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.

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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.

A Mother’s Heart

Today I am grateful for women with a mother’s heart. I am grateful for my mother, my step-mother, my mother-in-law and the many women I look to as great examples of the type of mother I hope to become. I look to their kind examples of selfless service, kindness and simple acts of love. I am so grateful to the women with a mother’s heart who have cared for me and our children with such love.

These women with mother hearts are strong in their commitments and are positive and happy. They keep their covenants and are unfailingly consistent. They speak truth and their words resonate with their children and the people around them.

These women know that “There is no greater nor more satisfying reward than that which comes from developing men.” A.A. Stambaugh.

They know that the great work to develop humanity comes in the daily shoe-tying, story-telling, spill-cleaning, homework-helping and meal-making. They know that by simple means great things come to pass.

A memorable talk described these life-giving women:

“Who can find a . . . woman [with a mother heart]? for her price is far above rubies. . . . She . . . worketh willingly with her hands. . . . With the fruit of her hands she planteth a vineyard. . . . She stretcheth out her hand to the poor. . . . Strength and honour are her clothing. . . . She openeth her mouth with wisdom; and in her tongue is the law of kindness. She looketh well to the ways of her household, and eateth not the bread of idleness” (Proverbs 31:10, 13, 16, 20, 25–27).

She educates herself and makes the world around her a better place to be using whatever talents she possesses. Most importantly, she cares deeply about the people around her and about their growth, development and welfare.

The last year has been time for me to take a step back and watch as others tend to our family and to me as well. How much I have learned about mothering from their service! As challenging as it has been to step back and let others take over, I will be forever changed as a mother because of their example. Their actions, driven by their giving hearts, have been those of pure love.

One mother in particular is on my mind today. My mentor and friend Sarah Bertagnole (who is the mother of six and also has myeloma) started her third bone marrow transplant last week. She is now back in Salt Lake City and is receiving an allogenic transplant (a transplant using donor stem cells). She is in the hospital for Mother’s Day and will be in treatment and away from her family for the next four months. Yesterday she said that she knows our children are being watched over and cared for even when we cannot be with them. She is a light and example to me of a caring mother who is adored by her family. She is a woman who is full of faith. We are praying daily for this darling and positive mother and I look forward to seeing her in June and doing what I can to help care for her.

For all women with a mother’s heart, Happy Mother’s Day. For all those in Mexico, enjoy a second Mother’s Day on Tuesday. Your two days of honor are well deserved.

In Remission

Our family came to Utah for Spring Break and for my quarterly testing at Huntsman. I did another bone marrow biopsy and lab work with an MRI thrown in last week. I met with my Utah doctor yesterday and my numbers are showing that I am in remission! Hurrah!

This is great news and we are thrilled.  My Huntsman doctor says that he has gotten over a third of his patients in remission for 8-10 years doing the double transplants. He is waiting on further data to come back, but he believes that this number will move up to 0ver 44% when it does.

There is some debate about multiple myeloma treatments in the MM community. Some doctors favor the double transplants with 3 follow up drug combinations following the transplants. The double transplants are the protocol norm in Europe. Some doctors favor a single transplant with the same three basic drugs. Some doctors favor just using the three drugs without a transplant. This debate can be very confusing for patients. It seems that the problem in determining the most effective treatment is being able to follow the patient for more than 2-3 years. As I understand it, it is rare for doctors to have data for their patients beyond this point. The key question seems to be: How long have you followed your patients?

To really see which treatment is most effective, you need to follow them for 10+ years, not just 2 or 3. The effective myeloma drugs (which came out 8-10 years ago) can alone keep myeloma patients alive for 2-3 years. It is more important to know if a patient relapsed, had to come in for another transplant (or a third) and what the long-term treatment was to keep them alive. My Utah doctor says, “Show me the data.”

I was also happy to learn more about my genomic testing. There are 7 different types of multiple myeloma, all with a different gene mess-up. Mine is the MAFB 14-20 gene, which means that part of the 14 chromosome is stuck to the 20 chromosome and part of the 20 chromosome is stuck to the 14 chromosome. The newer MM treatments are headed to be more personalized, depending on which gene problem you have, so it is good to have this information.

We are happy to be in Utah, happy to have great news about my treatment, and happy to be together!

Happy People

I am getting used to my new routine – from Monterrey to Texas and back every other week. I am so lucky to have friends who have offered to have me stay with them. Todd and Lisa are gracious hosts with a beautiful home and darling girls. They are kind and funny. They are a joy to be around. They are happy people.

My sweet sisters have also come out to be with me in Houston. They are also happy people and have made my time in Houston more fun. We have explored Old Spring, found the Mockingbird Bistro and Escalantes, driven neighborhoods and even gotten a pedicure.

Sondra

My life is filled with happy people. My husband is a happy person, even when he is under stress. Starting a pioneering international venture fund at the same time his wife has had cancer has been quite the family adventure.  Last June, I commented that our first year in Mexico was our hardest year ever. Little did I know what was coming in August or December!

We are working to get the fund settled now that it is closed (congrats to the AVM team – 60M in January!) so we can add a bit more predictability to our life. I am two months into the travel routine and am getting better at coming and going. The 3-year-old is still a bit confused and keeps asking “Are you coming back?” It is a logical question for him after having me gone for 6 months during the transplants. Really, it has been plain hard on everyone.

Over the last two months, I have been frozen by my to-and-fro treatments and the stress of the startup. But you can only be paralyzed for so long before you have to do something else. Being a victim is really not sustainable living. I tried it, I really did. But the anxiety didn’t really get me anywhere. And so I am consciously making the transition from being a victim to someone who is empowered.

