The 10th Blessing of Cancer – Holding On Part 2

Paul just got back from a trip to Mexico City where he had meetings with a successful businessman. As they chatted about their families, the man mentioned that he had four children but one had died. He shared the story of his 8-year-old boy who went into surgery for a tonsillectomy and died in the hospital because of complications. Paul had great sympathy for him, but he stopped Paul as soon as he saw the pity in his eyes.

“Please don’t feel sorry for me. This experience has become a gift. We know he is in a better place than we are. We were able to donate his organs to save the lives of eight children. We created a foundation to help others with similar problems and we have now helped over 60 children. We have a perspective of life that we would not have had otherwise. It has been a blessing.”

Paul shared our experience with my cancer and his response was, “Congratulations.” Paul was taken aback. He said, “That is a unique way of looking at things.” With great consideration and kindness the businessman said, “Congratulations that you now have a perspective that very few people will ever have. You have a new view of life.”

That exchange was like a bolt out of the blue for me and it helped tip me over the edge for a sorely needed attitude adjustment. There were two key life questions that he answered to get there.

First, what am I supposed to learn from this? Second, how can I help others because of my experience? (And not in spite of the struggle, but because of it?)

My mother-in-law is the best at the first question. When she hits something hard in her life, she always says, “I know I’m supposed to be learning something from this. What is it?” She does this sometimes through tears but the answers always come because she is asking the right questions.

Happily, I’m starting to realize that the only way we really grow is through fits and starts. We’re like that 5-year-old that is struggling to tie his shoes, crying the whole time. Or the teenager who had her heart broken by the guy she thought was the bomb. Or the widow who’s lost her husband. Or the mom or dad who’s been diagnosed with cancer.

I’ve headed down this road, but I can tell you I wasn’t all there emotionally. After that man’s glorious attitude, I think I now am.

We’ve been working on the most effective way to help accelerate a cure for multiple myeloma, and we’ve had some ideas in the last year or so. Finally, we asked each other, “If my myeloma came back today, what would we do?”

We decided that we would first meet with my excellent doctors, but then we would do some homework on clinical trials and find one that would be right for me.  So I jumped on http://www.clinicaltrials.gov and found over 540 open myeloma clinical trials. I can read about three and then I’m done. Really, which one would you pick from a list like:

1. ARRY-520 + carfilzomib for multiple myeloma

2. Oral MLN9708 plus lenalidomide and dexamethasone versus placebo plus lenalidomide and dexamethasone in adult patients with relapsed and/or refractory multiple myeloma

3. Open-label study of TH-302 and dexamethasone with or without bortezomib in subjects with relapsed/refractory multiple myeloma.

Yikes. Now imaging 540 of these!

This tells me all of just about nothing. I have no context, no relevance and am more confused than when I started.

I learned that less than 5% of adult cancer patients (including multiple myeloma) join clinical trials  and that in childhood cancers, over 75% of patients are in clinical trials. High participation rates mean that the docs can blow through their research at a faster pace, coming to some important conclusions. Kids have seen childhood cancers cured becuase of this fact alone.

So I created a weekly internet radio series called mPatient Myeloma Radio, the “Innovation in Myeloma” series. I interview myeloma researchers and they share their latest research and describe their open clinical trials and why patients might want to join.

You can see the site here: www.mpatient.org  (and can always show support by “liking” it on FB or following on twitter @mpatientmyeloma)

Patients won’t join studies if they don’t understand the research and what better way to understand the research than to hear it straight from the study creator?

It’s a work in progress and the learning curve has been steep. I’m having my own fits and starts with lots and lots of mistakes as an amateur who majored in PR but clearly not in broadcast journalism. But I’m learning. I’ve passed the deer-in-the-headlights stage and have moved on to ask intelligent questions and it’s starting to get fun. I’ve learned how to not drop a doctor in the middle of an interview. I’ve learned that if you have two windows open during a show, you will hear a 30-second delay the entire interview. I’ve learned how to tweet and post on Facebook. I’ve learned that self-promotion is o.k. when you are trying to cure an incurable cancer @mpatientmyeloma (ha ha) and I’ve learned you all need to subscribe to my mPatient Minute newsletter so I can get more readers! The road has been really, really hard but slowly I am making the climb.

Paul always says that once you get headed in a direction and get moving, there are doors that open up on either side of the path. That has been consistently true for everything we’ve done. How lucky I am to be married to such a smart man.

What am I supposed to learn from this experience? It’s just too much to mention. What can I do to help others because of it? I hope it’s to help find a cure for multiple myeloma.

In college, Paul came to Provo and was sort of dissatisfied with his college experience. He created Backstage Cafe so Provo could have a dinner theater, Sil’s Ivy Tower Dance Club so he could meet more girls :), and The Student Review so students could have an alternative student newspaper. I see myself wanting to do the same thing for my cancer experience. I don’t know why we all have to face the same challenges when we are diagnosed with multiple myeloma. The http://www.mpatient.org site is a start and I will continue to see what I can do to help patients and drive to a cure for multiple myeloma.

With divine direction and support, this is my version of holding on.

The 10th Blessing of Cancer – Holding On Part 1

In the last post I shared the story of a dear friend who was forced to let go, but there is another important side of cancer – holding on. Sometimes if we push hard enough (and the Lord is willing), we can elbow ourselves a seat at the table.

