Bonus Blessing: Turning Faith into Knowledge, “You’ve Got to Bring It”

studioc
I set out to find ten blessings of cancer and I’ve now reached the ten. I just wanted to share some of the spillover with a bonus blessing: turning faith into knowledge.

I attended a myeloma conference and a patient named Michael Katz was presenting his recommendations from a patient’s perspective. One of his PowerPoint slides said “It’s not a bad time to get religion.” He is a faithful Jewish man and he is spot on.

Contemplating your mortality is not a bad time to get religion. Struggling with survival is not a bad time to look up and ask for help and much-needed direction. I’ll explain more about “bringing it” later in this post, but an added blessing of cancer is turning faith into knowledge.

In my faith, we have a once-a-month Sunday meeting called “Fast Sunday.” We fast for two meals, donate the money we would have spent on the meals to the poor, and at our meeting we offer testimony about certain gospel principles and sometimes share our faith-building experiences.

As a 13-year-old I remember wondering how someone could say they “knew” something was true versus “believing” something was true. But as a 13-year-old, I hadn’t had much time to exercise my faith.

I’m learning (through some exhaustion) that the word “exercise” here is pretty instrumental. I’ve been watching my kids try out P90X and it looks exhausting. Then I watched this hilarious spoof on P90X from BYU’s new Studio C comedy show and I heard words of wisdom “You’ve got to bring it, every day.”


I’ve started running (ok just a little!) and surprisingly have to breathe hard while doing it (ha ha). Also shockingly, after 30 minutes in the gym, I can “feel the burn.”

I’m learning that the whole purpose of faith is to “bring it.” You start with  a hypothesis given from above and then exercise that faith by actually doing something about it. In time, you prove that hypothesis and it becomes factually and personally true. It might take years and consistent choices to prove it out, but it does happen.

After many experiences with prayer, I can now say with great confidence that I know prayer works. I am praying to be able to find a cure for multiple myeloma. Who am I to be asking that question with hundreds of cancer experts working on this target? No one of significance or qualification, really. But I believe the promise that He knows all and can make “weak things strong.” And so I pray everyday for direction on this project. The help I’ve received in answer to those prayers has been real and specific. I am getting ideas that I know are not my own because frankly, I am not that smart. I am having doors open that would not otherwise open. I don’t have faith anymore that prayer works, I know that it does.

It’s funny how prayer is answered. Sometimes the ways are totally unexpected.

Sometimes we may ask God for success, and He gives us physical and mental stamina. We might plead for prosperity, and we receive enlarged perspective and increased patience, or we petition for growth and are blessed with the gift of grace. He may bestow upon us conviction and confidence as we strive to achieve worthy goals. And when we plead for relief from physical, mental, and spiritual difficulties, He may increase our resolve and resilience.

 Elder David Bednar

In my best way, I am trying to do the spiritual conditioning necessary and the work required to move the ball forward. The last 4 months launching this project was extreme effort to do something completely out of my realm. You should never underestimate fear as a great motivator to push you to do things you never thought you could. I’m moving past the anxiety stage and am now seeing an extraordinary payoff. My daily spiritual workout is strengthening my core and the education is remarkable.

I’ll take as many bonus blessings as I can get and I’ll keep looking up for more.

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.

Medicine in Mexico

I ventured out a couple of weeks ago to do something I have tried to avoid for the last year and a half – navigate cancer treatment in Mexico. It was a day of bravery (one of many in Mexico, might I add).

While the Spanish is clicking a bit more nowadays for me and I can capture the gist of the conversation for the most part, learning how to say, “Where can I get my port flushed?” and “Do your labs check my kappa/lambda ration?” is a bit trickier. My usual blank stare, “No entiendo” and “Por favor, mas despacio” were not going to cut it.

For treatment I need two things – to get my port flushed and lab work done on a regular basis so that I can track my results. I will be going back for quarterly tests to the states, but I need to see if my numbers are changing at all.

In Mexico, they have labs they aren’t in a hospital or a clinic and I thought it would be efficient to drop in and get results. I showed them a list of lab tests that I needed and asked for a price (You should ALWAYS ask for a price before any service in Mexico). I’m so glad that I did.  It was a shocking $11,000 pesos (about $850 USD). We don’t have health insurance in Mexico, so no way was I going to do that on a regular basis. It’s cheaper to fly to Houston.

A very kind man at the lab could tell that I was struggling with the language. He recommended that I try a doctor at the ABC hospital, which has a cancer center. Because there was little traffic (you have to take advantage of this when the moment hits), we decided to head over and try our luck there. Without an appointment, I was able to meet with one of the oncologists there at the ABC hospital. It was a very nice, new facility and everyone is very kind, gracious and competent.

Truly, people who are from Mexico would prefer receiving all of their healthcare from the doctors and nurses here as they say the bedside manner is more kind, patient and attentive. This is very true. The service is very personal, kind and less rushed. But because of the way that healthcare is administered here, it is a greater challenge to find “specialists” like you do in the states.

