Ana and Isa’s blog

Dear Friends,
I would like to send you all a sincere wish for a Merry Christmas today. I hope you are among friends and family and enjoying time together- what it’s all about. Most of all I hope you are in good health.

Andrew, Isa, Rupie and I arrived in Los Angeles on Sunday night, to be with my parents for the holidays. My brother, Ryuta, and his new girlfriend joined so once again we rejoiced in all being together. It has been one year since I visited my parent’s home, since the past year made it hard to travel. It’s great to be home.

As the usual Stenzel tradition goes, we eat well, and then go for a walk. As Isa and Ryuta started to jog (walking is never good enough), I was tempted too and started jogging. Unfortunately, within a few steps I twisted my foot on some twigs and sprained my ankle. So now I am hobbling about, unable to leave the house because we have not been able to find an open pharmacy to buy crutches. I chuckle, realizing that a sprained ankle is actually a privilege especially when it’s the result of jogging! And mobility is something most of us take for granted until it’s impaired.
We look forward to two weeks in Los Angeles, visiting friends, hosting a fundraiser for Andrew’s dad who is running for US Congress, enjoying to watch Isa in the upcoming Rose Parade, and having a book signing event in my hometown of Pacific Palisades on Jan.3.
I hope you enjoy the last week of 2007. Thank you again for making this a year surrounded by love and friendship for us.

Best wishes . Merry Christmas to all… and to all a good night .

ANA Stenzel

Dear Friends,
I hope this entry finds you all healthy, joyful and eager to celebrate Christmas and New Year’s with your family and friends. Ana and I would like to sincerely thank each and every one of you for your immense love and friendship this last year. This Christmas we do not share material gifts but rather reflect in the immaterial and priceless gifts that we have reaped through all of your support. Today is Winter Solstice, yet in the darkest day the nearly full moon shines brightly just as your spirit lifted us both up during the darkest days of the past year. You are all in our hearts these holidays as we rejoice in knowing you and feeling your love uplift us in the best and worst of times.

Today, we celebrated the beginning of our holidays with a crisp 6 mile hike with our dear friend Tom (double lung 1.5 years ago) and his uncle Dick. We roamed the redwood forest of the Santa Cruz mountains, crossed creeks, slipped in mud, climbed up and down dirt ravines, got lost, and hiked up a long steep fireroad. At the very top, Ana exclaimed, “Okay. I’m back in business!” Hallelujah! With the magical gift of new lungs, Ana was breathing just fine up those steeper hills, only complaining profusely about her poor-fitting shoes. We hiked for 5 hours, and in classic Stenzel fashion, arrived at the car in the darkness. But the nightmare of the past spring and early summer seem like a distant memory, and we are all hiking together as if nothing has happened this year. Praise God for this two-time resurrection! As we hiked, we dreamed of planning other trips: Mt. Tam, Skyline to the Sea, Cloud’s Rest… and so many more. It feels so great to dream! Even if there are rough roads ahead, or these dreams are never realized, just being in the moment of believing all of this is possible is just as good as those dreams being realized! Oh, to just believe in the possibility of so much! It feels fabulous. We have even started to set goals. Before we wanted to reach 40. Now, with our 36th birthday just 2 weeks away, that’s just around the corner. So my new goal is 50. Ana’s new goal is to live just as long with CF lungs as with transplanted lungs. Yes, it’s a bit far-fetched, but it’s a goal nonetheless, to keep striving for and, well, so far, many of our goals have certainly come true!

This week has been the kind the universe sends me that makes me respond by yelling, “Okay, okay! I’m alive!” I started my Sunday by going to church where the message was about living in JOY. I think I do that. Then Andrew and I went to a beautiful opera concert by our local Opera Bravura group. Some of the songs- my favorites Pie Jesu and Ave Maria- were so beautiful they transported me to another place, as I imagined the angels singing in between worlds. I celebrated human creativity! We were all created, and we all have a drive to create by giving something back of our own making to the world. I salute musicians, artists, writers- all those who give us only what they can give, and no one else. Right after the opera, Andrew and I reveled in the creative powers of none other than the fabulous VAN HALEN!!!!! Talk about extremes: we rocked the night away and it was so loud I thought I’d explode! I saluted 16 year Wolfgang Van Halen and 55 year old David Lee Roth, proving that creative talent can be shared at any age! I loved watching Andrew sing away, in his element, re-living his glory days of adolescence.