A friend wanted to share his wife Heather’s story about her battle with another rare cancer caused by asbestos exposure, mesothelioma. She had great reasons to fight and win her battle over cancer; a future life with her husband and new baby. She went through intense chemotherapy, radiation and surgery.  She’s been clear for 7 years and has been able to enjoy her life a little more carefully, but cancer-free. Here’s her story:

Why should we hold on? It’s a legitimate question, especially for those who find holding on a rocky road. For me, I think that I have a work here that only I can do – a personal work of sorts – and that I’m not done yet. I have family to support, friends to lift, tears to dry, encouragement to give, things to create and love to share. My sense of identity and purpose is grounded in my faith in the future – here on the earth and beyond.

A wise Japanese thinker noticed that faith in an eternal life is connected with a greater sense of purpose. A lack of faith in a plan beyond this life can give us a “why try” attitude:

If there is nothing beyond death, then what is wrong with giving oneself wholly to pleasure in the short time one has left to live? The loss of faith in the “other world” has saddled modern Western society with a fatal moral problem.

[Takeshi Umehara, “The Civilization of the Forest: Ancient Japan Shows Postmodernism the Way,” At Century’s End: Great Minds Reflect on Our Times, ed. Nathan P. Gardels (San Diego: ALTI Publishing, 1996), p. 190]

And so in the spirit of purposefulness, I’ve settled on trying to make a difference. I have a deep sense of purpose lately, and one with the clock ticking. 

I’m going to follow this up with another post that shares our first project: mPatient Myeloma Radio. In short, we want to help find a cure for multiple myeloma. Just for the record, I have a vice-grip-like fixation with holding on. 

The 10th Blessing of Cancer – Holding on and Letting Go

Yesterday I had an urgent feeling to call a new friend.

I met Julianne through my friend Robin about 3 weeks ago. Julianne was struggling with a rare cancer and Robin thought I could help in some way. When we met, there was an immediate bond that only comes through a deep understanding of a shared trial. Julianne had 6 children ages 15 to 2 and had homeschooled them all before her health would no longer allow it.

Her cancer is called Adenoid Cystic Carcinoma and only affects 1200 people per year (myeloma is also rare but affects 20,000 people per year). It started in her salivary gland and had grown up into her ear and check, across the nerves in her forehead and to the other side of her face. She had undergone an operation to remove the cancer, but it grows along nerves, so they removed her facial nerve and and re-grafted a new one in a later surgery. Fragments of the cancer had remained and now her cancer had returned. She had participated in two clinical trials which put the cancer at bay but not for long. She had lost the ability to chew, hear and talk but radiation treatment had brought it back for a few weeks.

She showed me her feeding tube and she sipped on a smoothie as we talked about her journey in her clinical trials and treatment. That week a fire had broken out in her home and they were living in a hotel with her in-laws. She was at Robin’s to spend the day with a doting friend and rest while allowing the kids to play outside of a hotel room. We talked about how she and Robin had taken videos so her kids could remember her and how they had gone shopping for items she could leave for her children on their most important days to come – their baptisms, their mission farewells, their weddings. She wanted them to know how much she loved them, how devoted to them she was as a mother.

When I got home, I started calling around. If there is one thing we know how to do, it is to be pushy when it comes to healthcare. I didn’t know details about the treatments she had already received, but found a clinical trial at the University of Virginia. I spoke with the trial administrator and she told me what she needed to enroll Julianne. I called the founder of the ACC foundation and got a list of ACC specialists Juianne may want to consider. I gave Julianne the information and talked to her about getting more information so we could continue.

She has been on my mind but I didn’t want to push her. There is only so much advice you can take sometimes and you have to follow your own path.

Yesterday, the thought kept pressing on me that I needed to give her a call. The thought came stronger and more frequent. I was in the middle of helping a friend make a pillow and matching comforter for her grandson’s bed. “Call Julianne. The pillow can wait.” I excused myself and said I needed to call a friend. Her husband picked up and I asked for Julianne. “She’s here but she can’t talk,” he said. He shared with me that last night she went to sleep and today she was not able to wake up.

I awkwardly invited myself to come and see her and without knowing me, he was gracious enough to agree to have me come over. Oh, how my heart aches for her and her family. I stopped at Costco and bought some breakfast items (people always bring you dinner but for a big family no one usually thinks about breakfast) and some books for the kids. 

Scott is a doting husband who has cared well for his wife during her struggle. He was calm and composed and strong. His parents were there to help with the kids in a temporary rented home with a few sparse furnishings. Julianne was sleeping on a bed with a simple blanket.

Sitting with her, I felt calm and immense sense of peace. You could feel the love that Scott had for his wife as he touched her leg and told me about their experiences of her treatments, her progress, his knowledge of what would happen, the fire and the children. Scott was strong and stable but had his moments of struggle. “I understand how people can be taken after they’ve lived a full life and are dying in their eighties. But a young mom whose kids need her? I don’t think I understand that.”

