Source: What’s in a name?
Every now and then I come across a book that helps give me language to express what I have been thinking and feeling. This is one of those books.
Living with a sense of Awe
Rolheiser speaks to how there is a loss of wonder, amazement and awe in our world today. In our rush to find an answer for everything we have lost our ability to be in awe of anything. Rolheiser points to the problem of unbelief among believers and a loss of our ability to live and move as contemplatives within this world as one of the biggest things that keeps us from seeing God alive, well and working in our world today.
Roadblocks to Encountering God
Of particular value is Rolheiser’s work on three main things which stand in the way of our fully experiencing God.
Excessive Narcissism – “When we stand before reality preoccupied with ourselves we will see precious little of what is actually there to be seen.”
Pragmatism – “doing counts for everything, being counts for nothing. We cling to what we do, not who we are, as if it (doing) were life itself.”
Restlessness – a sense of being unsatisfied with our life, a greed for experience – “when restlessness becomes excessive…our lives become consumed with the idea that unless we somehow experience everything, travel everywhere, see everything…then we are small and meaningless.”
No longer a captive
The longer I read the more I found myself with words to explain some of what I have wrestled to express and share. Rolheiser believes that when Jesus said, “I have come to set captives free” he was speaking to all people.
If I can be set free of my self-centered thinking and way of viewing the world, if I can be set free from always doing and be at peace with my being, if I can learn to live content with the gift of life God has given me…there is life to the full.
Respond to the longing
Much in our society fights against such thinking, against living and moving in this way. Rolheiser’s gift is that he gives solid language to express what many have felt as only a longing deep within their soul that there must be something more.
Back in May Nancy and I had an opportunity to do a radio interview on the Tim DeMoss Show (WFIL studios in Philly).
Tim is one of Nancy’s friends from highschool. It was a great time to reconnect and share some of our story. Our interview starts around 17:50 in the show.
When I first met Dr. Soulen treatment felt like such a long way off. Before I knew it Nancy was driving me home from my Microwave Ablation Tuesday night.
I have two small puncture wounds on my right side where the needles went into my liver. With each day there is less pain, and I am healing well. One odd thing is that the symptoms I feel now (difficulty taking a deep breath, and pain in my right shoulder) are the exact symptoms I had when first diagnosed in May of 2016. As my liver slowly heals I am feeling better. I feel much better today than I did when I first came home Tuesday night.
The procedure itself was a blur. I went into a prep room where I had two IV lines put in and got to meet my anesthesiologist. As he talked about the upcoming procedure we got sidetracked. He had questions about what it was like to be a pastor and I liked his pen. I have ordered some new pens which should be arriving shortly. Nancy just sat there with a dazed look upon her face as Joe and I carried on as if nothing significant was about to happen. I found our conversation very relaxing.
A few minutes later I was walked back to the room where the procedure was completed. After a few minutes of getting things set up I had a mask put over my face and that is the last thing I remember.
As I woke up in the recovery room I was told everything went great. I have a follow up appointment in about a month. We will do scans and bloodwork before the appointment to be sure that the treatment has accomplished what we desired.
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.
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.
A bad news, good news story you must read to the end. The past month has been a rollercoaster ride. I opted to wait until we had solid plans before sharing.
God is Good All the Time…All the Time, God is Good.
In early April, I was feeling worn down and tired. When I visited my oncologist, I asked to have my scans completed a few weeks early. I feared that the metastases in my liver were growing again.
Good news: Turns out I was tired due to one of the medications I take being out of balance. A simple change in medications and I am feeling much better.
When the scan results of April 24th returned, I was NOT “unremarkable.” Instead, the report summary read, “slight interval progression of hepatic metastases.” One of my metastases had decided it was time to grow. While disappointing, this was not unexpected. Dr. Saroha had always been clear that in his opinion, it was not a matter of if this would happen, but when it would happen.
