The Third Blessing of Cancer: Enlarged Hearts

Last weekend tipped me over and I am still trying to get back up. I am recovering well from the first stem cell transplant, but having my daughter hurt and being completely incapable of taking care of her has hit me hard. What could I do to help her on the day she broke her leg?  Nothing. She was cared for by Paul, family and friends while I was in the hospital.

For someone who was taught to be highly independent and self-sufficient, this was emotionally startling. I am not used to being completely out for the count, helpless or totally reliant on others. I am happier when I have my bases covered and when I can help someone else in need.

Or am I? Can you see a lesson coming? I can. Cancer is teaching me at a very deep level to both give and receive service, and the purpose in doing so.

I have learned the lessons of independence, but like every good thing, it can be taken to the extreme. Taken too far, independence is an inward focus. It is pride in my own abilities. It is ingratitude for the contribution of others. It ignores my reliance on God. It is self-satisfaction that no outside help was required, but is also smug justification to avoid service for others.

Fortunately, total independence is out of the question. We had help coming into this world and we will need help thriving here. This weekend helped me to see the divine purpose of interdependence.

Leo Tolstoy tells a short story about Simon, a shoemaker, who went into town to collect on money owed him. He would use the money to buy sheepskin to make a winter coat for his wife. Unsuccessful in collecting the money, he headed home empty-handed. On his way home, he met a man who had no clothes, food or shelter. He invited the stranger into his home, gave him clothes to wear and food to eat – to the great resentment of his wife. He reminded his wife of God, and she relented to have him stay. Michael the stranger became a master shoemaker under the direction of Simon. Several patrons came wanting shoes, including a woman who had twin daughters, one of whom had a crushed foot. Simon, his wife and Michael learned that this woman had rescued the twin girls as babies. Their father had been killed by a falling tree and their mother had died of sickness the same week, crushing the infant’s foot as she died. This gracious woman had taken the girls and loved them as her own, even through the death of her own infant son. Only then did Michael reveal that he was an angel, sent back to earth to learn three truths before he could return. He shared his observations:

“I know that God does not desire men to live apart from each other; and therefore, He has not revealed to them what is needful for each of them to live by himself. He wishes them to live together, united, and therefore, has revealed to them that they are needful to each other’s happiness…

I have now understood that though it seems to men that they live by care for themselves, in truth it is love alone by which they live. He who has love, is in God, and God is in him, for God is love.” What Men Live By, Leo Tolstoy

I am completely overwhelmed by the service and love that has been showered on our family since August. Love is Karen and Brian, who opened their home to me and Esther and James, who opened their home to Megan. Love is Sharon, who anticipates every need. Love is my sister with 5 kids offering to take Megan, completely doped up on Oxycodone and in tremendous pain, into her home after surgery. Love is my friend Kristin coming to care for Megan and staying overnight when my sister caught the flu the very next day. Love is the whole Hudgens family pitching in to help her for an entire week, day and night.  Love is Jayson and Michelle helping her next.

Love is Roger fishing Neal out of our pool when he saw him drowning. Love is Tami moving to Mexico and taking care of 7 boys every day. Love is Montse taking Neal to the doctor when mom and dad are both out of town and Melanie and Cliff making a steam tent. Love is SanDee and Tim making sure your children have friends. Love is Angelica and Cecia, self-designated angels to the kids until I return.

Love is Nancy’s flowers and Kristin’s gifts and their great concern and care for me and for Megan. Love is Jenn sending a picture of your child in an email every week from school. Love is Janalee bringing a cheesecake in her carry-on luggage all the way back from New York. Love is big sister visits. Love is Georgia’s favorite shirt and massages.

Love is food and company from Jane, Linda, Robin and Lisa and all of my dear friends from my old neighborhood. Love is music from Ann, Brian, Michael and Aunt Diane. Love is a warm blanket and a pair of fuzzy slippers from SueAnn and Neal. Love is a book from Bill, Shelley and Dad. Love is Esther’s constant friendship. Love is a pair of pajamas from Mom. Love is your visits, emails and phone calls.

Disease can be a blessing. If there were no illness, we would have fewer opportunities and reasons to provide comfort and relief, to become better listeners and more compassionate people.  Acts of charity strengthen our relationships, enlarge our hearts and help us find true joy.

It is said that many prayers are answered through the service of others. Our prayers have been answered by you. I see the wisdom in God’s plan for the nurturing of His children – as we care for one another, we all grow. You have taught me a greater way to give; to be more attentive to the needs of others, to take the time to sit and listen, to reach out with greater compassion, to serve without being asked. I have seen you do these things and I will work to follow your lead. Because of your service and sacrifice, I am learning to expand my own heart. Thank you, all.