After my own experience and our experience with Paul’s brother and the years that followed his death from leukemia, I have a powerful understanding of the influence and continuing watchful care that a parent eternally has, regardless of their presence here in mortality or in the next life. I know they are there. They watch, they care, they counsel, they help. They are present at important life events and cheer on their posterity. Their presence may not be constantly felt, but they never stop loving or caring or watching over their loved ones. 

When we were in Mexico, I sent an email to Reed’s delightful second grade British teacher. “I’m sorry that I can’t make it to parent teacher conference. I am in Houston getting treatment. I’m looking forward to being his mom again when this is all over.”

She replied, “You are still his mum.”

I had to be reminded that even though I wasn’t present, I was still his mom. And I already knew. During my transplant I had been given ideas and impressions about what my kids were doing and what they needed. My impressions were spot on.

My friend describes cancer as a tug-of-war between this world and the next. For all the heartache and the pain there is balancing joy. His plan is still a good one. He knows this is not the end – just a proving ground, a school, a place to learn and prepare. And with an outpouring of love He has an endurable law of compensation. The lessons are sometimes painfully deep, but with the depth also comes permanence to the learning. Sometimes we are meant to hold on and sometimes we are meant to let go. The ultimate ending is glorious and can include a forever family, knit together with an unbreakable bond.

And so I say, Julianne, you are still their mum, forever and always. You can be with them throughout their lives even to places you may have found unreachable in mortality. My heart and prayers are with you as you and your family continue in this journey now and forever.

The 9th Blessing of Cancer – Bravery

john wayne

“Courage is being scared to death but saddling up anyway.”

John Wayne

My mom and dad are both big John Wayne fans. My dad loved the heroism of his movies while my mom relished her brush with fame as a young lab technician in a sunny Burbank hospital. She loved to tell the story of John Wayne’s adult son coming in for a blood draw with his father. His son was terrified and wouldn’t sit still long enough for her to take the blood sample. In anticipation of the pain, he cried and writhed and was wholly uncooperative. In not so many words, the Duke told him to man-up and quit his whining.  This rugged man who regularly looked pain in the face with calm swagger was bravery personified. Mom was thrilled.

There is something to be said for regularly looking pain in the face. You build up sort of a resistance, almost an expectation that a certain level of pain is part of life and that the ultimate goal is no longer to avoid it, only manage it. One of the great blessings of getting cancer is that compared to it, most everything else in life is no big deal.

Coming back from vacation, we hit a cow in Nowhere, Arizona at 75 mph. Our brand new Denali was totaled. I was life-flighted to Phoenix while the family made the trek to Kingman to get a rental car and then headed back down to Phoenix to pick me up. I arrived at the hospital and was greeted by a trauma team of 13. They were better than any ER team you’ve seen on TV. Working with precision, they cut off my clothes, started my IV and had my CT scan done within minutes. The doctor swept back into the room announcing that I hadn’t broken or fractured anything and that he’d just signed the discharge papers, which was great. Except that I couldn’t move because of the chest pain, I had no clothes, and Paul and the kids were 5 hours away. The amazing trauma team had disappeared and I lay in darkened silence in the trauma room for the next 3 hours. Eventually I found my cell phone and called the front desk to tell them that I was in one of their trauma rooms and I needed someone to come in and unhook my IV because I couldn’t get them to answer the call button.  With the help from angel strangers (Mormons are amazing!), we had a new rental car, a place to stay, clothes to wear and a ride from the hospital, all at 3:30 am on New Year’s Eve. It was voted the “Strangest Medical Experience Ever,” “Worst Family Vacation” and will be forever known as the “Year of the Cow.” But no one died and in the scheme of things it is no big deal.

The bravery developed through cancer has also made me either more self-confident or completely indifferent to what others think, I’m not sure which. I don’t mean in a “I think I’ll wear a large purple mumu and curlers to the grocery store today” sort of way, or an “I’m going to speak frankly and tell you exactly what is on my mind because I’ve lost my social filter” sort of way, but in a “If I’m meant to go down, I’m going to go down swinging” sort of way. Having cancer has given me a keen sense of bravery.

I do have to say that getting off the medication help significantly in developing more bravado and being in remission really helps. (My quarterly results came back and I am still in remission!! Yeah!)

But I think adversity creates bravery and that it comes in levels, preparing us for the next great thing.  I look back on the last few years and think, “That was hard and we did it. We can do the next thing too.”

The journey to get there included a huge life dip. As a patient, I went from a completely independent and functioning individual to someone who was told what to do, where to be, what medication to take, and for how long – all in the name of saving my life. The life-saving part is worth it, but it does include a significant sense of loss of personal agency for a very long time. After losing both tremendous physical and mental capacity, I have a preview of what it feels like to be 90 years old (and now better understand the “endure to the end” tenant of my faith). It is very easy to feel like an un-empowered victim.

And now, after the dip, it is time to go back to being a better me – more empowered and not in the least intimidated by really, anything. Move to a foreign country? No problem. Learn a new language? Piece of cake. (Paul still thinks I know no Spanish. Don’t tell him that the word for green beans is ejotes. I can remember that now, even though I couldn’t on the Thalidomide). Start a new business? It won’t be the first time. Start a foundation for myeloma patients? Sounds great. Completely change the scientific discovery process to find a cure for myeloma? Let’s do it.

