Ana and Isa’s blog

Hi friends,
I hope you all are well. I wanted to report more good news! Hooray!Praise God!
Ana had a bronchoscopy last week and today her doctor’s they said “THERE IS NO EVIDENCE OF REJECTION!”. We can sigh with relief for now, and her body is accepting the new lungs. How blessed. Her pulmonary function test also went up 4% to 55%! Although this is still average, the docs are pleased that she’s going on the right trajectory.

On Friday, Ana, Rob and I went to Sawyer camp trail. Since Ana was 10 weeks post-transplant, her goal was to bike 10 miles- something she did in August 2000. After 1 1/2 hours, she did it! She had to get off to rest a lot, and struggled on the hills, but she’s the little engine that could and kept pushing. I warned her not to expect the milestones of her first transplant, reminding her that it’s okay to accept fewer athletic achievements the second time around. I also said if she did 10 miles in 10 weeks, does that mean I have to do 216 miles since I’m 216 weeks post-transplant!?!?! I was lucky to celebrate running 9 miles, training for the upcoming half marathon. But it damn near killed me.
We were happy to be able to perform and be interviewed on Channel 36 for the CF Foundation last week. It appeared on TV on Sunday morning. It was very challenging for Ana to focus and say something articulate. She said, “I have to work soooooo hard- as hard -it’s like jogging up a hill for my muscles, it’s that hard to concentrate on thinking.” No one ever talks about the mental effects of the transplant drugs… how people who once were smart now struggle with attention/concentration problems, word-finding difficulty, and worst of all, significant memory loss. Nor do we recipients have any right to complain about these seemingly minor consequences, for the magnitude of our gain- we can breathe, we can live again. So excuse me if I’m whiney. It is just an adjustment to the life we had before.
We are busy marketing the book and I realize how self-conscious I am about everything in our lives soon becoming public for the world to see. I have been struggling with why just our story is important… all 7 billion people on this planet have an equally important story to tell. I also am self-conscious of the focus on my disease, something I was just born and lived with, not a skill/knowledge set that I learned and excelled at.
Anyway, I was fortunate to receive a wonderful web entry from an acquaintance from a few years ago, and she said:
“I was so glad to hear your story this morning on tv and to read more on your website. Your story is very inspirational, not just for families affected by cystic fibrosis, but for anyone who is dealing with difficult challenges. And it’s not just about the illness, it’s about the attitude and approach you both have chosen to take. The 3 values you’ve listed on the website are important for anyone to use… compassion for others, an appreciation for life no matter what it brings you, and a spirit that never gives up.”

I decided if our book can give one person hope and encouragement, then it’s all worth it.

Thank you, Nancy, for sharing these words with me. Just what I needed to hear.
I thank you all for your ongoing love and support. Six more weeks until the book comes out!
Take care and may you all take a great big deep breath right now.
Love, Isa

Dear Friends,
I hope this note finds you well and thank you for your ongoing interest in this blog.

After 3 weeks home, the eager-to-experience-the-world restless spirit within me was bursting to get out. With Andrew away in NYC, I urged Ana to ask the docs if she could join me for a few days. I would squelch my desires to hike a minimum of 10 miles but rather celebrate Ana’s pace, just being together.

So, we are happy to report Ana and I and our bassett-beagle Rupie Giles have returned from a 650 mile road trip (1 tank of gas in the hybrid), our “Thelma and Louise Part 1.” Ana got the green light from the docs to get away, so we drove north, hand on our knees, with a cooler and packed trunk, singing at the top of our lungs the lyrics to The Power of Two: “Now the parking lot is empty/Everyones gone someplace/I pick you up and in the trunk I’ve packed/A cooler and a 2-day suitcase/Cause there’s a place we like to drive/Way out in the country/Five miles out of the city limit were singing/And your hands upon my knee/So we’re okay/We’re fine/Baby I’m here to stop your crying/Chase all the ghosts from your head/I’m stronger than the monster beneath your bed/Smarter than the tricks played on your heart/We’ll look at them together then well take them apart/Adding up the total of a love thats true/Multiply life by the power of two”…

