"My New Normal" Archives

Doing and Being

May 1, 2020 By dnicewonger@gmail.com 1 Comment

The past few weeks have been challenging, on many different levels. I have found myself revisiting lessons regarding the difference between doing and being.

The Start

As the pandemic was starting to move into full swing here on the east coast I was in the hospital. The pump which has been delivering chemotherapy directly to my liver was apparently harming my liver. I found myself battling liver failure. I am grateful my doctors got that figured out and my liver numbers have just about returned to within normal range.

When I arrived home from the hospital, we were just beginning to question what the appropriate response to the corona virus was going to be. A week later we started using language like “social distancing.” Before you knew it, we were under stay at home orders and everyone was living a new normal.

Quiet / Active Engagement

As a pastor my life is a mixture of time spent in quiet and intense engagement with people. I have learned how to balance the two. I need time spent with people. A day where I move from appointment to appointment is normal. Listening to people share of their life and helping them see God in the midst of it brings me great joy. I also recognize the need for me to get away and be still and quiet. My times of retreat and quiet study are important. Without them I have little to offer people when we are together.

Strange Times

The first few weeks of the stay at home orders were extremely hard for me. I was not feeling well, and I could not do those things which give my life meaning and purpose. I was cancelling event after event of what had been promising times of learning and engagement with people I care deeply for. Not meeting for worship on Sunday morning felt very strange. Recording my sermon on Thursday or Friday from the comfort of my study stranger still. The strangest of all was getting up on Sunday morning and slowly making my way through the day.

The Jesuit Center reached out to let me know that they were closed and that the retreat I had planned to lead a few weekends ago was cancelled. A few days later they sent word that my personal retreat was not going to happen. I was mourning all that was not to be.

As I began each new day I found myself reflecting on all the things I could not do. Part of me was frozen. How can you plan for anything when the future is uncertain? My normal pattern, or way of doing was disrupted and it was really messing with how I looked at and viewed just about every aspect of my world. [Read more…]

Calling vs Career

March 26, 2020 By dnicewonger@gmail.com 3 Comments

So what does one think about during a week in the hospital? I have found myself thinking about the difference between a calling and a career.

Shift Change

To begin with, I want to be clear, careers are great, we all need one. Something magical happens when we can marry our career with a calling.

I began to think along these lines as I wondered who my nurse would be at each shift change. There was a difference between them. All were good, some simply awesome.

Revelation

The difference did not hit me until this morning. My roommate is in a rough spot. You can pray for Willie. His news is not good and it is rough being here alone hearing that your options are becoming fewer.

A nurse was working with him and asked if he wanted to wash himself up. He said he would. Honestly, it is something that is just a bit outside his ability level right now. One of the CNA’s jumped in and said, “Mr. Willie, let me help you with that.” She spent the next twenty minutes helping him get all cleaned up.

I recognize the difference between the roles of a nurse and a CNA, but there was something else going on within this interaction. Whereas the nurse provided the basin of water and said, “ring me when you are done and I will come back” the CNA saw the deeper need and jumped in. [Read more…]

Where to begin?

March 21, 2020 By dnicewonger@gmail.com 1 Comment

Early 2020 was a fantastic season. I was full of energy and got lots accomplished. As we entered Lent things took a different turn. Where to begin?

The Past Months

In mid-February started having trouble keeping food down and my food intake dropped significantly. I would not quite call it a fad diet, but I have managed to drop over twenty unwanted pounds. Many dieticians have met with me. Each one is concerned with my current weight drop. As I explain the history, the fact that the steroids from my treatment led me to put on over fifty pounds, their concern lessens. Our conversations usually end when I give them my “target weight” and commit to trying to eat but confess I will not become anxious about the situation until we drop below said target weight.

The Straight Facts

March 10th my symptoms became so severe I had Nancy drive me to the ER at 1 am. The upside was there was no traffic and the ER was basically empty, four people in the waiting room. I was seen quickly and admitted even faster. This visit we treated symptoms and once I felt better they released me home. It was a mistake.

