Tender Mercies Amid the Challenges

Written by Peggy Peterson Martin

My husband, David Paul Martin, age 74, passed away the morning of November 5, 2016 at a Hospice Facility in Las Vegas, Nevada.

It all started with blood clots in early 2016… first one in his right leg, then one in his neck, then two in his left leg. Dave’s Oncologist couldn’t figure out why a 74 year-old man would suddenly start getting blood clots. She scheduled him for a colonoscopy, because he had colon cancer in 2003, and an endoscopy which they were supposed to do the same day. However, the doctor didn’t receive the orders for the endoscopy in time, so he only did the colonoscopy, which was clear.

Then on September 25, 2016, Dave had a stroke and was taken to the hospital by ambulance. He was expected to make a full recovery and released, but he developed pain in his side and back which kept getting worse. He was also unable to swallow solid food. Less than a month after his stroke, he was frustrated by the pain and liquid diet. Unable to get satisfactory answers from his Primary Care Physician, he asked to be taken to the ER. He was admitted and spent eight days in the hospital where an endoscopy was finally performed, which showed a large tumor at the base of his esophagus. It turned out to be stage 4 esophageal cancer and had metastasized to his liver. We found out it was the cancer that caused the blood clots and stroke! Dave was allowed to go home to consider his treatment options.

2016, “Our last family picture,” Dave is in a white shirt and tie while the rest of us are in our grubbies because he wanted to have an obituary picture taken. We used something else, however. The blanket is covering his pajama bottoms!

Feeling a sense of urgency, all seven kids arrived within three days, including our son, David, who had recently moved to St. Thomas, Virgin Islands. This was a beautiful weekend together. Despite his almost constant pain, we shared many tender moments, laughs, tears, and memories. It was also a difficult weekend because Dave decided to forgo chemotherapy which would only have limited effectiveness at best. Hospice was called a couple of days later. Dave was getting weaker, but his wish was to spend his remaining days at home. Unfortunately, hospice couldn’t give him the medication he needed to manage his pain at home, so they transported him to their care facility in Las Vegas. He never regained consciousness once they medicated him. He passed away only ten days after his diagnosis. Though this was a very difficult time, we recognized several tender mercies from the Lord.

A year earlier, our daughter, Missy, and her family surprised us and drove all the way from their home in Charleston, Illinois, to show up at our son, Steve’s house in Herriman, Utah, for Thanksgiving dinner. All our other children were there, and it was the first time in over twenty years that we’d all been together for Thanksgiving. Dave was particularly touched and told Missy, “I’ll never forget this special surprise.”

In June of 2016, despite pain from two blood clots in his leg, Dave and I made a trip to Salt Lake City to see our kids and 23 grandchildren, including Missy and her family who were there on vacation. Jeff and his family from Henderson, Nevada, also just happened to be there for his wife’s family reunion. Our son, Rob, invited us to do some temple work with him. When we agreed, he decided to open the invitation to his siblings as well. Maybe it was Rob’s offer to buy everyone lunch, but all seven of our children and all but two of their spouses joined us in the Mount Timpanogos Temple that day. Having our whole family together was such a special experience, and everyone felt the significance and joy of being together there. It just happened to be our 49^th Wedding Anniversary! This is a memory I especially cherish since we didn’t make it to our 50^th which would have been next month.

As soon as Dave came home from the hospital after the devastating diagnosis, our son, Rob, took off work and stayed at our home for over two weeks, not leaving until after the funeral. I couldn’t have done it without him. He was a rock of strength and faith. He helped Dave with many of his physical needs which would have been difficult for me. While Dave was on his deathbed, we had a sewer flood through our house causing significant damage, both to the main floor and the basement. Rob discovered it and was there to help me bail water, trying to keep it from going into the bedroom where Dave was sleeping. Though we didn’t succeed, Dave never fully realized the extent of what had happened. Rob and some of our other children were invaluable in handling the mess and dealing with the plumber, restoration company, and insurance matters.

A tender mercy Dave had in his final days is that he was visited on two occasions by his deceased parents and brother, Leonard, who was killed while serving a mission for our church in Pennsylvania. This brought him great comfort and made him feel he would be with them again when he died.