One of the triggers for flipping from a victim back to someone who does help control her own destiny began in the gym. When we moved back from Mexico, Megan and I started using a personal trainer – a lovely girl who knew her stuff and who had also overcome hard things. As we went, I had an increasing feeling of strength, inside and out. It helped restore me to my former, but now better self. As my physical strength returned, so did my resolve that we could help drive major changes in cure discovery.

If you look at the statistics, myeloma has a median survival of 4-6 years. Twenty years ago it was 2-4 years. That’s twenty years of scientific research for an increase of 2 years of life. The drug companies hail it as a “major medical advancement,”  but I want 40 more years of life, not two, so I say it is good but we can do much, much better. My particular type, MAFB has a median survival of 23 months. Younger people tend to live longer, but I fundamentally believe I am supposed to be cured, not die from it or live with it as a chronic disease.

Cancer has given Paul and me the motivation to do something about the problems preventing the discovery of a cure. Patient data is stored in facilities that can’t share it because of HIPPA (or a pervasive fear of getting sued). Talented and caring doctors are measured on papers written, so they limit collaboration with other facilities. Iterative research is the norm, while breakthrough research is seen as professionally risky. The standard research process hasn’t changed in over 50 years and is thorough but SLOW, despite new technology tools available. There are no pools of data large enough and accessed by patients, doctors and researchers that include not only medical data, but patient data like family genetics, lifestyle habits and environmental history, so that we can identify patterns of the outliers – people who are living 15 years and beyond with myeloma. Patients are asked to make life-saving decisions in a vacuum – they have to pick a doctor they trust and go for it.

And so there are problems that need to be solved. We are raising our hands. We will take the risks. We have already emotionally been at a point where we have contemplated losing it all. We don’t mind looking stupid in the effort, if need be.

Blissful ignorance (or understanding) of my own inabilities may just give me the devil-may-care attitude I need to move forward, but step by step I know that we can make a difference.

We are now working on a patient-driven project (CrowdCare) to provide support and information/data to myeloma patients, doctors and researchers. We have talented friends and business associates (thank you Spencer, Gary, Neal and our volunteers) now helping and we are assembling a team to accomplish a mighty change in healthcare, starting with myeloma.

This challenge called life will continue to throw obstacles (or cows) our way. I hope that we don’t make it harder than it needs to be, or as our hero notes, “Life is hard. It’s even harder when you’re stupid.”

We will keep saddling up for the ride.

The 8th Blessing of Cancer – Change

Last month we drove from Mexico City back to the United States. Right before the move, Paul had a dream that he lit the entire contents of the garage on fire. It was a happy dream.

The worst part of moving is looking at a sea of boxed stuff and knowing that someone has to find a place for it all and that someone is you. But the best part of moving is asking yourself, “Why do we have this anyway?’

People assume that we are jumping up and down for joy to be back. I have to say that we feel a bit shell-shocked, sad, and are in denial. After dedicating almost the last 3 years to creating a group of funds in Mexico, coming back was the last thing on our minds.

But cancer was forcing us to make a change. In Mexico, we tried to apply for an international healthcare insurance plan with coverage in both places. We were rejected multiple times, so I traveled back to the US to get treated. Miraculously, we have never needed Mexican insurance in a big way. But this January, our US policy was also cancelled so we are now on Cobra. As you know, Cobra is expensive and temporary. Before it runs out, we have to find new insurance because I will have a 6 month waiting period for pre-existing condtions. No one, it seems, wants to insure a small US employer group when the founder lives in Mexico.

So here we are. We have packed and unpacked a house yet again. The stuff has expanded and then shrunk and continues to shrink. I am finding purging to be very healing (Don’t tell Paul. He may dream about a fire in the garage, but he likes his sock collection).  After living out of a suitcase for the past 2 years, I realize that you really don’t need that much stuff.

Considering the last 3 years, we are back where we started. Everything is the same and yet absolutely nothing is the same. And that’s the beauty of change.

Change is a basic human need and we all want some sort of change, but the kind of change I usually look for is a nice vacation in Playa del Carmen or a new haircut – adventurous, temporary and happy. Change is fine if it is slowly incremental and doesn’t mess up my “regular” life too much.

But change in life is more like “You have cancer,” or “Congratulations, you are in remission!” or “We are canceling your health insurance.” or “Your daughter’s been in an accident,” or “We need to move back to the States.” It is usually largely shocking, sometimes thrilling, and sometimes completely inconvenient and exceptionally hard.

I was baffled about why we were living in a foreign country, starting a new business and having cancer all at the same time. It has been a fabulous adventure and a panic attack all rolled into one. After our first year in Monterrey, I told Paul that it was the hardest year I’d ever had. I never knew what was coming in the next two.

It is only now, after a few years of being under severe pressure, I realize that it has been compressed growth. We have had to dig deep. We have questioned our assumptions. We have been in an environment where people do things completely differently. We have prayed harder than we’ve ever prayed to find answers and inspiration. I’ve cried a lot. Paul has been stressed, but is strong, stellar and can handle absolutely anything with grace. We’ve relied on faith, family and the service of others.  We have asked for divine direction at every turn and have not been disappointed in getting the help we needed.

The outcomes have been painful but I feel completely worth the pain. Why? For me the education has been enormous and overwhelming, but permanent. I have been changed at my core.