Other than concerts, Ana and I have continued to enjoy wonderful friends, including my dearest Grace, Paty, Lara, Pat, our Dem friends and others whom we’ve enjoyed online and by phone. I am busy preparing for my debut on the Donate Life Float in the Rose Parade on January 1, 2008 (watch around 8:30-8:40am PST). Today I had a TV interview for this and the segment will probably be shown around New Year’s, on Bay Area KTVU Fox Channel 2. We continue to plan more publicity related to our book. We have a radio interview planned for January 2 with Dr. Alvin Jones (http://www.dralvinjones.com), and we are humbled with these opportunities. I am grateful to Andrew for tracking our amazon.com book sales like a fiend… they are selling like hotcakes! We have another book signing in Seattle in March! We are pleased our next reprint of 1500 more books will be available shortly! We trust in the higher purpose of this book and know that everything that is happening is because of some magical reason we don’t fully understand. It’s not about us.

As I prepare for Christmas I confess my melancholy about those who are missing this holiday. Seventeen years ago yesterday was our friend Karen’s funeral. Yesterday was another transplant friend’s funeral. Charlie (who didn’t get his transplant) is missing this year, as are so many others. I ache every time I hear the words to the Christmas song, “Through the years we’ll always be together”, because I know this is just not true. It is cruel to force the cheer of this holiday on those who are longing for the presence of their loved ones. On our door is a gorgeous wreath made by our friend Hayley’s mother. This is the 9th Christmas that Hayley has been gone. The wreath is a precious reminder of her presence this season in our home. I could have easily been a bereaved twin, if it weren’t for Ana’s altruistic organ donor. I feel for her donor family this season.

I close this entry by wishing you and your loved ones health, joy, love, and continued blessings til the end of 2007 and all the rest of the next year.

Know that we love you deeply,

Isa

Dear Friends,
Thank you for your support of our book and our blog! A week has passed since our busy book signings, and Ana and I continue to revel in the joy of being knee deep in book matters. We are so grateful for kind words, enthusiastic reviews, and many more emails than what we can respond to about our book activities. We appreciate people who are keeping their eyes and ears open for special opportunities for this story. Ana and I volunteered for CTDN this week, which was wonderful. We have also been busy with Heroes of Hope, Rose Parade preparations, doctor’s visits, planning a political fundraiser for Larry Byrnes, baby showers… Life goes on. Just in this week, our friends have graduated, had babies, and experienced other life changes. How grateful we have the energy to be part of the activity around us.

The greatest event this week was going to the track with Ana and our dear friend Lara (double lung transplant 1.5 years ago). We practiced 100m sprints! What a celebration to see Ana run! And to see Lara beat both of us (despite having her muscles give way on her 2nd sprint- we had to all laugh at how our minds and lungs are sometimes stronger than our muscles!). Well, we are already practicing for 4 x 100m women’s relay run at the 2008 Transplant Games in Pittsburg on July 11-18, 2008! Needless to say, we were all extremely sore and I could hardly get up and down from a chair for a few days. I sure have some muscle-building to do!

It is countdown time for the holidays, which just adds to our busy-ness. I put the germ free fake Christmas tree up and covered it with ornaments we’ve collected from our travels. I went to a fabulous concert featuring Ed Kinney, and attended my first holiday party with my pipers, and baked 4 dozen cookies for that. Tomorrow we attend 2 more holiday parties. My parents visited briefly and we had a meal together, and took a family portrait together. How wonderful to still be a family of 5 (plus Andrew!), which would never have been the case without her 2nd lung transplant. We have so much to celebrate- my parents’ 40th, our book, Ana’s transplant, Andrew’s and my upcoming 10 year anniversary, and so much more. I can’t believe I’m growing old with Andrew.