Specifically, the report read:
“Between 10 and 20 metastatic lesions as before. No new lesions identified. In the right lobe posterior segment, a poorly defined mixed solid and cystic lesion measures 4.1 x 2.9 cm on series 20 image 27. Previously, this measured 2.3 x 1.8 cm on series 18 image 32.”
At first blush, this may seem like bad news. It is important to bear in mind that my original scan results from May of 2016 read “the liver is replaced by innumerable metastases.”
Armed with the new scan results, it was now time to come up with a treatment plan. My oncologist worked to get me a referral to the radiology department. In the past, my cancer was so widespread that the radiologists have refused to meet with me. In May of 2016, I had cancer in my colon and “innumerable” lesions on my liver. We needed a treatment that would target the entire body, chemotherapy was the best tool available. When I started treatment again in February 2018, my colon was clear but there were still too many lesions on my liver for a targeted treatment such as radiation. Chemotherapy was once again the only option.
A LARGER TEAM
Nancy and I waited patiently to see if this time would be any different, would the radiologists be willing to meet with me? Three weeks ago, I met with Dr. Soulen, an expert in interventional radiology. We talked over multiple radiation options. In the middle of our conversation, he said, “If you were one of my family members, you would not be here with me, I would have you meet with a surgeon.” He went on to explain that anything he did using radiation would be palliative care while a surgeon could potentially offer a cure.
A week or so later, Nancy and I met with Dr. Roses. It was a great visit. We talked about different surgical options and weighed risk vs. reward. In the end, we passed on surgery for now. The amount of chemotherapy I have had has most likely damaged my liver. While the liver is regenerative, there is no guarantee that my chemo laced liver would behave normally. At one point during our conversation, I laughed and said, “So what you are telling me is that the chemotherapy that has saved my life is now the thing which is keeping me from having surgery and being totally cured?” Dr. Roses smiled and said, “That is correct, and yes, you better believe that chemotherapy saved your life.” He then pulled up scans from May of 2016 and compared them with my most recent scans. The images tell an amazing story. My once cancer-ridden liver is looking much better these days.
To be clear, these specialists will NOT be replacing Dr. Saroha. Adding them to the team means that we can call upon their insight, expertise, advice as needed while we move forward.
In the end, we opted to have radiation treatment with Dr. Soulen. On June 4th I will undergo an outpatient Microwave Ablation (MWA). MWA is considered palliative care. Palliative care is “specialized health care focused on improving quality of life for people living with serious illness and their families.”1 While this is still only palliative care, it is a one-day outpatient treatment with limited recovery time vs. six or seven months worth of chemotherapy treatments.
I will be under slight sedation while they use imaging to guide two probes (like knitting needles) into the base of my growing metastases. Once correctly placed they will use microwave energy to kill it. If all goes well I should be home in time for dinner.
We can go back and redo this MWA multiple times should we need to.
This has been a crazy month or so. The rollercoaster of emotions has been rocking and rolling all over the place. Disappointment that the cancer is growing. Hopeful that we could speak with a radiologist. Even more hopeful when there was the talk of surgery and a cure. Discouraged that surgery is not an option at this time. Eagerly anticipating my radiation treatment on June 4th.
Amidst all of the emotions, there has been a strange sense of peace. Some of that comes from experience. Nancy and I have traveled this road before. We are learning how to manage our expectations as we hear options and make treatment plans.
The majority of our peace comes from the fact that we have witnessed God’s faithfulness over the past three years. God’s faithfulness amidst the darkest of moments and those times which make our hearts sing with joy.
A FINAL WORD
I have struggled to write this post. It has been in various forms of completion for about five days now.
While I am filled with joy at what this news means for my future there are a few things which give me pause…
- As I think about what God is doing in my life right now I cannot help but think of those for whom the news is not as positive. I have been in treatment for three years. There are people I used to see around the oncologist’s office who are no longer there. During these past three years, I have walked with families as they said goodbye to loved ones battling cancer. As I look out over the congregation on Sunday morning there are husbands, wives, sons, and daughters whose loved one lost a battle against cancer. I wonder, “Why am I receiving this blessing?”