March 17th was a normal visit with Dr. Schneider. I was not with him long before it was determined that I would be a “direct admit” into the hospital. My symptoms had returned and were worse than before.

Thus began a large number of tests. The most significant finding was that my liver enzymes and bilirubin numbers were out of wack. Like extremely out of wack. As with every step on this journey I have learned much. For example, your liver creates bilirubin and needs to get rid of it through the liver into the intestines. Bilirubin is that magical substance that gives color to our poop. Elevated bilirubin numbers mean that your body is not processing that waste effectively.

Multiple Thoughts

The concern quickly became liver damage. There were multiple schools of thought on the cause. The hospital doctors believed it was caused by the chemotherapy I was receiving via my pump. Dr. Schneider (my oncologist) did not believe that was the case. All those numbers had been within acceptable ranges (we track them on a regular basis) and then suddenly jumped. Dr. Schneider was of the opinion that something else was going on.

Options ranged from a virus to damage caused by the chemotherapy, with a few other ideas in between. Soon different medical teams were taking sides and pushing for their opinion. [Read more…]

Reacting and Responding

February 2, 2020 By dnicewonger@gmail.com 2 Comments

Reacting and responding are the two words that best describe life in the Nicewonger household for the past few months. In the midst of it all…God is Good!

REACTING TO MOM’S FALL:

Mom took a tumble in the church parking lot on December 8th. The next month and a half were spent reacting and responding to the myriad of issues her fall unearthed. Thankfully mom did not break anything. She did receive news about restrictions on what life would look like post-fall. Mom and Dad decided to move into The Friend’s Home in early January. They are living there now. I do not think it is fair to say they are settled. They are settling.

The Friends Home is a short walk from First Baptist Church of Kennett Square. I can join them for lunch at least once a week. If they need assistance, I can get there quickly and help as we all transition to a new season of life.

Between my surgery in November and mom’s fall in early December, this year’s holiday season seemed to fly by. It felt like we were holding on for mere survival rather than taking time to enjoy the holidays as we have in the past. Nancy and I find ourselves looking for a moment to sneak away and be still, so we can stop reacting to chaos. [Read more…]

Life Update

December 27, 2019 By dnicewonger@gmail.com Leave a Comment

2019 is going out with a bang! My treatment schedule is progressing well.

LIFE HAS A WAY

The last time I posted anything was December 6th. Two days later, life took an unexpected and rather crazy turn. Mom fell on her way to church and ended up in the hospital. She stayed there for a few days and has been in rehab since then. Dad came to live with Nancy and me while mom was recovering.

TRANSITIONS

During that time, mom and dad decided to transition from their home to the Friends Home in Kennett Square. Nancy and I have been spending lots of time helping them get ready for the move. Daily trips to visit mom (twice a day) bring great joy to both mom and dad. They have been together for fifty-seven years. This time apart is very disorienting and disturbing for them both. Everyone is anxious and excited to make a move to the Friends Home.

TREATMENT CONTINUES

During all the transitions in mom and dad’s life, I have continued my bi-weekly treatments. So far, I am handling them fairly well. It is hard to determine if my feelings of fatigue are related to chemotherapy treatments or the other transitions taking place in our world.

My treatment schedule is falling into something of a recognizable pattern. Adding a second oncologist and second treatment day does make for some interesting looking calendars, but the longer it continues the more familiar it becomes.

PUMP ACCESS

Every other Tuesday, I travel to Philadelphia to access my pump. The plan is to fill it with chemotherapy every other visit. The pump will run for two weeks giving chemotherapy directly to my liver. The times we do not fill it with chemotherapy, we use saline to ensure the lines do not clot and the pump remains functioning. Accessing the pump is fairly straightforward and is a technical marvel. The process takes no more than twenty minutes.