Our book has almost sold out the first print run and another run is planned! This is so exciting for us! Thank you for all your support and love.

I wish you all some calmness and relaxation at least a few minutes a day. I need to heed this advice. So now, I stop, take a deep slow breath, exhale, and say ahhhhhhh.
Stay warm and feel our love for you as you read this.
Best wishes, Isa

Dear friends,

Thank you for keeping posted about our book signings. Last night was a dark and stormy night, but still a very dedicated group of friends attended our book signing at the awkwardly-located Stanford Bookstore.  Oh, how many times I remember between 1990-1994 being breathless walking up the store with my arms full of textbooks!  Who would have imagined that we’d be here, breathing easily, in 2007, signing our books! We were nearly out of seats, with over 50 in attendance! I truly appreciate many of you who came. Again through the faces in the audience I had a glimpse of my past: my Stanford taiko friend, friends from the Disability Resource Center, my freshman dormmate, my favorite professor, Andrew’s political and work friends, and representatives from various student associations.  What a blessing to be remembered after all these years! I loved to see my ‘repeat offenders’- those who have already come to a signing, and just came again to hear us speak and buy more books! Ana was thrilled to see practically the entire genetic counseling department!!! The greatest gift was the arrival of Catherine C., the Director of the state newborn screening for CF, who came all the way from Sacramento with her colleagues to truly support our efforts with her smiles and enthusiasm.  Ana’s genetics connections shined!

We were thrilled to sell 67 books despite the fact that Stanford Bookstore only had 20 in stock! Thankfully with emergency overnight delivery, we brought ample supply- learned from Tuesday night! Each of these opportunities offers a chance to learn about ways to improve our approach.

Now that this busy week is over, we can take a deep breathe and sigh with some relief. Ahhh! But right now, I started to plan our next events. Talk about shameless self-promotion. That is the nature of the beast.  If any of you have ideas for book signings, please let me know!

We actually needed respite from book talk and book thought so Ana and I went on a 7 mile hike (1900′ incline), the last hour in the dark… What an incredible unreal experience!

With the holidays approaching, I do want to slow down and reflect on our gifts this year. This frenzy is part of them, and having the energy to do all of this book publicity has been the greatest gift of all.

Today, I was practicing my bagpipes in the local park, playing Amazing Grace in the icy wind. (I have a final concert at Broadmoor Presbyterian Church (Daly City) at 3pm on Saturday 12/8.)  An old frail man passed me, stopped, and said “Not yet. Don’t need that now. Not underground yet.” Ha! He had no idea how much I could relate to his words!

Our publisher reported that we’ve sold 1134 books so far. Today is the one month mark of it’s release! Hooray and thank you goes to YOU for your support! I hope for a second printing and third and fourth…. etc. Might as well dream!

Now for the big news, discovered this evening: We are in PEOPLE Magazine! The December 17 issue (exactly 17 years after Karen’s death … read the book) with the perfect babe Jennifer Love Hewitt in a bikini, which doesn’t hurt! Of the thousands of books released this month, it is such an honor to receive a three-star review!!! I was pleased with the wording, not too melodramatic or cheesy. 

Have a wonderful holiday, everyone. Thank you for your ongoing support and blessings. Take care, Isa

Dear friends,

I just wanted to thank everyone who attended our very first bookstore book signing event at Books, Inc. in Mountain View. How can I possibly share how you made us feel tonight?

I left the evening with a grand Oh my God, Oh my God feeling!!! The event was a great success thanks to the support of nearly 100 friends from all parts of our lives!! There was standing room only, and to my great disappointment, the bookstore sold out of books before we even began speaking at 7:30! We are very sorry for the poor planning. I am sure people were disappointed if they went home empty-handed, after coming all the way in the rain, some from as far as San Francisco, others following a long day at work, and some even coming straight from the airport! 

I think back to my prophesy before my transplant (see Chapter 33: The Miracle), when I kept saying over and over “There’s going to be a miracle.” Well, my friends, my transplant was one big miracle, Ana standing next to me tonight looking so healthy was, of course, another major miracle, but tonight was another miracle!  To publish our book AND have so many people who care about our little story was simply indescribable, even for an author.