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My BMT Family

The  architect who designed Huntsman Cancer Hospital is a friend of ours. I called him one day to thank him for designing such an amazing facility. I didn’t mean to choke back tears on his voicemail, but I did. Walking into Huntsman is a peaceful and comforting experience. It has a decidedly warm, non-hospital feel to it where people smile at you in the elevators and lobbies, and patients in the waiting areas look content.

I know that the physical space helps to create this welcoming feeling, but the real warmth comes from the people who are part of my care.

When I first arrived, another patient mentioned how the staff was like his extended family. I am glad that I am now part of this family. These remarkable people are all capable and competent, but they are more than this. They care about me and about their other patients. They do difficult things every day to provide care, but are also willing to do small and simple things for everyone visiting the clinic – patients, caregivers and visitors.

You get to meet these extraordinary people. (I wasn’t able to get photos of everyone, but I am still working on this. We need a few more trips with the camera to get everyone, but I will update as I get them.)

This is my welcoming committee, Bernie and P.T. They organize the comings and goings of the patients and are always happy to provide water or lunch.  P.T., did your wife have her baby yet??

My next stop after arrival is the lab, where I get weighed, get my blood pressure taken and get my height checked to see if I have gotten shorter since yesterday.  April and Jolin both work in the lab full-time and go to school, so they are very busy people. They are bright spots in my day.

April will hold your hand if you need extra support and they both politely ignore my regular face-wince as my port is accessed to draw labs.

I need a picture of Elaine here, who is the best port-accesser ever.  Her Doberman just won the show at the National Dog Show in Kansas. Congratulations, Elaine!

In the infusion room, I receive chemo, fluids or any other treatment. This is also the room for stem cell collections. It is a very busy room during the week and keeps everyone hopping. I hope to get photos of all of the nurses including Jill, Deb, Malene and Laurie. This is Erline, a sharp nurse who is kind and knows her stuff. I am grateful for her help and her efficiency, especially for helping me get through the not-so-great days.

Huntsman Cancer Center is one of three facilities in the nation to do the stem cell transplant as an outpatient procedure.  As I am on the tail end of my first transplant, I see the great benefit of this. Except for situations that require hospitalization, you get to sleep in your own bed, eat the food you like, visit with family and friends  and heal faster. Part of this healing is seeing the same friendly faces and having continuity of care in the clinic.

Abby and Andrea work under my doctor as Physician’s Assistants and help assess and direct care. I still need a photo of Abby, but this is Andrea. They are both bright, talented, capable and kind. I still like them, even though they are responsible for my bone marrow biopsies. I try not to harbor grudges.

 

 

Huntsman offers additional resources to help with the treatment process. One resource is a Coordinator, who makes sure that all of the details of treatment are scheduled and, well, coordinated. Carol makes sure that tests, treatments, medicines, dates, nutrition and counseling are all provided, depending on what I need.

Geri is a counselor and great listener. She helped me learn how to deep breathe and relax during the emotionally and physically stressful parts of the treatment. She is sympathetic and understanding and has made the entire process easier to handle.

Of course, I owe a great gratitude to my doctor, Dr. Guido Tricot.  I admire his experience and his depth of work in the field of Multiple Myeloma. I appreciate his thorough but unhurried nature. I am grateful for his personal concern, even with all that he has to do. He has great responsibilities at Huntsman and rightly so. He will not only successfully care for patients but will greatly advance the efforts of myeloma research and cures in the coming years.

I am lucky to have joined this amazing extended family. They have both capacity and compassion, a truly perfect combination for me and for my new myeloma friends.

Thank Goodness it’s Monday

They say things come in threes. We are glad it’s Monday. Last weekend’s triple-header was a little overwhelming.

On Saturday, I was in the BMT clinic receiving my daily meds and had a low-grade fever.  The fever wasn’t high enough to be admitted, but while Paul and I sat in the infusion room, we received a call that Megan had fallen 15 feet off a rope swing at a friends cabin and had broken her femur.

The paramedics took Megan to Primary Children’s Hospital and five hours of surgery, one titanium rod, three screws, and a few stitches later, she was back together.

While Paul was waiting outside Megan’s operating room, my fever had spiked and the doctors asked me to check into the University of Utah  Hospital BMT Intensive Care Unit. By 7 p.m. Saturday night Megan was out of surgery and both Megan and I were checking into our hospital rooms at the same time.  By late Saturday night and into Sunday, my fevers were running in a four hour cycle of spiking at 104, bringing it down with Tylenol and rising again as the Tylenol wore off.

Back in Mexico, our youngest Neal had developed a severe croup and was having difficulty breathing. It was one year ago, that Paul made a 2 a.m. visit to a Mexico emergency room for Neal’s croup. Last night his little voice could barely eek out “Dad, I’m sick”. Croup is manageable if you know what to do, but if you don’t,  it can be scary. Tami was briefed on croup and our friends in Mexico came over for additional training on how to make a steam tent, which medicines to give him and gave Neal a blessing.