We headed to the Avenue of the Giants, in Humbolt County, to the majestic old growth redwood forests. We’ve always wanted to go there, since my camper Becca is from the area, which truly is, in the middle of absolutely nowhere (Becca, thank God you are alive!). I played my bagpipe under the massive trees, and it felt spiritual. God bless California! It was an extraordinary feeling, to stand beneath the 360 foot tall redwoods, and remember how small and insignificant our lives are. All the worry and fear about our own little lives seems trivial when compared to the grandeur of these living beings, that come to 2000 years of age. This is why we need to get out into nature and remind ourselves that the life force is so much bigger than ourselves. Rupie enjoyed romping around and all the new smells. We walked probably a cumulative total of 3 miles on Thursday, visiting various groves and walking along trails. Ana was strong and capable on flat terrain. It was pretty quiet, and we met mostly retirees and others with time to travel mid-week. We are so fortunate to be unemployed.

Then yesterday, we head out west to visit the famous Lost Coast. My goal in life is to backpack portions of it, and we got a taste of how grueling that goal would be… perhaps left to another lifetime. We walked along the trail, which is basically beach, for 2 miles one way, along the black sand (the entire trail is 35 miles long!). We had a picnic in the hillside, under the shade of an old cypress. The sun was shining, the beach was covered with brown pelicans, comorants, sea gulls and other birds, and we saw seal lion, seals and met someone who saw an otter. We saw tide pools with anenomes and seaweeds/algae of all types. A timeless life force was all around us. Again, I thank God for the opportunity to see this holy land, just within an hours drive of the redwood forests. Amazing. Most amazing of all, was how strong Ana was! It was a hard walk on the sand, and took extra energy to push forward. She was breathless and sweating profusely, but she wouldn’t stop despite my pestering nagging. I can’t believe how walking 1 mile, not even 4, was an impossible task just 10 weeks ago. Transplantation continues to bewilder us with it’s potential for resurrection. For Ana to breathe in the fresh sea air was a testimony to this.

Rupie slept the entire ride home, exhausted. Maybe it was because she chased, caught and killed a lizard… Ana thought she was poisoned!

Three days of giggling, cooing and gooing over Rupie, blatant insults, making fun of each other and laughing at our folly was the truest gift of this trip. We have set an ambitious goal to drive across the country together one day, perhaps for the book tour, and stop to visit friends along the way.That is “Thelma and Louise Part 2″. There will be no driving off any cliffs, by the way.

When we returned to civilization, we received the several voicemail messages that our dear friend Kathy has died. We’ve known Kathy since 1991, and knew of her in LA CF Camp in the 80’s. Because of her JW faith she did not receive a transplant, but instead is reunited with her husband who died 2 years ago to CF, in Paradise. Kathy and I spoke on Sunday, joked about death, because Ana and I wanted our road trip to be going to central CA to visit Kathy. But since she was re-admitted to the hospital, and the last safe place for Ana is to visit a hospital, I told her we’d visit when she was discharged. I can’t believe she died 12 hours after our conversation, early Monday. Our trivial attempts to console ourselves, that Kathy is finally free of suffering, just don’t cut it. But grief is just selfish, it is our loss that she is gone, and maybe her gain is that she is in a better place.

So we ended our celebration of life trip rather saddened, at yet another loss to our precious CF community. A reminder of why we must be impulsive, live hard, love hard and appreciate YOU.
Thanks to you and have a great weekend. We love you for caring for us so much, Isa

Dear Friends,
Back by popular demand, I thought I’d write something since many of you have said you are still checking the site regularly. Thank you so much for your ongoing interest. Ana and I are truly the luckiest women in the world to be surrounded by so much love.

