship with Abba Father. He has served as pastor for American Baptist churches in New York, Massachusetts, and Pennsylvania. His passion is to "help people encounter God in the midst of their everyday lives." He writes with a transparency intended to allow others to see the struggles that lead to healing and life. Daniel currently serves as Spiritual Formation Catalyst for A Place in the Conversation.
Daniel's journey was disrupted when the doctor said, "You have stage IV colon cancer." Questions of "Why" and "If only" crowded his mind. Can one encounter God in the midst of a cancer journey? Join this seeker as he shares the pain and joys of this journey not of his choosing. Daniel's wife, Nancy, joins in sharing some of her thoughts, and feelings as she watches her husband fight his battle.