People from every walk of life were at this event: my childhood friend Naomi and her mom Akie (who are in the book), my long lost Stanford friends, my nurses and respiratory therapists from Stanford Hospital, countless parents  from the CFRI community (including those who’ve lost their kids- how brave to come!), CFRI staff, volunteers, even famous Rich D., a USACFA Board member, a nurse from the ICU, friends from my former writing group, Jazzercise friends, my former therapist, my political friends, Andrew’s massage therapist, work colleagues, my transplant friends, and brand new neighbor friends! This was like a beautiful dream. Someone said “This is like your wedding!” and someone else said “This is like the [CFRI] conference!” There was so much love in the room, I thought I’d explode.  So many people to talk to but so little time as Ana kept yelling ”Hurry!” in Spanish, as we scribbled illegibly in books. We kept people waiting in line for a long time. We appreciate everyones” patience while I had a chance to write brief but heartfelt sentiments in each book (you know I could’ve written so much more!)

 The most meaningful visitor tonight was from Jon R., whose face and name we did not recognize. He introduced us as a former employee in the Dean of Admissions’ office at Stanford. He said that back in 1990 he read Ana’s and my application for admission to Stanford, and he chose to admit us both. Some days ago he was browsing through the bookstore and found our book, and somehow recognized our names and CF story. He opened the book up and read the Stanford section. If you read the book, you’ll know how we felt during our Stanford years about being students there. Tonight he told us, “You were meant to be Stanford students.” Wow. 

In short, we sold 60 copies and 10% of all sales at the store between 7:30-9:30PM will go to CFRI. How wonderful.

We are basking in the joy of what God is allowing us to do. It is humbling. It is amazing. It is love.

Yet, I must mention that today, a long lost friend called in tears because she is end-stage with CF and was in despair for a transplant. This reminds me that our story is not only about us, but it describes the lives of so many we know, who cannot write right now. The trials and tribulations with our CF really represent what is still happening to many people with CF. Life repeats. I define true success of this book as giving hope to these people walking in our footsteps after us.

We are debriefing to prepare for our next signing at Stanford Bookstore on Thursday.  If you are local and already have your own copy of the book, just bring it from home if you’d like us to sign it.

Speaking of Stanford, I am so pleased Stanford won Big Game! I cheered as loud as Camp Isa did (see page 274). Another miracle!

Thank you for your interest in our story and we wish you pleasant reading.

Best wishes, Isa

Dear Friends,
Thank you again for continuing to follow our blog. It has been a busy time with our book having been released three weeks ago. We look forward to several upcoming book signings. Thank you to all who have purchased this not-so-cheap book and for reading it already. It has been a wonderful journey so far to share insights, connections and memories with many of you. We have received an enormous amount of feedback by email, and apologize if we haven’t responded to you as it is hard to keep up with the emails. We are busy with marketing the book, which poses an internal challenge since I’m not one to like the limelight or believe in self promotion. We will see where this next chapter of our life takes us.
On another note, I continue to be blessed with an amazing recovery. My lung capacity is now at 75%. It is astonishing each day to be able to breathe, walk, shower and eat normally again. Little things have become tearfully joyous- like buying a new pair of running shoes, singing Christmas carols in church, blowing out a candle. In a few days I will celebrate my fifth month post-transplant- time flies. I completed a fantastic Pulmonary rehabilitation program at Sequoia Hospital last week. I went from barely being able to walk on the treadmill in August, to being able to jog for 7 minutes without stopping in Nov. I would recommend Pulmonary Rehab to anyone pre- or post-transplant with lung disease to increase lung capacity. It really made a difference!

I know there is a family grieving this holiday season without their loved one ; I keep my donor family in my thoughts as I reflect on the holidays. Our family decided on a no-gift policy this Christmas, since the greatest gift is that we are all alive and together, and nothing material could ever compare. Everything seems to be put into perspective when one comes close to death. Many of you already know that.

It’s a busy time of year and I wish you all health, strength, patience and minimal stress. Thank you again for all your support !

ANA STENZEL