SYSTEMIC CHEMOTHERAPY

On Wednesday, after my pump access, I visit Dr. Saroha and we do a systemic chemotherapy treatment. We are using one familiar drug and one new drug. I am experiencing all the expected side effects, and am managing them as well as can be expected.

One side effect is acne. Rayann has passed on some of her cast-off facial wash products, and I now have a more elaborate and detailed personal hygiene program than when I was in high-school. Go figure; I dodged bad acne in my teen years to get it when I was in my fifties!

WHERE AM I?

Spiritually, emotionally, physically, I waffle between times of great strength and periods of utter exhaustion. In the midst of it all, I am constantly reminded that “God is Good All the Time…All the Time God is Good.”

THE SPIRIT SPEAKS

Just this afternoon, I was in the office and had a conversation with a friend that reminded me of how God works best in the midst of weakness. They shared a story of utter weakness and how in the midst of it, God helped them see things clearly. As they talked, it was clear that a season most of us would consider an utter disaster was being used for good. How is it that God so often uses our weakest moments to accomplish the most in us and through us?

I am humbled by the privilege and honor to continue on my journey, whatever it may hold.

I am confident that there will be times of great JOY, along with seasons of struggle. Praise God that one thing remains true. In the midst of it all, I (we) do not have to walk alone.

In preparing this post I came across a previous post that really spoke to me. It was one of those times your words are directed more inward than outward. A time you speak healing and wholeness to yourself more than to others. It came from my journal, a very private place, and I share it here again. The words spoke to me, maybe they will to you, My Private Wrestling.

MOVING FORWARD

There are many partially completed posts sitting in a file ready to be finished. I am praying that in the next few weeks, life will return to some semblance of “normal” (whatever that is), and I can get back to writing on a more regular basis.

Until then, know that I (we) are well. Thank you for your prayers.

May the rest of today be filled with wonder and amazement as you are yet again surprised by the gift & grace of God.

Three Weeks Post Surgery

December 2, 2019 By dnicewonger@gmail.com Leave a Comment

Tomorrow will mark three weeks post-surgery. I am ever so slowly starting to feel more like myself. Resting to recover is not a strength of mine.

Recovering

I have spent the better part of the past two weeks resting. I move from my bed to a chair and watch mind-numbing hours of television. I am increasingly convinced that the downfall of the western world will come through what we are led to believe is “must-see tv.”

Today (Monday, December 2nd) is the first day I have truly felt like doing anything more than simply trying to make it through the day till bedtime. Resting to recover is not a strength of mine.

A big part of my struggle has been the “bug” that I picked up during my last night in the hospital. Throughout the years, I have heard the phrase, “sharing is caring” …but honestly, my roommate could have cared just a little less, and I would have been fine.

Miscommunication

Nancy and I received word that my next appointments would come the Monday after Thanksgiving, so we made a quick run to North Carolina for Thanksgiving. I wanted to see Joseph. I also wanted Nancy to have an opportunity to see her family before my treatment began. I know she will not leave me to go visit once I enter treatment. We arrived the Saturday before Thanksgiving.

On the Monday of Thanksgiving week, I got a text and phone message setting up an appointment for the next day in Philadelphia. After a few calls it was determined that I did indeed need to be seen before Thanksgiving. We left late Monday and arrived home Tuesday evening.

While not the trip we planned we did get to see Joseph and spend time with our family down south. The travel was very smooth and I felt well enough to drive part of the way.

[Read more…]

The Week After Surgery

November 22, 2019 By dnicewonger@gmail.com 2 Comments

It has been ten days since surgery. I am slowly recovering strength and beginning to move in familiar ways.

SURGERY

Surgery to implant the Hepatic Arterial Infusion Pump was completed on Tuesday, November 12th. I severely underestimated the significance of the surgery. Dr. Roses assured me that he told me it would be “a significant surgery.” I guess there is a difference between hearing those words and living through it.