Of course they have pediatricians, dermatologists, and those types of specialities, but if you are looking for a myeloma specialist or have a lesser known disease, you have to do a bit more work. If you are a wealthy Mexican, you travel to see specialists in the states if you cannot find the doctors that you need here. Because the doctors get paid per visit, they do not have the luxury of limiting themselves to a small number of patients with highly specialized types of cancers. The oncologists treat everyone, so this doctor was one of 10 oncologists and personally treated 20 myeloma patients out of a total of about 200 myeloma patients at his facility.

In comparison, MD Anderson has about 600 new myeloma patients per year and the Huntsman program had built up their program to about 600 myeloma patients in total. The protocols in Mexico sounded about the same, so they do, in general, have the same treatment methods, but I want more specializing for my care.

He said that the medicines to treat myeloma are very pricey in Mexico. He mentioned that Thalidomide is pretty inexpensive here, but that Revlamid is about $10k per month. My Velcade costs monthly were about $30k per month, either in the US or in Monterrey. Without some kind of international insurance, it wasn’t do-able to be treated in Mexico.

At MD Anderson, I’ve seen people from all over the world who have traveled to the facility to receive cancer treatment. They even have an entire floor dedicated to patients from the Middle East because of the money paid or donated. Even inside of the US, the myeloma patients I know travel far distances both to MD and to Huntsman to get treated.

Because people both inside and outside of the US have this challenge, Paul and I have thought a lot about what will make a difference in curing cancers and other diseases – to offer the “best” care anywhere in the world. What could give this Mexican oncologist the same access to the research, data and latest advances in myeloma? How can his patients get the same kind of care as I can in Utah or Texas?

We started thinking about this 7 years ago when Paul’s brother David died from AML.  From a patient perspective, trying to navigate cancer treatment, best possibilities and finding cures under duress is truly unnerving. When the staff from the 3rd floor wasn’t communicating with the staff from the 4th floor, we knew there were big impediments not just to progress, but to survival.

Obviously, we’ve learned more in the last 2 years. We have a better picture of both the talents, intelligence and compassion of the people working to make a difference and the challenges, bottlenecks and barriers that are preventing cures. As outside observers to the field of medical advancement, we see smart, capable people with silos of data trapped in a really bad organizational behavior model.

In part, we think the answer lies in bringing a patient’s data together – diagnosis, tests, family history information, lab results, diet, exercise, and all other data. Only then can doctors, researchers and patients start to see patterns across a specific patient base and begin to match up research and treatments with personalized cures.

To give you an example, there are 7 types of multiple myeloma, but there are a combination of about 3-4 drugs/chemo that are used by everyone (Dexamethasone, Revlamid and Velcade or next-generation of these). Some doctors do the drugs first and the transplant later. Some doctors recommend one transplant and then the drugs. Other doctors recommend two transplants and then the drugs (this is what I chose). When the myeloma recurs, the therapies get repeated or modified depending on what happens. I was tested to identify my specific type of myeloma (which took 6 months to identify), but right now, having this information won’t allow me to be treated any differently than other myeloma patients.

In the last 20 years of myeloma research, the life expectancy for myeloma patients has gone from 2-4 years to 4-6 years. Progress? Sure, but not enough for people who want to live for the next 30 years. I believe we can speed up the progress.

What if you could see (worldwide) the type of myeloma that you had and could match it against what was most effective with other patients with the same type? What if researchers worldwide had access to the same data without respect to their location? What if diet had an impact? Myeloma doesn’t seem to be genetic, but what if there were indicators because you could see genetic data across multiple generations within a patient pool?

There is more to do. I have a friend who has had cancer come back three times and says that she can’t quite get to the point where she says that she is thankful for cancer. I get it.  Adversity is painful. She has had a masectomy, received radiation, chemo, lost her hair and had part of her lung removed. She also lived in Monterrey and has flown back and forth between Dallas and Mexico for treatment. It is exhausting and emotionally draining, but her example and positive attitude has been stunning (and she can beat me in a footrace any day of the week).

It has not been easy, but I do say now that because of our experiences, we are informed and motivated enough to do something about it.  Our scope is wider and our view is international. And now our work begins.

Peace and Joy

I grew up in a time of big hair and bright green eyeshadow. Somehow I am living in the past. Last night my very curly, post-chemo afro hair was sticking straight up and the kids were making fun of it. I said “At least I HAVE hair!” Neal (4) grabbed my face and said, “At least you still have the same FACE!”

Ah yes. Let’s be grateful for the same face.

2011 is over and good riddance. I am thrilled for the new year and am wishing you all peace and joy in 2012. Last year I traveled back and forth every other week for chemo treatment and was completely unable to write for lots of reasons, medication being one. Let’s just say you didn’t want to hear from me!

This year is one more year of treatment, but no more chemo. I am back with the kids and we are all the better for it. Last night, the kids took a very long bath and then snuggled with me in bed together after the pajamas were on. Neal was right next to me and kept kissing and hugging me, probably 20 times over. He sighed and said, “This is what I like.”