 

Paul's Daily Walk

 

Paul did what Paul does best. He remained calm and took care of his family. The only bonus for him was the skywalk connecting the University of Utah Hospital with Primary Children’s Hospital. For the next three days, Paul walked back and forth between the hospitals, checking on his high-maintenance  girls.

Needless to say, the angels living among us kicked into high gear.  Esther and James took care of Megan’s paramedic transport to the hospital and stayed to make sure she was in good hands.  Sondra and her husband came up to help. Sharon thought of everything and brought it, taking turns caring for me and Megan. Our dear friend Parley Williams, was the resident on duty at the Primary Children’s Hospital and was one of the doctors watching over Megan.

Megan had many visitors with wonderful care packages; Nancy and Dusty, Kristin and Sadie, Joel and Lani and their daughters, Jayson and Michelle and Alysia and Sean and their kids, and the Peery family.

Thank you for your great love and support. We are the recipients of love in action.

Paul and Jenny

The Second Blessing of Cancer: Revisiting Control

The nurse administering my stem cell transplant chemo commented, “You seem to be doing better than the last round of chemo.” I thought back to my first day of chemo when everything was unknown, uncertain and just plain scary. Of course I am doing better, I thought. In a two week time period I had just been informed I had cancer, that there is no formal cure, that we needed to choose a treatment path, that we needed to decide where to locate the family, that we had to get insurance approval for treatment and that I needed a 24×7 caregiver. I had no idea what to expect during treatment because I had never done this before. Yes, losing the perceived control I thought I had over my life shook me up considerably.

The unknown has a way of instilling fear into humans, who like predictability. Just look at the financial markets. We all get a little skittish when we don’t know what to expect.

Cancer changes your world in a matter of hours. Because the severity of the trial is beyond your power and personal control, you must rely on a team of people to get you through. You are suddenly dependent on doctors and research that offer medical treatment, on caregivers for rides, food and water, and on family and friends for emotional support.

I ask, how much control do I really have over my life? The extremes are easy to consider; passive resistance that I am controlled by fate, or hard-headed arrogance that my life is completely my own. I am realizing now I am both dependent and independent. I am an agent of choice and change and yet do not command the universe or its workings. I control much of my own destiny and at the same time am dependent for all that Heaven provides – food, air, sun, and the breath of life. There are two forces at play: God’s will and my own personal will.

I’ve been reading about Abraham Lincoln who also learned about God’s will and personal will as he made every effort to stop the Civil War. From his inauguration in 1861, he fought to save the Union. When war began, he worked tirelessly to end it. In 1864, he saw God’s deliberate hand in the events and came to the conclusion that God would end the war at the appropriate time, when He wanted it to end. “The purposes of the Almighty are perfect” he wrote. The purposes “must prevail, though we erring mortals may fail to accurately perceive them in advance… We hoped for a happy termination of this terrible war long before this; but God knows best, and and has ruled otherwise.” He then noted the importance of personal will. “Meanwhile we must work earnestly in the best light He gives us, trusting that so working still conduces to the great ends He ordains. Surely He intends some great good to follow this mighty convulsion, which no mortal could make, and no mortal could stay.” “The purposes of the Almighty” letter to Eliza P. Gurney, September 4, 1864, The Collected Works of Abraham Lincoln, 7:535.

Like Lincoln, I realize that success will only come as I seek to understand God’s will and then do what I can with my personal will to “work earnestly in the best light he gives” me. So how do I determine God’s will for me? In a word, prayer. “Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other” Prayer, Bible Dictionary

Recognizing and understanding God’s will seems to come to humans in a gradation of maturity: First, we can ignore His will completely. Second, we can selectively obey his will. Third we do His will out of duty, but with irritation. Fourth, we can do His will with a glad heart.

Seeking His will takes a bit of humility. “To be humble is to recognize gratefully our dependence on the Lord—to understand that we have constant need for His support. Humility is an acknowledgment that our talents and abilities are gifts from God. It is not a sign of weakness, timidity, or fear; it is an indication that we know where our true strength lies. We can be both humble and fearless. We can be both humble and courageous.” Humility

The best part about humility is that it opens the door to a teaching opportunity. I no longer know everything, so what do I need to learn? My plan is no longer my own, is there a bigger plan for me than the one I had in mind? All doors and windows are literally thrown open to a new view of the world. My predictable world is shattered, but for the better. Perhaps there is no personal growth in a comfort zone.

At the same time, no matter what happens “to” me, I still make daily choices about how I react to each life situation. As Stephen Covey puts it, “Between stimulus and response is our greatest power – the freedom to choose.” The magnificent gift of free will is the greatest gift we have, next to life itself. What do I still control, even during cancer treatment? My gratitude for the great kindness of others, my attitude, my communication with family and children, my thoughts and ideas. As I recover and resume normal activity, the list will grow.

But I will forever know that bringing God’s will and my personal will into alignment will always be in my best interest. “God knows best,” says Lincoln. And I am inclined to agree.