Living in another country has made me ask, “Why are these people so happy and gracious?” Living in other people’s homes where the physical order and beauty gave me a deep sense of peace made me ask, “Can we make our living environment as peaceful and pretty?” Being physically incapacitated has given me greater compassion and understanding for physical suffering. Receiving service and the love of others has given me a greater desire to serve others and a deep awareness I’ve never had before.

I’ve always set goals because I believe personal change is a fundamental purpose of life  – that we can be better today than we were yesterday. I love how Benjamin Franklin made a list of desirable traits and tracked his progress every day. We can always choose to change for the better. As someone once put it, “The possibility of change is always there, with its hidden promise of peace, happiness, and a better way of life.”

But no amount of goal-setting could have produced the personal change that has occurred in the last few years.

The change that cancer forced is not something I welcomed, but I am realizing its purpose.

If I had a formula for bypassing trouble, I would not pass it round.  Trouble creates a capacity to handle it.  I don’t embrace trouble; that’s as bad as treating it as an enemy.  But I do say meet it as a friend, for you’ll see a lot of it and had better be on speaking terms with it.  ~Oliver Wendell Holmes

Trouble creates a capacity to handle it. I see that. The changes I feel inside could have taken 20+ years to realize, but have been compressed into 3. Because of the depth of the challenge, it has been a life-altering and unforgettable experience that has expanded our vision and abilities. I am not the same person I was when I started.
The transplants reset more than just my plasma cells. With the exception of my hair, I’m quite happy with the new me.

The Seventh Blessing of Cancer: Greater Gratitude

The saying goes “If you have your health, you have everything.” With my health on hold, cancer is teaching me about the true nature of gratitude.

My life will never be perfect. Logically, I already knew this, but it is so easy to wait to be happy – for the job to take off, the house to be clean, the kids to be more independent, my health to return. If life’s circumstances would just get into alignment with my expectations, then I’d really have something to be grateful for!

Has the selfish nature of this expectation ever been so exposed? Now that I can see it so clearly, I laugh at the ridiculousness of waiting to be happy, for gratitude and happiness come hand in hand.

“A man only begins to be a man when he ceases to whine and revile, and commences to search for the hidden justice which regulates his life. And as he adapts his mind to that regulating factor, he ceases to accuse others as the cause of his condition, and builds himself up in strong and noble thoughts; ceases to kick against circumstances, but begins to use them as aids to his more rapid progress, and as a means of discovering the hidden powers and possibilities within himself.” As a Man Thinketh, James Allen.

It may be human nature to focus on what is lacking, to blame others for present circumstances and to ignore blessings received, but it produces ingratitude, which leads to sorrow and depression.

It strikes me that I cannot simultaneously complain and be grateful. It is impossible. I must pick one or the other at any given moment. I am either grateful or ungrateful, and as a consequence, happy or unhappy.

“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend … when we choose not to focus on what is missing from our lives but are grateful for the abundance that’s present—love, health, family, friends, work, the joys of nature, and personal pursuits that bring us [happiness]—the wasteland of illusion falls away and we experience heaven on earth.” Sarah Ban Breathnach, in John Cook, comp., The Book of Positive Quotations, 2nd ed. (2007), 342.

Being in a health crisis has given me greater awareness of my blessings. I am more grateful for the gift of life and the opportunities for growth it provides. I have greater appreciation for the gifts of nature; of air to breathe and sun to warm. Being away from my husband and children has given me greater appreciation for the amazing people that they are, and for the divine institution of the family. Receiving so much service has made me very aware of the compassion and goodness of the people around me.

Someone said that unexpressed gratitude is like wrapping a gift and never giving it. I am learning to spend more time expressing my gratitude in thank you notes, emails and phone calls. Expressing my gratitude in prayer for all that I have been given has also changed me. When I choose gratitude, I am measurably happier.

Can I actually be grateful for adversity? This may be the true test of my gratitude or lack of it. I know that adversity brings me to my knees, a “remembrance” of all I have been given and humility that the world is not here to cater to my demands. As James Allen stated, it may mean that I grow at a more rapid pace and discover strengths within myself I never knew I had. It may also open doors of opportunity and give me the courage to create something of value for others.

After learning the story of Kathy Giusti, the founder of the Multiple Myeloma Research Foundation, I see how this is possible. When she was diagnosed with multiple myeloma in 1996, there was a 3 year life expectancy with no treatment path and no effective myeloma drugs. She was married with a one-year-old baby. She decided to have another baby and received a bone-strengthener. She and her sister founded the MMRF, now one of the top foundations in the nation. Because of her courage to create a foundation that would bring together research, pharmaceutical companies, care facilities and patients, she propelled the research forward. Today, there is a treatment path and known drugs that have doubled life expectancy. Because she brought multiple groups together, the myeloma drugs are approved 35-40% faster than other drugs. In 2005, she received a bone marrow transplant with her twin sister as a donor. Fifteen years later, she has watched her children grow and is there to raise them. Was she grateful to have myeloma? I can’t say, but I am grateful she had myeloma because she changed my future dramatically.

I may not now understand the hidden blessings that will come as a result of adversity, but I know that they will unfold in time. I suspect they will become more obvious as I decide to look outside myself to the service that I can provide to others.