During the past three years, I have heard of people whose cancer went into remission or was cured. While I would rejoice with and for them there would sometimes be a voice that would speak from within me that would ask, “Why am I not experiencing the same blessing?” There is a part of me that hesitates to share good news because I do not want to cause angst for those struggling with their own illness or the difficult journey of a loved one.
- Finally, I do not think we always talk about blessing such as this in the healthiest of ways. To be clear, I have done nothing to deserve the good news I am currently hearing from the doctors. I am a weak, fallen, sin-filled human being who is struggling to follow the leading of God each and every day. I fail miserably. When we hear of blessings such as this and use phrases such as “praise God,” or “God answers prayer” what we are really saying is that what we are seeing take place is what we wanted to see happen. Would we be as quick to say, “Praise God” if I was writing to share that I was entering hospice care? God would be no less worthy of praise.
What do others hear when we use language such as “Praise God” or “God answers prayer” when we are receiving the outcome we desire? What do we communicate when we say “God answers prayer” in a situation such as this? How are those words heard by someone who prayed for healing in the life of a loved one, only to watch them pass away? Words are important, how we use them matters.
We are to praise God in times of joy and seasons of mourning. I guess what I am trying to say is that we ought to be sensitive to the way in which we speak and how what we say is heard by those who are traveling a different journey.
MORE THAN OKAY
For those who have been wondering why the blog has been quiet. I am okay. I am actually much better than okay. For the past three weeks I have been getting more exercise and am fighting to eat better.
When I first heard the cancer was growing again I was about ready to give up. I started to entertain thoughts of taking disability and spending the remainder of my life writing. Radiation offered a different path and a hope that I previously dared not dream about. Meeting with a surgeon opens even greater doors that are still available should my liver demonstrate that it is, in fact, healthy and strong. Something about those glimmers of hope, combined with some time spent at the Jesuit Center have infused me with an energy that once shaped every day of my life.
God is Good All the Time; All the Time God is Good…and Worthy to Be Praised!
1 Center to Advance Palliative Care, https://www.capc.org/about/palliative-care, (accessed 23 May 2019)
To get a copy of The Journey Continues you may visit the book’s website or any online retailer. The Journey Continues is the story of how God met me in the midst of a stage IV colon cancer diagnosis and helped me find peace and purpose.
Every now and then there are moments in life that are worth trying to re-create.
Easter Sunday provided one such moment. Nancy is a baker. She finds it relaxing and enjoys the process of decorating her creations. It is not unusual to find her in the kitchen creating some sweet treat after a stressful day. She finds the process of baking and decorating fun and I do not mind helping get rid of her creations.
As part of our Easter celebration Nancy made a special desert. She invested a lot of time Saturday preparing our cupcake cake.
When Rayann and I came across the finished product we were excited. We also could not help but notice that it was leaning heavily to one side. Afraid to cut into her creation until we were given the official “green light” we smiled and talked of how we were unsure it would stay upright until Easter day.
As we talked I was reminded of another leaning confectionery creation. This one is from a few years back. In fact it was way back in June of 1990. Nancy and I were getting married. The service was complete and we had just made our way to the reception. There was a level of activity taking place around the wedding cake. Apparently it had some structural issues and was leaning to one side.
The cake generated a lot of conversation. I had a simple solution, cut the cake before it fell over and then Nancy and I could be off on our honeymoon. Judy (my mother-inlaw) did not think that was appropriate and felt we could risk the cakes stability.
In the end our leaning cake generated one of my favorite wedding pictures. The photographer captured the moment Judy was pointing out the leaning cake to Nancy. I love this picture, it captures a moment of our story that is worth recreating.
So when Rayann and I happened across a leaning cupcake in our kitchen we could not help but stop and try to recreate that moment from the wedding oh so many years ago.
To be clear, you really had to look hard to see that the wedding cake was in fact leaning. More importantly the cake tasted delicious. Even more importantly the beauty of the bride out shown whatever chaos may have been caused by a leaning cake.