Dave never became a burden. It was a pleasure to care for him. Several of our kids stayed in our home during Dave’s last few days. They took turns caring for him at night and spending time with him during the day. He was uncomfortable most of the time and in obvious pain, so it was heart wrenching to feel so helpless, but we were willing to do anything to give him even a moment of relief. His rapid decline and death were both devastating and merciful…devastating because it happened so fast and we felt cheated, hardly knowing how to prepare for or deal with our loss…merciful because he wasn’t made to suffer any longer.

We all feel gratitude for the few days we had with our dear husband and father before his passing. His love of family, great example, words of wisdom, and the blessing of serving him will stay with us long after the grief has passed.

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Dave and Peggy were one of the first ones to welcome us to our new neighborhood in Draper, Utah in the year 1996. Our friendship grew as Peggy and I participated regularly in a line dancing class for exercise. We also enjoyed serving together in a women’s organization for our church. In 2002, they moved to a new home in Boulder City, Nevada. Fortunately, the miles between us did not break the friendship bond. I treasure the memory of a few surprise visits when they came to Utah to see their kids. They always left with an open invitation for us to come to Nevada and stay with them. Dave encouraged us by commenting their home was wheelchair accessible. I regret we never made the trip. 

On this Memorial Weekend, I thank Peggy for recognizing and sharing her tender mercies during such a difficult time. I cherish our friendship and appreciate that when we’re together, it doesn’t seem like years have passed. We easily pick up right where we left off! 

 

 

 

Where to Turn for Help

I appreciate Christine Scott’s series, Laura’s Story, where first she recalls her sister’s birth and slow development and then the impact of her seizures and her battle with cancer. Sometimes the trials and health concerns seem to be never ending, causing stress and fatigue to the individual and the caregiver. In part three Christine wrote, “Yesterday I asked my mom how she did it and she said, ‘You just have to pull yourself up by the bootstraps and take it one step at a time.’ Then she smiled and added, ‘I’m made of good pioneer stock where the fittest survive.’”

Both statements are true, but what if you’re in a slump and can no longer pull yourself up by the bootstraps? I imagine every caregiver has periods where stress, exhaustion and/or depression set in. If those feelings last for an extended period of time, medical attention may be necessary. Stress and depression are treatable disorders. If you want to help prevent burnout, consider turning to the following resources I found on http://www.webmd.com/women/caregiver-recognizing-burnout?page=3#1 for help with your caregiving:

• Home health services—These agencies provide home health aides and nurses for short-term care, if your loved one is acutely ill. Some agencies provide short-term respite care.
• Adult day care—These programs offer a place for seniors to socialize, engage in a variety of activities, and receive needed medical care and other services.
• Nursing homes or assisted living facilities—These institutions sometimes offer short-term respite stays to provide caregivers a break from their caregiving responsibilities.
• Private care aides—These are professionals who specialize in assessing current needs and coordinating care and services.
• Caregiver support services—These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.
• Aging services—Contact your local Agency on Aging or your local chapter of the AARP for services available in your area such as adult day care services, caregiver support groups, and respite care.
• National organizations—Look in a phone directory or search online for local agencies (such as Family Caregiver Alliance), chapters of national organizations dedicated to assisting people with illnesses such as Parkinson’s disease or stroke. These groups can provide resources and information about respite care and support groups.

 What has been your experience with the above suggestions? How do you prevent burnout? Sharing your experiences in the comment box can help another caregiver.

 

Laura’s Story, Part 3

My name is Christine Scott. I’m a forty-six-year-old mother of five children and I grew up with a mentally disabled sister. In my first segment of Laura’s Story, I recounted her birth and slow development. In Laura’s Story, Part 2, I told about the impact of her seizures. Processing the memories and spending time reminiscing with my mother about my sister’s life is exactly what I needed—and my mom too.

Laura 1973

Cancer is a six letter word no one wants to hear. It’s the fear on everyone’s mind when anything abnormal happens to a loved one’s health. And no one wants to hear the word cancer associated with their child.

At the age of seven, Laura had this reoccurring lump on the right side of her neck. Our family doctor thought it was a puss pocket inside the gland and whenever it became enlarged he’d treat it with antibiotics.