I understand now why “gratitude is not only the greatest of virtues, but the parent of all others.” Cicero, in A New Dictionary of Quotations on Historical Principles, sel. H. L. Mencken (1942), 491.

Gratitude is the wellspring of happiness, the foundation of humility, the origin of optimism and the source of vision. Because of cancer, I will forever be more grateful.

The Sixth Blessing of Cancer: Greater Strength Through Suffering

After 6 months of treatment, I have finished two stem cell transplants. I am giving myself a sticker that says, “I can do Hard Things.”

Suffering is not a fun word. No one really looks forward to it. Most of us go out of our way trying to avoid it, but suffering is part of the human experience.

I ask myself why suffering is completely necessary. Why does personal growth have to come with such a high price tag? Why can’t my test of character come on a Mexican beach with ceviche, chips and an umbrella smoothie? I’ve been there before, and I LIKED it.

But all of the truly great people who have experienced suffering say the same thing about adversity:

“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.” Helen Keller

In the middle of the suffering, I did not want to hear this. It seems a bit too rah-rah for such a hard moment when I was simply thinking about survival. During the low times, I just want to get through the suffering and be reassured that people love me. Although I know it is true, I don’t want to be told that opposition means growth or that adversity is for your own good. But after some suffering has subsided, I can face the truth. Lying motionless in an infusion room has taught me more than the lying on the beach.

A church leader once said that there are four types of adversity: 1) Adversity created by our poor choices 2) Adversity created by the poor choices of others 3) Adversity that is the “common lot of man” like death and disease, and 4) Adversity that is a personal tutorial for each of us individually.

The last six months started as the “common lot of man” adversity, but has truly become a very personalized set of challenges, growth and instruction. The result has been the receiving of hidden gifts. Suffering for me has produced four outcomes:

First, true suffering broke me down to my foundation. What would I rely on during the hard times? My level of mental, physical, moral and spiritual strength was tested and measured. My beliefs were tested and tried. My foundation was revealed and I clung to it with all my might. My foundation was first my faith. It was steady and sure, even when I wasn’t. My foundation was also a heavy reliance on my family and friends, who gave me great service, support and encouragement.

Second, after the initial shock wore off, suffering required that Paul and I act. Sitting on the beach, it is easy to hypothesize about how I would react to a cancer diagnosis, how I would treat my doctors and nurses, or how much I would really complain, but the infusion room is the Real Deal. There is no more “maybe I would…”, there is only action and choice. “Enduring well” without self-pity was the goal. We chose a treatment plan out of several options: herbal medicine, moderate long-term chemo, or two back-to-back bone marrow transplants. We made decisions to have Paul and the kids go back to Mexico. I agreed to show up every day for treatment. I agreed to more pulls during a bone marrow biopsy in the name of genetic research. Paul moved his office into the house. There were other actions we could take – We could complain about our circumstance, or not, and we could reach a breaking point and break, or not. Suffering required action on our part.

“Action is character,” says F. Scott Fitzgerald. Fortunately or unfortunately, the third outcome was a display of character. Our actions showed what we were made of. While we have tried our best, times of trial always reveal areas where we are already strong, and areas where more work is needed. Strengths and weaknesses are both exposed. I could feel about 5 weaknesses being addressed all at the same time through the same trial –  a crash course of growth. Exposing the Real Me was a barometer of character and the exposure revealed our core thinking about how to live life, but my display of character mattered only if I remembered the fourth outcome: learning.

“The reward of suffering is experience,” says Harry S. Truman. The last and ultimate outcome of suffering for us was to become smarter and wiser, but only if we chose to see it. Anne Morrow Lindbergh wisely said: “I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable” (“Lindbergh Nightmare,” Time, 5 February 1973, 35). Perhaps it is not the process of simply enduring the trial, but in the process of overcoming the trial that we gain the experience. 

I see the value of our suffering. We gained confidence and experience in our decision-making and in our trials. The move of Paul and the kids to Mexico was the right choice. The treatment at Huntsman was the right choice. Moving forward with faith was the right choice. Worry, which was natural, seemed to always be the wrong choice. The simultaneous demands of my health and work pushed us to a level of concern we had never seen before and it forced us to expand our capacity.

My brother-in-law’s severe leukemia and death almost six years ago prepared both Paul and me for what is required today. The highs were high, the lows were low, and the stress was unimaginable. The deep effects linger for his wife and six children, whom we love dearly. The learning for all of us was permanent. The trial prepared us for my cancer. We are calmer, smarter, stronger and more discerning. There are actions we would repeat. There are actions we would avoid. We were forced to mature and so we did, because we had to.

Call me slow, but I can’t learn every lesson the first time around. Supporting David and Tonya through his cancer helped to prepare us. The two back-to-back stem cell transplants were the same, but I learned radically different and important lessons during each transplant.

I don’t like pain and suffering, but I have seen it’s purpose and I am forever changed by it. I hope I am becoming good timber as described in this poem:

Good Timber

The tree that never had to fight

For sun and sky and air and light

But stood out in the open plain

And always got its share of rain,

Never became a forest king

But lived and died a scrubby thing.

