Removed

Friday, October 16^th I underwent surgery to have my hepatic artery infusion pump removed. During the surgery, Nancy was writing.

We stopped using the pump back in March. I experienced some of the rare side effects that do significant damage to your liver. Go figure.

The pump was never going to be used to treat my cancer. It was not very pleasant, required trips to Philadelphia for servicing, and meant I could not have an MRI.

An MRI provides the most precise picture of what is going on inside my liver. Clearer pictures equal better decisions regarding treatment moving forward. It was time for the pump to go.

The surgery was quick. After a few hours in the recovery room, I was on my way home.

My recovery has been relatively simple and straightforward. A few days of rest, and I am feeling much better. I am taking more naps these days. It is a sign that my cancer is growing. Some people say it is a sign I am getting older. While that may be true, I have learned to understand my body pretty well. Lower energy, more naps, something is not quite right in the liver.

I visit Dr. Saroha on Friday. We will make final plans, and then round four of chemotherapy starts on Monday.

That is where I am—enough about me.

During my surgery Nancy spent some time writing. She permitted me to share it with you here.

 

What is Strength?

What is strength?

My husband has cancer. Life is hard.

People call me strong. I don’t feel strong.

I feel empty.

But conversations with friends and shared stories begin to fill the void.

I lack words.

But then I sit next to him quietly. Together, in silence, we can recharge.

I feel helpless.

But we can rely on the wisdom of the doctors to know how to proceed.

I see darkness ahead.

But then we spend precious time together, and I begin to embrace hope.

I feel torn.

But then I take a breath and do the best I can for all those who need me at this moment.

I grieve loss.

But then I remember that the present is here. We can make the most of now.

I feel frustration.

But then I accept people for who they are and the limitations of their emotions.

I accept truth.

And live with faith in gratitude for the blessings we have had.

I feel empathy.

And share with others going through similar pain.

I give myself.

And approach each day of this journey as one I will not regret.

I feel joy.

And know that our love will not end but morph into an everlasting bond.

I stay here.

And hold his hand and his heart. And am glad that he “can’t do this without me.”

What is strength?

I am not sure. And please stop telling me I have it. But I will keep aiming high.

©Nancy Nicewonger 2020

Caregivers are special people. Nancy shares some of her thoughts on what it means to care for someone during this COVID 19 season.

Mom and Dad

Mom and Dad are living at The Friends Home. It is a great place for them to be and we are extremely thankful for the excellent care they are receiving. The facility has been on lock down for the past few weeks and no visitors are allowed. Monday was Mom’s birthday. We stood outside with signs, made a phone call to get mom to the window and then waved like fools to let her know she was loved and cared for. Care giving during this season has certainly taken on new forms.

My hospital stay

A “normal” hospital stay for me means Nancy is spending most, if not all, nights right there in my room. She is there to make sure I am well taken care of. Truth be told I end up speaking words of protection upon the doctors and nurses as Nancy advocates for my care. Her expectations are high, and she tolerates little in the way of not getting me the best.

There is something very comforting about waking up in the middle of the night and looking over to see her nearby.

This past hospital stay it was very clear there were no visitors allowed. I was in for eight days and Nancy and I could only talk on the phone. I missed the comfort of having her nearby.

As I would go on my walks around the ward the nurses would smile and say, “We just talked to your wife, she was checking up on you.” Even from a distance Nancy was making sure I was well taken care of.

A Caregiver’s Struggle

A few days after I was home Nancy shared one of her poems with me. If you follow this blog much you know that every now and then Nancy will write something that helps her process the reality we are experiencing. Her latest piece speaks to what it means to live and move as a caregiver amidst this Covid 19 reality we are all facing.

As you read it say a prayer for all those who are separated from loved ones because of Covid 19. Pray for peace, comfort, and most of all healing. Pray for those caregivers who want nothing more than to be near their loved one, but are unable to because of fear of transmitting the virus. God bless our caregivers.

 

Caring through Isolation

This journey of serious illness has been tumultuous. Full of ups and downs.
But we have done it together each step of the way.
United, you have allowed me to walk alongside you.
I have been able to uphold, support and share with you.

Isolation adds a new dimension to this path. Apart, it seems somehow harder.
News is not as easy to obtain or understand.
Worry creeps in when I cannot see you or talk to you.
Imagination takes the place of fact and knowledge.