Laura’s whole life up until that point had been a series of illnesses, which included reoccurring strep throat. After about two years, the lump stopped responding to antibiotics and she never really got to a point where she felt good. Children usually have boundless energy, but she was often lethargic. Even after the lump stopped responding to antibiotics, our family doctor didn’t suspect the possibility of it being cancer although Laura’s health continued to decline.

Mom was tired of not getting answers and she took Laura to another doctor who was Dad’s friend. He diagnosed the lump as Hodgkin’s lymphoma, so she took Laura to LDS Hospital where she underwent her first surgery to have the lump removed. Biopsy of the lump was sent to five different hospitals to be tested; two diagnosed it as cancer.

It took six months from the time the lump stopped responding to antibiotics until a formal diagnosis was made. Luckily the cancer was only in stage two and very treatable.

Laura was admitted to Primary Children’s Hospital to have her spleen, appendix, and gallbladder removed in preparation for radiation treatments. The doctors chose to treat Laura with radiation because it was believed to be less invasive than chemotherapy.

Christmas- Laura & Christine

During this time I had become a wild thing. This seems very fitting considering Where the Wild Things Are, by Maurice Sendak, is my all-time favorite children’s book, except my mom was too busy taking care of my sister to send me to bed without my super. I remember chewing up a carrot and spitting it all over the TV screen and then blaming it on Laura. Since she lacked the communication skills to deny the accusation, my mom believed me. I’m sure this blaming Laura for my foul deeds was a common occurrence.

We lived in a hundred-year-old house and behind it there was a wooded area where I would play for hours by myself or with the neighborhood kids. My imagination went wild. I caught snakes in the ditch and went on many adventures, which I’m sure would make good children’s stories if only I could remember them in detail.

Another memory which reflects my wildness is when Laura was in the hospital following her second surgery. I was left in the care of an elderly neighbor while my mom stayed by Laura’s side. At the end of her hospital stay, I remember being quite proud of the fact I’d managed to go a whole week without a bath.

Mom drove to Primary Children’s Hospital three times a week for six weeks for Laura’s radiation treatments. She would get me out of bed at some horrible hour, long before the rest of the world stirred. We’d drive the hour to Salt Lake. It’s funny how a child’s memory perceives things on a much grander scale. My recollection of this drive is of us winding through the mountains, which Mom told me was Memory Grove. At this time Primary Children’s Hospital was located in the avenues. I waited forever on hard chairs where I often fell asleep. We stopped at a convenience store and bought breakfast—pickled eggs—which I loved! Then my mom drove another hour to Ogden Weber so Laura could attend a few hours of school. After dropping her off, we drove twenty-five more minutes back to Morgan so I could go to school. I often arrived late for class.  Miss Compton, my first grade teacher, usually got upset with my mom for bringing me late. If she knew the circumstance surrounding my tardiness, I wonder if she would have been so quick to pass judgement on my mom.

Oshkosh, Wisconsin at the EAA convention (Experimental Aircraft Association. The long silver trailer at the side of us held my dad’s ultralights (motorized hang gliders). Laura was still recovering from her radiation and too weak to walk around so we pushed her in the wheelchair.

Many, many months later Laura was pronounced cancer free. I can’t imagine how my mom survived those surgeries and the six weeks of radiation treatments. My dad’s hang gliding business had really taken off and he couldn’t take the time away from work to help her, so she did it all alone. Yesterday I asked her how she did it and she said, “You just have to pull yourself up by the bootstraps and take it one step at a time.” Then she smiled and added, “I’m made of good pioneer stock where the fittest survive.”

At that moment I realized how much I love her and appreciate all she sacrificed for our family.

Thank you, Christine, for sharing more of your sister’s story. I love seeing this caregiving journey through a child’s perspective. It helps me understand what my own children went through because so much of my time and energy went to caring for their dad. I realized to a degree how hard it was for them and felt concerned about it. It’s so difficult to juggle all the responsibilities. Your mother is blessed to have you and I’d be willing to bet you brought her sunshine on those dark days.

I look forward to your next segment.