The man who never had to toil

To gain and farm his patch of soil,

Who never had to win his share

Of sun and sky and light and air,

Never became a manly man

But lived and died as he began.

Good timber does not grow with ease,

The stronger the wind, the stronger the trees.

Douglas Malloch (or unknown)

The last six months have been painful but productive. Anything I have given up has been generously recompensed to me in greater compassion for the suffering of others, greater gratitude for simple things given to me everyday, greater patience to endure just a little longer, greater appreciation for the love shown, and greater confidence in my ability to do hard things.  I have tested out my foundation and have found it to be secure and dependable. Knowing that the Savior descended below all things gave me an immense sense of comfort and awe for the Atonement.

In hitting severe lows, I have also given myself mental permission to have greater joy in the highs. I want to smile more, sing at the top of my lungs, learn to dance the salsa, eat flourless chocolate cake and empanadas without guilt, meet fascinating people, visit a Mexican beach with ceviche and a smoothie, and embrace every high with greater enthusiasm. Beyond the experiences of self, I have learned how true joy comes – tending to the needs of others.

Our trial has been preparation for the future, personal instruction, and productive growth. There will always be more suffering, but it will make us become better. I have gained strength and will be ready for what is to come.

The Fifth Blessing of Cancer: More Powerful Prayer

The kindest words anyone can say to me are: “We are praying for you.”

Family and friends are praying for me. My name is on temple prayer rolls. A Pentacostal group in Greenville, South Carolina is praying for me. A Presbyterian group in Salt Lake is praying for me. Sharon’s mom’s prayer group in Wisconsin is praying for me. Many Catholic friends in Mexico are praying for me. People I hardly know tell me that they are praying for me.

Being on the receiving end of this many prayers is new for me and it has completely changed the way I view prayer. I am changed mostly by the way I feel physically. When people say, “I am praying for you,” I respond, “I can feel it.” Their prayers are giving me joy, a physical sense of peace, and a comfort I can only describe as a substance. It is not just a feeling, but a physical presence that feels like tangible matter surrounding me. It is a physical display of a spiritual idea. Your prayers support and uplift. They cheer me and comfort me. Prayer works.

I will never pray for other people in the same way again. I now have greater confidence in the tangible reality of the support that is provided through prayer. My increased faith in prayer makes my prayers more fervent when I ask for blessings for others.

Actually, the entire nature of my prayers have changed during these two transplants. Before cancer, it was easy for me to fall into patterns when it comes to prayer – repetition, distraction, or presenting my “wish list.” But building a relationship with my Creator takes serious effort, “Prayer is a form of work,” (Prayer, BD) I am told. Cancer’s blessing is more powerful prayer.

I have two assumptions when I pray. The first is that God loves me and wants me to be happy. The second is that He wants me to grow as much on my own as possible and wants me to use my free will to do the growing. He offers a condition with a promise: “Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: for every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened” (Matthew 7:7-8). The responsibility lies with me to do the asking, seeking and knocking.

With these two assumptions in place, my prayers have changed in three major ways. First, my prayers have changed in intensity. An intense cry for help was my first prayer. Cancer had my attention.We had much to gain or lose by the decisions we were making about my treatment and the kids. The decisions were literally life-changing for every family member. We were at a new level of complexity that warranted a new level of intensity.

The nature of my prayers also changed. Now, they are more conversational. I still use terms of respect like Thee and Thou, but I open my heart and  share everything as I would to a close friend. I describe the situation as a whole; the factors that exist, the possible options, and the decisions we’ve already made. When I am at a loss, I have become very good at saying, “I don’t understand with my limited perspective. Please teach me.”   I am counseling with my Counselor.

Lastly, I have more gratitude in my prayers now than ever before. You would think that I would have more requests than gratitude during a health crisis, but the opposite has been true. I have noticed more about what could have gone wrong but hasn’t. I went through three rounds of chemo during an entire fall season and into the winter without a cold, flu, or sore throat. I have not contracted pnemonia, something that I caught 3 times in the last winter I was in Utah. Our children have thrived, even during a time of great stress. They are doing well and have been safe. Work has progressed steadily and stressfully, but well. I have been very aware and grateful for all of the support and love from family and friends that has made this whole thing possible.

How have my prayers worked so far? Like I said before, I can feel the support from prayer. My prayers have in many ways been answered by the angels around me – the family and friends who have tended to our many needs. When it comes to receiving answers, I have learned much over the last few months. I rarely get answers to prayers in the moment of prayer. It is when I get off my knees and start the seeking process that I will run across a great talk, a song with words that inspire, advice from a friend, or a scripture that gives me my answer. I have learned the most in the last few months by the answers not immediately received. Sometimes I felt like I was praying but not being heard. In some cases, I already had received an answer and I was praying for constant reassurances when in fact I needed to trust in the answer I had already received. “Did I not speak peace to your mind concerning the matter? What greater witness can you have than from God?” (D&C 6:23)

For answers still not yet received, I realized that it was a timing issue when I wanted the answer now. I am working on patience and I am slowly getting better at it. He has a plan that involves more people than just me and I can see His hand in the work happening around me.

While I wait, I will continue to pray.

Thank you to all who have been praying for me. I am eternally grateful for your faith and your love.

I will forever pray for you during your times of struggle and challenge and I know my prayer will be heard and answered .

