Newsletter – Volume 38

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Newsletter – Volume 38

March 18, 2024

This Week

Confessions From the Back of the Pen
Meet Deb...

Deb Halsey is my wife’s (Carol) older sister, and she will readily concede that she has always been a bit of a rebel and outside the box thinker; what we might lovingly refer to as a black sheep messenger.  But the part of her story I want to share here is the care she provided for her husband in the last year of his life as a cancer patient.  She went the extra mile – and in many ways that is what life is really all about.

Mark and I lived an active life.  He was a hard worker and a craftsman. He freely loved his bonus kids that came as part of the package when he married me.  We loved the outdoors and playing volleyball together.  But all of that changed when he received his cancer diagnosis.

It all started innocently enough.  He complained of headaches and then developed double-vision. And so we did all the things that managing those symptoms might require.  We went to the doctors, who gave us varying diagnoses – everything from migraines to kidney stones.  Mark was never one to complain, so even though I felt increased anxiety about what might be going on, his reassurances held me steady.

Then after a day of playing volleyball together, he mentioned that he had some low back pain along with other symptoms, and so we got a CT Scan. Then we heard the life-changing news. The doctor told us that he had stage four bone cancer that had metastasized from prostate cancer. We were both in shock. The next morning when we got up, I noticed that Mark was having trouble walking. He made his way to the dining room, sat down and said that he had no feeling in his feet.  Within a couple of hours, his entire lower body went numb. We went to the hospital, and an MRI of his spine was done and we were told that a large tumor had crushed his spinal cord in the thoracic region.  They did emergency surgery to try to decompress the spinal cord, but Mark never regained the ability to walk.

How could this be?  

I was dumbfounded.  Obviously, everything about my life changed at that point.  Care-giving became my priority in addition to my full-time job. This all happened during COVID. I began working from home so that I could be close to him. I was always exhausted, and I eventually took intermittent FMLA. That enabled me to get paid for the three days I worked, and also be fully present to him on the two days I was off. I was grateful to enlist the help of Mark’s sister who drove to stay with Mark, read to him, and keep him company once or twice a week.

Mark was with us for another year which I was grateful for since this was much longer than the  weeks to months prognosis he was given. I internalized my anger and pain. The decline was painful and difficult to watch. Mark missed his work, and was understandably frustrated being confined to a wheelchair. Once he told me that he’d gladly endure cancer if he could still have the ability to walk and do the things he enjoyed. Ten months after his diagnosis, he said the words that had come to mind more than once, “Debbie, I don’t know whether I’m living or dying.” How painfully difficult it must have been for him. When he was very close to the end, he told me that he didn’t know what to do. I said, you don’t have to do anything. Look for the light and you will see Jesus with open arms. He will welcome you home. 

Word of the Week

Supportive

Adjective: Providing encouragement or emotional support

We all have weeks where the intensity factor ramps up, and one of the questions we typically process along the way is how will engage our community for help and support. Interestingly, our first inclination is to hesitate. We don’t want to be a bother. Everyone  has their own issues. I should be able to do this alone. But is any of that really true – or is it just pride that keeps us quiet? I have chosen to be a bit more open about our cancer journey and the resulting support has been so life-giving! Before going into surgery, I read through numerous messages and prayers I was sent. I was deeply moved by the depth of love and care shown to us. It was literally overwhelming. It was such a great reminder of the significance of even the simplest message of ‘I’m praying for you’! Not to mention the hugs and care expressed in person. Sometimes we are the one with the margin to extend support, but sometimes we are the one in need of it. Don’t be afraid to ask. Givers can’t give unless receivers are willing to receive.

Something I Celebrated This Week

41 Years With Carol

Historical Details: Thursday evening March 10, 1983, Pieter K. Van Waarde and Carol E. Cone were joined together in holy matrimony at First Methodist Church in Tulsa, Oklahoma.

This past week, Carol and I celebrated our 41st wedding anniversary. I remember the day as if it were yesterday. It was Thursday night before Spring Break, not the typical night for a wedding, but we wanted all our friends and family to be there (before they headed out of town) – and everyone we wanted came out. It was a grand affair! Even my grandparents made the trip from the Netherlands. It took place in a beautiful downtown church. Our dear friends Jim and Angela Beise sang at it, our mentors Hugh and Mary Morken prayed a blessing over us, and the chaplain of the university Dr. Larry Hart reminded us to ‘leave and cleave.’ We rode away in a carriage and launched our lives as a married couple. As is the case with every couple, we have known great highs and lows and raised three amazing children: Pieter, Mallory, and Curran Van Waarde. I want to use this opportunity to thank Carol for 41 of the best years of my life. I cannot think of another person I would have rather done this with…

A Report From Piet’s Visit To Mayo

From Carol

Promise worth holding on to: Every twist and turn in life is a new chapter with a purpose.

Piet’s surgery finished up by 2:30 this past Wednesday afternoon. We are staying at a hotel just a few blocks from the clinic. It has a small kitchenette and a nice sitting area for us to relax. We feel fortunate to have a comfortable and convenient space to recover from the intensity of the day.   

In the surgical procedure, three body parts were scraped, ablated and biopsied. We already knew the bladder needed prompt attention, but the ureter and kidney were the mysteries unfortunately, cancer was found in both. 70-80% of the right kidney is affected. Biopsies will be returned within a week to let us know if it’s low/high grade. They suspect low grade (thankfully), and the gradation will determine our next steps and decisions. Piet has had several scans and an MRI this week as well. After a meeting with the urologist tomorrow (3/19), we will head back to Texas. We hope to get the pathology report by week’s end. Then we will consult with the medical team and map out the strategy for treatment.

We’re so very grateful for praying friends calling on our loving Father on our behalf. What a true blessing!!! Thank you from both of us! Piet and I keep reminding ourselves that the Lord is most certainly with us, and we can trust him with whatever comes our way. One day at a time! And yes, we are at peace (for this day at least).

What I’ve Taken From My Experience At

Mayo

Over these past five years on my cancer journey, I have had a variety of medical care experiences. Some good and some not-so-great. Being here for the past week has given me a fresh understanding of why Mayo has such a stellar reputation. I think it’s the unique combination of four things:

  1. Care quotient – the patient is the focus, and everyone from receptionists, to orderlies, to nurses, to schedulers, and the docs have the same vibe!
  2. Attention to detail – things are laid out so well. Stairways are clean, underground walking paths between buildings w/ plenty of signage, great communication via text, email, patient portal.
  3. Superior technology – best equipment, patient comfort and convenience considered at every turn, schedule meticulously laid out and kept.
  4. Top talent – at every critical position they have the best of the best. And it builds trust and prompts a sense of peace within the process. Super impressive!

 

All in all, I marvel at the goodness of God in all of this. This is not a journey I wanted to take, but now that I am in it, I can say with complete candor, never has God made himself more evident than what I have experienced walking through all this.

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