 

It’s Not About Me

It’s my pleasure to introduce you to my daughter’s father-in-law, Chuck Ferguson. Chuck was a caregiver to his wife, Susan, until she passed away from cancer in May of 2003. He cared for her in their home in Richfield, Utah. When she died, they had four grown children and five grandchildren.

Written by Chuck Ferguson

It wasn’t supposed to be that way. Of course, I suppose it never is. When Susan was diagnosed with cancer, it seemed like the end of the world. It was a devastating blow.

Susan Ferguson, 1972

It also was a reversal of roles. As a nurse, Susan had been a caregiver since before we were married. She had helped countless patients who were suffering through hard times with a gentle touch and a heart of gold. Now it was suddenly I who was cast into the role of caregiver. It didn’t come easily.

This past July 11^th marked 45 years since Susan and I were married in the Oakland LDS Temple. Marriage to Susan was the best thing ever to happen to me. She was the best part of me, and her spirit still is.

It was just before our 29^th anniversary that Susan was diagnosed with breast cancer. It came as a shock to our entire family. Susan had regular mammograms every year, always coming up negative. Nevertheless, she had a feeling that something was wrong and decided to have a biopsy. The results showed her at stage 3 breast cancer. Apparently, calcification had masked the cancerous growth.

Despite the bad news, we tried to maintain our normal routines while sandwiching in Susan’s treatments. We tried to keep a positive outlook, pinning our hopes on an experimental stem cell program that seemed promising.

Susan first received four regular courses of chemotherapy. The program then required Susan to be in the hospital for about a month, then another couple of weeks in offsite housing. Between the collecting of stem cells, and the procedure of intense “near death” chemotherapy followed by reintroducing the collected stem cells for recovery, the whole experience could be described as nothing less than torture. After all that, surely the cancer would be defeated.

And so for several months after the treatments we carried on a “normal” life. However, within myself there was a constant undefined feeling of uncertainty, near inner chaos. Looking back, I can see that it affected me in everything I did. I think I knew that, as much as I hoped otherwise, I had a certain sense of inevitable doom. And with it there was a selfish feeling of, “why me?”

Not long afterwards, Susan started having an ache in her hip that would not go away. X-rays showed a fractured hip caused by bone cancer. An oncologist made it clear that the cancer had spread and that Susan was terminal.

It took me a while to overcome the “poor me” syndrome. But finally I began to realize and internalize what became my mantra – “It’s not about me.” It was difficult to be in the ironic position of caregiver for the woman I considered the best caregiver I had ever known. Trying to live up to the standards that she had established as a caregiver were often frustrating. I was required to do many things for which I had very limited training. Fortunately I had the best possible teacher, Susan.

Ferguson Family, 2002

The next three-and-a-half years were the best years of our marriage as we made the most of the time we had left together. We traveled the world and enjoyed special times with our children and grandchildren. It wasn’t always easy for Susan. Sometimes she was sick, sometimes confined to a wheelchair, often tired, or in pain from the medications and treatments. I did my best to meet Susan’s needs, whatever they might be. Frustrations became challenges, and challenges became opportunities to serve the woman that I loved so dearly.

Being a caregiver for Susan demanded a lot—physically, mentally and emotionally. It demanded more than I ever imagined I could endure. But it was easier whenever I looked into my Susan’s eyes and reminded myself, “It’s not about me.”

Thank you Chuck for sharing your story and for reminding us that our challenges are opportunities to serve the people we love. I’m grateful for you and Susan and the four wonderful children you raised together, especially Eldin, who happens to be my favorite son-in-law. When Katie Mae and Eldin were engaged, I knew it was a good match. They both grew up with a parent giving care to another. I love your reminder that caregiving, marriage and life in general, is not just about me.

Chuck remarried the following year and lives with his wife, Suzie, and their daughter, Katie, in the Salt Lake Valley. I appreciate him sharing this heart-felt message with us!

Jon M. Huntsman’s Story

Information found on the Huntsman Cancer Institution Website:

The story is all too common: a man—a husband, brother, father, grandfather, and friend—is diagnosed with cancer. He seeks treatment, and doctors do what they can within their resources to save his life. He looks to his loved ones for support and encouragement. His cancer is treated successfully and he waits, hoping it will not recur.