The Fourth Blessing of Cancer: Being Still

I am about to go back to see my family for almost a month. I can’t wait! Being away from my family has been so strange. I miss them so much, but I have needed time to rest and to heal.

After 15 years of mothering, it is odd to be given such a large block of time right in the middle of my parenting.

I am used to being in motion – fast and constant. Having an entrepreneur husband and six kids accounts for much of the motion, but I have an overachiever personality to boot, and have added activities and projects to my already full plate. My life was full of appointments, schedules, expectations and responsibilities.

Cancer has forced me to drop them all. I would have never set my stewardship down voluntarily. It had to be literally taken out of my hands.

The world of cancer has a different pace. Cancer treatments take time and are unhurried. The treatment process can span months and years. There are times of pain where survival is the only aim. Recoveries are slow. Family and friends help to take over responsibilities that can no longer be handled alone. Priorities that were once paramount shrink to nothing. Outside pressures and expectations diminish. Kind people encourage rest and healing.

So what will I do with all of the time?

I could entertain my way through it, but I have a gut feeling that I won’t learn the lessons I need if I fill the time with diversions. I could take up a new hobby, but that didn’t work out so well either.

One day,  Sharon and I saw some a cute hand-knit scarf in a store. They were a a simple rectangle design with one buttonhole on one side. “This would be easy to make,” we both said. Never mind that neither one of us knew how to knit, nor had I crocheted anything since I was 9.

(Here’s the only photo I can find of the general idea: alexaludeman.com It doesn’t look that hard, does it?)

We tried to find a yarn store and then went home in a moment of strength, telling ourselves we didn’t need a new project. We both had plenty of work (Sharon’s photography) and interests (my reading and writing).

Unfortunately, Sharon found a quaint yarn store and our willpower melted. We ended up buying $80 worth of fine yarn and a pair of knitting needles. Sharon dutifully attended the free knitting class. She knitted and purled at home to practice, but ended up taking most of it out after trying to remember the instructor’s directions. I watched a You Tube lesson to brush up on crochet and then worked on that simple chain stitch, shaking the whole time because of the effects of the transplant. A day later, we saw our mistake and set it aside. We will not be making scarves, now or ever. (Does anyone know how to knit? We have really nice yarn and a pattern!)

As a mother, I know how precious and scarce quiet time really is. Why did I fill this rare resource with extra, unimportant busyness?

In the case of the scarf, I think I allowed my busyness to define me. If I am busy, I feel more competent, talented, valuable or important because I am creating or producing, even though the produced product has little or no end value whatsoever.

This is only one of my many reasons for staying busy. Here are more:

What starts as work towards a noble goal becomes a long list of tasks, with no regular system of measurement in place to see if the goal is actually being achieved.

Sometimes I just want to be “done” so I rush through the motions to get to the end, when there is really no true end, only “enduring to the end.” In the rush, I usually miss the moments that mattered.

Living with scarcity is almost easier than living with prosperity. There are SO many choices. I think I might have nagging regret that in picking something up, I had to put something else down. Choosing my “best” thing means that I will miss out on something interesting, urgent or important.

Cancer brought me to a screeching halt. Stepping out of my daily routine for a long enough time has taught me a thing or two about being busy.

Busyness brings haste. Brigham Young’s message for Utahns in 1872 is  also for me.  “You are all the time on the wing, and in such a hurry that you do not know what to do first.”

Haste destroys inner peace and leaves no time for reflection or contemplation.

Haste fails to prioritize. Everything is urgent and important.

Haste closes our eyes to simple gifts we receive every day. We fail to look up and see the beauty of the ordinary, our noses buried in our long to-do list.

Haste brings impatience, which damages relationships. Eye contact, conversation, listening, courtesy and graciousness are lost in the rush to get to the next thing.

(Sigh.) Cancer has made me tired of being in a hurry. Knowing how rare quiet time will be in my life, I am taking advantage of being still. I have surrounded myself with silence, ready to be taught new lessons. I have visited with friends and enjoyed their company.  I have written letters to my children. I have read good books and listened to music that brings me joy. I have walked through beautiful neighborhoods and driven up canyons just to enjoy the leaves. I have enjoyed time in the hammock in the back yard. Being in nature, especially, has been uplifting and healing.

“The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quite alone with the heavens, nature, and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simple beauty of nature. As long as this exists, and it certainly always will, I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles.” Anne Frank

It was in nature that Thoreau was able to find more white space in his life. “I love a broad margin around my day,” he writes.

Giving your self a broader margin certainly seems easier to do if you are alone in the woods for a year, but Thoreau had the right idea, even for normal family life. Nature plays at a different tempo than we do.

Living differently is possible – I’ve seen people pull it off. My role models are men and women of character and accomplishment. They do not seem to be frantic people in a hurry. They have an unfailing sense of purpose and work steadily every day to accomplish that purpose. They take time to plan and prepare for the day ahead. They pray for divine help and dedicate their efforts to their Creator. They are realistic about how much can be done in one day. They are gracious and thoughtful. They do the best they can, and have faith that it is enough.

Learning to do this for myself will be my next discovery. I am grateful that cancer has helped me see things differently. Living differently will be the ultimate reward.

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.