Reasons for separation vary and the length of distance may change.
Sometimes treatment requires the patient to stay apart.
Family responsibilities may prohibit visits to a loved one.
For us, rules and fears of germs were the cause.

My fear was that after all this time, you were navigating seriousness alone.
Anxiety would overcome me each day as I waited to hear.
Pressure was placed on you to obtain, process and pass on
The information that was given then revoked then changed.

Watching a loved one suffer is heart wrenching and sad. Nothing one desires.
But to see it from afar brings tears and despair.
Being together again brought relief and gladness.
And hope that we will not have to be apart again.

©Nancy Nicewonger 2020

Nancy and I were married twenty-nine years ago today. At fifty years old we have spent more time together than apart.

Nancy spent some time reflecting on our years together. I share her thoughts with you here.

Learning to Appreciate

I have always gotten excited about our anniversaries. Dan enjoys our marriage. He never seemed to put as much stock in one day a year, but he did always remember. I, however, would look forward to the day to the point where it didn’t always live up to my expectation.

Anniversaries Past

On our fifth anniversary, Dan was taking me to Kowloon Restaurant in Saugus, MA. Before we left, I made a cookie sheet full of French fries as a pre-dinner snack. Kowloon’s has amazing Chinese food that you can never finish. If you are wondering, I was two days from giving birth to Joseph. I still remember looking at the booth, then looking at my stomach and not being sure I was going to fit. Dinner was good, even though I was exhausted afterward and we went home.

Another year Dan and I went to South Carolina and walked alongside a river. When we saw “Beware of crocodiles” signs, Dan pointed out that he didn’t need to outrun the crocodile, he just had to outrun me. If you have never seen our marriage in person, this is our norm. All good!

Here is to #29

This year we will celebrate our 29th anniversary. As I was looking forward to the day, which happens to be a Sunday, I realized how now instead of looking forward to the celebration, I appreciate the moment. Each milestone we meet (birthday, anniversary, Father’s Day, etc.) is a gift from God.

Every anniversary since 1990 has been a gift, yet I didn’t always see it that way. It has taken the threat of losing the opportunity to celebrate for me to truly see the joy in each moment. I am grateful to have seen the importance before it was too late. I wish, though, it did not take terminal illness for me to learn the value of appreciating each moment we have.

We may go out to eat tomorrow. Rayann may go with us. We might come home and have hot dogs and watch a movie on TV. I’m not sure what our celebration will be. Waking up together on June 2, 2019 will be a gift in itself. Everything after that will be extra.

May we each learn to appreciate what we are given as we are given it. And may we be grateful to God.

_____

We did go out for lunch following church today…and yes, Rayann was there with us…everything was as it should be.

“I’m going to buy socks.”

That was the answer to Dan’s question, “What are you going to do now?” We had just returned from the oncologist with the news that Dan would begin Chemo treatments again due to growth in his tumor. Dan was returning to work for the rest of the afternoon. Not me. I was buying socks.

“Why?” he responded.

“Because I need socks.” After 27 years of marriage, Dan takes my logic in stride. We parted our ways and I headed off to TJ Maxx. Shopping is not always wise during stress, but it was part of my plan. [Read more…]

My Piece is Done

When I last saw my oncologist he had a plan.  I was to get an MRI.  He was to talk with a radiologist.  We were to meet again in three weeks.  My sense was that he thought it would take me a few weeks to get the MRI.  Nancy is a pretty good scheduler of my appointments.  We left the oncologists on Friday and I was set to have the MRI on Monday.  Monday afternoon came and I got my MRI as instructed.

Impatient

A few days after my MRI I started to get impatient.  My “work” was done.  If Dr. Saroha was ready to meet and discuss the future I saw no reason to wait.  I called the office and told the nurse, “If Dr. Saoha is ready I am all set to meet sooner than three weeks.”  The next day scheduling called to change my appointment.  “Dr. Saroha would like to meet with you to review your MRI and talk treatment options.”

We moved my appointment to this Wednesday afternoon.  There is no use waiting.

I still feel good.  My energy level is okay.  I get tired but nothing like when I was first diagnosed.  This appointment will be interesting.

As we have traveled this journey Nancy has taken opportunities to share her piece of the experience.  Every now and then I will get an email from her with the subject line “something I wrote”.  I have to be in the right frame of mind to read it.  I know it will capture the heart of this journey in vivid and real ways.  Her latest offering is no different.  I share it with you here.

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