While the narrative is common, it happened twice to an uncommon man: Jon M. Huntsman. Mr. Huntsman is chairman and founder of Huntsman Corporation, a multinational chemical manufacturing and marketing business with world headquarters in Salt Lake City, Utah. Through his cancer diagnosis, treatment, and recovery—which took place at top facilities across the United States—he felt a void in cancer care. “It felt impersonal, and for a disease in which treatment is often ongoing, it took place in environments that were cold and medical, places less conducive to healing.”

During his journey to recovery, Jon M. Huntsman and his wife, Karen, committed themselves to advancing cancer research and care for others, including the atmosphere in which that care takes place.

In 1995, the Huntsman family pledged $100 million to construct a state-of-the-art cancer center in Salt Lake City. Shortly thereafter, the Huntsman’s pledged another $125 million. Almost two decades later, Huntsman Cancer Institute and Hospital is world-renowned. The individualized care patients receive from multidisciplinary teams of doctors, nurses, radiation therapists, and pharmacist’s helps heal their bodies. Social workers and support groups help patients keep their spirits strong, and a wellness program helps them maintain fitness and good health with diet and exercise appropriate to their condition during treatment and beyond.

Huntsman Cancer Institute’s mission is to understand cancer from its beginnings, to use that knowledge in the creation and improvement of cancer treatments, to relieve the suffering of cancer patients, and to provide education about cancer risk, prevention, and care.

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It seems as though cancer touches every life, if not personally, then through a family member or friend. Nobody wants to hear the “C-word” diagnosis, and when I first heard my daughter Katie had it, I was filled with fear. I realize thyroid cancer is less serious than many other kinds of cancer, but it’s still alarming especially when it’s spread to lymph nodes. It’s comforting to know Katie is getting treatment at one of the best facilities.

I’m so impressed with the doctors, nurses and the beauty of this facility. I’m grateful for Mr. Huntsman. His generosity and passion for finding a cure for cancer made me curious about what drives a billionaire to donate so much of his wealth to this cause. My research only made my admiration grow for this man. His donations of more than $1.2 billion made him dropped from the “Forbes 400” in 2010. The world has 1,200 billionaires and he is one of only 19 to have donated more than $1 billion. What a remarkable man!

While researching I came across this six minute interview,  published on Nov 30, 2012. Jon Huntsman Sr. talks about his childhood growing up broke in Blackfoot, Idaho and how his goal now is to find a cure for cancer and die broke doing it.

Other cancer survivor stories can be found on the Huntsman Cancer Institute website, “Survivor Stories”, along with lots of other helpful information on cancer.

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Let Go of the Things You Can’t Control

A few weeks ago I got a call from my daughter, Katie. “Hi Mom, Eldin and I are in the neighborhood. Can we stop by for a few minutes?”

“Sure, what’s up?”

“Just thought we’d return the book we borrowed.”

“Sounds good. I’ll look forward to seeing you soon.”

When they arrived she handed me the book and said they had some bad news and some good news. This news was the real reason for their visit.

I suggested we all sit down. Katie hesitated, then took a deep breath and looked at Eldin. He softly said, “You can do it.” She took another deep breath and announced they had just come from the doctor’s office and she had thyroid cancer.

In total shock a hundred thoughts darted quickly in my head: How could this happen to my daughter? How could I have had no warning? Why didn’t she tell me she wasn’t well? Am I so caught up in Mark’s health issues I don’t notice my own child’s health? Was she afraid to tell me because of Mark’s health? I want to be the kind of mother my kids can come to and count on. I thought we shared important things. We used to be close or at least in my mind. What have I done for her to keep such important information from me? Why wasn’t I there for her during the testing? The horrible thoughts kept darting in my brain and in my heart. I tried to fight the tears, I wanted to be strong for her, but they welled up anyway.

Katie said, “The good news is the doctor said if you’re going to have cancer, this is the best kind of cancer to have. It has a 95% cure rate.”

I thought of my dear friend, Michelle, who had part of her thyroid removed and I knew she lived a healthy life. But the tears kept coming, not just because of the diagnosis, but also because my daughter hadn’t turned to me for comfort or strength. I felt like a failure as a mother.