I planned to come home on Friday after surgery. Those in positions of authority were convinced I needed to stick around until Sunday morning.

THE PUMP

The pump was successfully installed. On Friday, after surgery, we tested it. Testing the pump involved accessing it via needle and injecting a radioactive tracer and then taking some pictures. The goal was for my liver to “light up like a Christmas tree.” If that happened and nowhere else lit up, the pump would be working correctly. The picture shows my liver “lit up like a Christmas tree” with no radioactive tracer leaking to other organs. Success! The very bright section in my lower liver is the metastasis that we are going after.

HOSPITAL

My time in the hospital was surprisingly very peaceful. I spent most of my days sleeping or walking in the halls. Before we went to the hospital I told Nancy, “there was no need for her to stay with me, I would be well cared for.” It turns out I desperately wanted her there with me. She was an amazing comfort and help. Nancy stayed every night I was there, and it was reassuring to wake up at all hours and know that she was with me. I cannot express how blessed I am to have her walking this journey with me.

The nurses and other staff who cared for me were truly amazing. Some I saw for only one night or day shift, others became regular fixtures in my life. I began to pass along copies of my book, The Journey Continues, as a way of thanking them for the part they were playing in my journey. I am continually humbled by how the simple act of sharing our stories can bring people closer in a very short period of time.

SELF-FOCUSED

I would wake up each morning around two am. Early in the morning was a good time to get up and go for a walk through the empty halls. One such morning I started my rounds, and God helped me shift focus. Up till that moment I had been very self-focused. I was concerned about my pain, when I was getting out of the hospital, my recovery. As I walked the silent halls, I began to hear other sounds. The beeps and whirs of machines delivering medicine to other patients. I recognized the low grunts and groans as people tried to remain comfortable and sleep through the night. The conversations between nurses and staff as they discussed how best to care for patients. Slowly my focus shifted from myself to the rooms around me.

Walking the halls, I began to pray. Pray for the patients that they would know healing and comfort. I offered prayers for the families represented by each room, that they would know peace and strength. Walking past nurses and staff, I offered prayers for wisdom, discernment, and blessing.

Walking and praying, I lost sense of time. Before I knew it I had walked further than any previous time leaving the room. Safely back in bed I reflected on my prayer walk. Could it be that the strength to walk further came not from within but from the fact that I took my eyes off of myself and looked at others?

A PARTING GIFT

I was prepared to come home on Saturday. I had hit all the magic metrics laid out by the doctors and nurses. Everything ranging from being able to put on my socks, brush my teeth, to proper bowel function. My doctors wanted me to stay one more night just to be sure I was okay.

Two am Sunday morning, I got a new roommate. At Four am, my nurse woke me up and asked me to come into the hallway. “Your new roommate has a respiratory infection; we are going to move you to a new room.” With that I was ushered off to a new room.

Sunday afternoon, I began to cough. Tuesday I was in with my primary care doctor. Every time I coughed it felt like the stitches were coming loose. I am much better now. During my worst coughing fits, I will confess that I did reflect upon some of the scenes from Aliens. There were moments if felt like I was going to “give birth” to my pump.

There will be a de-brief about the need for “one more night” the next time I see my doctors.

PRAYERS FOR BEN

Can I ask you all to be praying for Ben? Ben is a two-year-old boy who is part of JAM Christian Daycare. Ben was recently diagnosed with Leukemia. Here is a note from his mom.

Today, we found out that Benjamin has B-Lymphoblastic Leukemia. We are in a state of shock and devastation, but our team of doctors are angels sent from Heaven. We have learned a lot from them, and even though it’s overwhelming, we have a plan that starts tomorrow. We are told that the cure rate is 80-90%. Please pray for Benny as he begins his first procedure and his first day of chemotherapy tomorrow.

I appreciate all the thoughts and prayers you have sent in my direction. Would you be willing to add Ben and his family to your prayer lists?

Thank you

God is Good All the Time…All the Time God is Good!

#TJCdn