Happy people have a secret. They look at the world in terms of what must be done to change it and they use their agency to change the environment around them. Some happy people have taken charge of their healthcare – educating themselves on their disease and tracking their results. Some happy people look around to see how they can serve others – how they can make someone else’s day just a little better. Some happy people never accept a status quo – there is work to be done to change their world. There is a theme here – choice and then action. We get happy in the doing.

Knowing that you should do these things to make yourself happy is very different than doing the things that will bring you joy. As Stephen Covey says, “To know and not to do is not to know.”

If you want to be really depressed, tell yourself that you can’t change anything, watch some TV, be resigned to the way the world is. Do everything you can to be passive. It is a sure-fire recipe for sadness.

For me, it is time for the something else. I can exercise a little every day because I need the endorphins. I can tend to the 6 kids, my husband and my friends with cancer that need attention. I can continue my research to ultimately change the way healthcare works. There are plans and decisions to make to provide a sustainable way to live. For all that I can’t do, I blame the dexamethasone. But there is so much that I can.

What Matters Most

I met my new doctor this Wednesday at MD Anderson and we had a great meeting. He is a top doctor in the field of myeloma and it is always enlightening to learn more about the latest and greatest in research and clinical trials.

At the airport later in the day, the impact of what he actually said hit me. I realized that his message was in no way comforting, just a reminder of reality. I burst into tears. He said that even if I get into remission, myeloma is not one of those cancers that if you don’t have signs of it after two years, you are clear. Myeloma always comes back eventually. And there is no cure. He is a doctor, researcher and scientist. Given the statistics and his experience, they were realistic comments. My Utah doctor phrases things differently. He says, “One-third of our patients can get into remission for up to 8-10 years.” Still realistic, but said in a glass-a-third-full sort of way.

I moved out of the Bentleys after living there for 7 months, came to Mexico, went back to Utah for more test, came back to Mexico again and have now gone to Houston to start the new year’s worth of treatments. I will be spending significant time in Houston getting the treatments, flying back and forth between Mexico and Texas. Is it any wonder that I am in a state of emotional flux?

When I am home, I am struggling to find my place again. I have free time, but as the doctor reminded me, my time is potentially limited. So with all that to think about, what should I be doing? What do I want to be doing? What matters the most? I am watching while Paul is working furiously to close his Mexico venture fund, writing a book about the entrepreneurial process, and fundraising for his Mexico City private equity fund. He is going 100 miles an hour while I am contemplating my life’s purpose on earth. It seems unnatural to be just laying there, sharing in the emotional stress of a startup, but not being in a position to help out too much.

Actually, I find that the cyclone of the startup and the stillness of my cancer have surprisingly a lot in common. They both ask the question, “What is worth my time and energy?”

I just read Paul and Nathan’s Nail It Then Scale It book again before it went to print. The main idea for entrepreneurs is to cycle through business ideas quickly without spending years and millions building a business that won’t ever make it. The idea is to fail fast and fail early, saving time, money, reputation (and may I add relationships). The process takes humility and discipline, but the reward is worth the effort.

Life is like that. We accept or reject ideas about how to spend our time, trying to avoid the crash-and-burn ending. The process takes humility and discipline, but the eternal reward is definitely worth the effort.

My brother-in-law who interviewed for a new job is contemplating the same question with two different approaches: Is there something I should be doing – a sort of pre-ordained destiny that I was meant to fulfill and a work that only I can do? Or should I simply decide on what that good thing is and then set about achieving it?

The scriptures are full of people who were called to do a specific work – Samuel was chosen to be a prophet when he was just a boy and Moses was called to lead the children of Israel out of Egypt. The disciples were chosen by Christ and “left their nets straight away.” Most of them said, ‘Who, me? Really? But I am just an ordinary man.” They were all asked to do unbelievably hard things, but at least they knew they had God’s endorsement and power to accomplish anything He asked them to do.

I guess the key point is that they were called by their Creator to do a specific work that He qualified them to do. Most of us aren’t commanded to appear before a burning bush, only invited to do His work, counseled to obey the commandments and then are left to our own judgments about how we spend our time.  I do think that I came to earth at a specific time in history and that I have a place to be and a work to do. I also believe that I will have to account for the work I did here. But if we were all told exactly what to do every minute we were here, it would be too easy. We would not have to sift and sort, prioritize, choose or reject the many offerings in front of us. We would also not have to assess our own talents, strengths, weaknesses, willingness to take risks, or decide on the best venue for our talents. We could blame God for our predicaments, (“Well you told me to go do this!”) even if the work was done with less-than-perfect execution or seriously flawed judgment.

(And maybe this is why those rarely chosen were uniquely qualified with a special blend of timing, opportunity, character, faith, obedience, and confidence in God)

I guess these thoughts just bring me back to the question, “What matters most?” Whether I have 3 years left or more than 30, cancer has forced me to prioritize. I keep coming back to the same 3 things: Doing God’s work and living righteously so I can stand before Him at the end of my life with confidence and joy, caring for my family and those eternal relationships, and gaining knowledge – all three being things that matter now and forever.

On the flight to Texas, I sat next to a man who was a testicular cancer survivor. He had been cancer-free for 16 years. I asked him what he learned by having cancer. His answer was, “Today. Live for today. Love the people in your life today. You never know how many tomorrows you will have. Most people live in their future – when I do this or when that happens, then I’ll have really done something. They completely forget about enjoying today.”

I guess what matters most is finding a way to make faith, family and learning part of our todays. That way we will have lived enough, loved enough and learned enough, regardless of when we are called to go.