Me too, Neal. This is what I like – being able to put my kids to bed and have them fall asleep by my side.

Last year we felt like vagabonds. Blessed vagabonds, but wanderers nonetheless. Thanks to Todd and Lisa, I had a home in Houston during treatments. Thanks to Geoff, Folleen and Dale, we had places in Montana and Utah for the summer. Thanks to Dad and Tamara, Cesia and Angel, the kids survived it all in Mexico.

We weathered the chemo, side-effects, a move to a new city in a foreign country, the death of Paul’s father, a growing business, a grenade thrown in front of our house, lots of uncertainty and forced adaptation. Truly we were stretched.

I am still in remission, which is happy, happy news and we are excited to open a new chapter for 2012.

Our Latest

It’s been a long time since I’ve written. Is it possible that we are already into October?

I can’t believe that time moves so quickly. After my transplants we came back to Monterrey from January until June and then spent much of the summer in Utah so that I could get treatment without having to travel. Paul did travel back and forth for work and has stayed very busy building his Alta Ventures Fund. We did my quarterly tests there in both April and July. In April the doctor said that I was in remission and the July tests confirmed that this is still the case, which is great news! My October results come back on Monday and we are thinking it is more good news. I will let you know.

In August, we moved to Mexico City which we are enjoying very much. It is a way for Paul to work with the Alta Group of funds and get closer to a Mexico City treatment option. The people in Monterrey were very kind as are the people in Mexico City. We truly love the people in Mexico.

Paul and Nathan Furr launched a book that came out this summer called Nail It then Scale It. 

It is the process that entrepreneurs can take to build a business and avoid pain, delays and spending too much money. The feedback they are getting on the book is truly exceptional. Entrepreneurs have come back to tell them that they have build their whole business around the NISI model and are now executing their businesses to great success. Paul has spoken on the book now several times and has offered webinars in English and Spanish. Yes, he’s been busy. It has been particularly helpful in creating a common language and process for both his entrepreneurs and his investors. You can buy it on Amazon if you’d like.

http://www.amazon.com/Nail-then-Scale-Entrepreneurs-Breakthrough/dp/0983723605/ref=sr_1_1?ie=UTF8&qid=1318656815&sr=8-1

The kids are adjusting well into their new school and have very fun after school activities. Church and the people in the ward are great and we are happily in an English speaking ward. Mexico City is definitely a switch from Monterrey of a completely different kind, but we did not have the culture shock, so the transition has been quite peaceful. I am on an organizing kick, so we are organizing everything from the bottom up – the only thing you ever really do completely when you move homes. It is always good to have a fresh start.

We are happy and healthy and haven’t had time yet to see the city yet. We are still working through daily logistics, school, travel and other such things. We will get there someday to see the sights and really get to enjoy being in a new, adventurous place. We love you all and hope you are all well.

I am still looking for an apple/pina empanada place that rivals Angelly’s bakery in Monterrey but haven’t found one yet.

With all of the travel, Tamara is our life saver and keeps everyone moving in the right direction. The kids are enjoying their new friends, their new environment and their new school. Clark is learning Swedish and the proper way of speaking British (and even speaks in a British accent in his sleep) because he does not want  to learn Spanish, but that too will come. The kids have wonderful teachers and fun after-school activities. Megan is enjoying her horsebackriding lessons which are close to the house. 

The kids are amazing and willing to have new experiences. We are trying to enjoy the journey, even in the midst of uncertainty and change. It is certainly an adventure that none of us will forget.

Thank you for your prayers and support for our family. I know that it has literally picked us up and carried us through some difficult times. For now, we are happy and working hard.

Tug of War

A friend in Mexico says that cancer is like a tug-of-war between those in this life and those in the next.

My friend Sarah Bertagnole is now on the other side. She was my friend and mentor – I have written about her several times before. I was able to talk with her a couple of days before she passed away and she was in good spirits. She felt very good about the treatment that she was getting, but her transplants had not been effective at keeping the myeloma away and the medications she was on did not either.

She is truly an amazing person and the wife to Nathan and mother to 6 wonderful children. I had the opportunity to attend her funeral in Wyoming last month. What struck me the most was the giving and helpful nature of her entire family – Nathan, her children and the extended family. Nathan called me to let me know the news, which was surprising that he had the presence of mind to do that with all of the details that he had to work through. When I arrived, everyone wanted to know if I needed something! A glass of water, a plate of food, a place to stay. What an amazing family and what an example to me of graciousness in times of trial.

Sarah taught her children well. She cared for them, fed them and loved them. You could tell that this was a remarkable family that always strove to look outside themselves and serve others. It had become part of their nature.

Sarah was outgoing, funny, and kind. The reality of the situation was always present, but she had a positive outlook always. She was full of hope and was always trying to lift up others around her.

I will miss my dear friend. I pray for her family and know that they will be blessed as only they can be by a wife and mother looking down on them smiling.