Katie said the testing just started a couple of weeks prior just as a precaution. She really didn’t think anything would become of it. She hadn’t been feeling pain. The only symptom she had been experiencing was fatigue. She was surprised when her doctor discovered the lumps in her neck.

I’m realizing once you’re a mother, you are always a mother. The feeling of wanting to make it all better never goes away. For an unreasonable moment I resented my son-in-law for taking away my daughter at the young age of nineteen. I wasn’t ready to let her go then and even now that she’s been married nearly eleven years—I still struggle with letting her go.

As my children age, I become less needed. Their lives are busy and filled with opportunity. I’ve heard my own mother warn about this cycle and know she struggled with it too, so at least I know I’m not alone.

When our children are young it’s physically draining meeting all their needs. As they get older and don’t need you it becomes emotionally hard. Letting go is a difficult thing to do and it starts when they become teenagers, struggling for independence. It wasn’t easy then and now that they’ve gained their independence, it’s still hard at times. My guess is it will never be easy.

When you love someone it’s just hard to let go. I raised my children to be independent and productive adults, and they learned it well. I should be grateful. I am proud of them, and as hard as it is to let go, it’s rewarding to watch them fly independently!

 

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Feeling Lucky

Nestled in the beautiful Wasatch Mountains just above the University of Utah Hospital is the Huntsman Cancer Institute (HCI). The front of the hospital is nearly all windows that overlook the Salt Lake Valley. Not only is this a beautiful hospital with breathtaking views, it has great reviews. I add mine to the thousands that are already out there.

I had never been to HCI until this week. Our daughter Katie was recently diagnosed with thyroid cancer and chose to have her surgery at HCI on March 5, 2014. As we drove up to the hospital into the circular valet parking area I was immediately impressed with the appearance of the facility. It was classy, warm and inviting. It did not resemble any hospital I’d ever seen and I believe I’ve seen every hospital in the Salt Lake County. As Mark and I entered into the main lobby area it felt spacious and opened. There was a gorgeous seating area, with nice comfortable furniture, an information desk on one side and a grand piano on the other. A beautiful staircase of cherry wood and steel took you up to the next floor or you could choose to take the elevators which framed with marble. I thought I had walked it to the finest hotel in Utah.

Katie’s surgery was on the third floor. The waiting room had a beautiful view of the valley as did all six floors. The waiting room was decorated with several shamrocks hanging from the ceiling and placed on the walls by the check-in area. The shamrocks added a lucky charm to the room and I said, Katie, don’t you feel lucky to be treated in this place?” She chuckled at my question.

As Katie was checking in, I noticed a plaque “Cancer Is So Limited—It cannot destroy love.  It cannot shatter hope.  It cannot corrode faith. It cannot destroy people. It cannot kill friendship. It cannot suppress memories. It cannot silence courage. It cannot invade the soul. It cannot steal eternal life. It cannot conquer the spirit.”

I showed it to Katie, inspired by the sentiment that cancer cannot take away what’s most important. As we sat for a few minutes waiting to be called into the surgical waiting room, I decided it was the perfect time to give her my gift. She laughed as she unwrapped the gift and stated it was the coolest T-shirt she’d ever seen.  Back in the surgical waiting room I laid the T-shirt over her blankets so the good luck charm would influence her and the doctors. She was a good sport about it and it made a fun conversation piece for the long wait.

The surgery went well, however the cancer had spread to at least two lymph nodes, so those were removed with several others that surrounded the two infested lymph nodes. It was almost a three hour surgery with another hour in recovery before she was wheeled into her room.

What a welcome sight she was for Eldin, Mark and I. It seemed like we had waited forever. Her color was good along with her spirits. She was relieved as we all were that the surgery was behind her now.  The nurses were as wonderful as the doctors. They welcomed her to Hotel Huntsman with narcotics and took very good care of her. The following day she was released to come home.

The rooms were spacious and comfortable. Check out the beautiful molding in the bathroom. There is also molding around the ceiling. What an amazing place to treat a dreadful disease. Thank you, thank you Jon Huntsman Sr. for a beautiful facility and a caring staff. You are one of my heroes for doing an awesome job. I’m feeling lucky for my daughters successful surgery!

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