I hope you are all having a spendid Labor Day weekend. Yesterday, the Stenzel family celebrated a brunch together to bid farewell to our mom, who has been Ana’s dutiful caregiver since April. Ana has become self-sufficient and can drive again, so my mom is permitted to return to her own life. Words cannot describe our gratitude for such boundless TLC, something we never asked for but it just came naturally. Perhaps it’s maternal instinct, but I think many mothers her age would be happy to pass on this caregiving role to other adult friends.

It is amazing to feel like life is returning to normal again. We are making plans, setting itineraries, resuming postponed goals. It is as if nothing happened. The nightmare of rejection we were in came and went so quickly. A year ago next week we climbed Half Dome in Yosemite. Then started the decline. And 2 months ago Ana could hardly walk. Mom reminded us that during one of Ana’s tearful panic attacks when she couldn’t move due to breathlessness, she screamed, “I don’t have time for this shit!” Too many things to do, too many plans and people to meet! I believe it is that determination that is allowing her to resume her life once more.

On a personal note, I wanted to share that I received an unexpected call from my donor mom last week that just completely blew me away- it had been nearly 6 months. My wonderful donor mom said some very powerful stuff, like that I was carrying the spirit of her son. She is a very strong Christian and says her son passed the baton on to me, to do good work and proclaim God’s love to the world. She says when she thinks of her son she thinks of Isabel and when she thinks of Isabel she thinks of her son. I never let her know what was happening to Ana but when she called I finally told her the nightmare we were in for the last several months, and that right now another family is suffering as she suffered, and she reiterated the fear that she couldn’t go through another loss again, that losing me would be like losing her son all over again. I was left overwhelmed with a sense of responsibility and love. This courageous mom had the strength to be so incredibly open to me, to confront such complex emotions, to look at a greater reason for all of this than her own suffering. I ended the two hour phone call with enormous gratitude for having my donor mom serve as my spiritual teacher.

Though the chances of Ana ever knowing her newest donor family are exceedingly rare, I hope and pray they have the spiritual strength like my donor mom to cope with their grief and grow infinitely.

I went to the Scottish Games today. If I may say so, bagpipers kick serious ass. Some of you may know I’ve taken up bagpiping as a hobby. It is a great lung workout. In fact, after playing every day for 5 days, my pulmonary function increased 7%! After hearing 800 pipers playing in complete unison today, I am more determined than ever to practice and improve (sorry Rupie and Andrew; Rupie howls and Andrew grimaces). I have to blow extremely hard, and today I had a strange vision that the pressure caused my lungs to detach where they were connected. I really hope that never happens. And I also hope I have the time and lung power in the years to come to perfect my skills. I still dread going through what Ana went through.

So, I leave you with a corny but from-the-heart poem I wrote. Thank you, Olin, for encouraging me to keep writing.
I wrote the poem after reflecting on my summer- I ran a 199-mile relay, climbed the Grand Canyon, hiked Mammoth Mountain and saw the Eastern Sierras/Bristlecone Pine forest, I saw one of my best friends get married in Seattle, I hiked and re-connected with a profound friend in Santa Fe, re-affirmed friendships at Cystic Fibrosis Retreat and Conference, I scaled Mt. Lassen, and I’m training for the Oct 14 San Jose Rock n Roll Half Marathon.

I wish you all a wonderful week. May the heat of the last days of summer energize you to get everything out of what you want from Summer 2007. We certainly did.
Love to you all, Isa

Just For A Moment

Just for a moment
I am invincible
I can be spontaneous
Do anything
Be anyone I desire
I can run and dance and love my body
I feel 22 again, the age of my new lungs
So I want to re-capture my youth
And experiment with who I really am
Unchained by sickness
Confidence exudes from my pores
For the first time
I feel beautiful
I can attract people
To fall in love with life

For a fleeting moment
I am seduced by the real world
And led into temptation
I have fantasies of being a park ranger
Of being a host in a national park
Of scaling the highest peaks
And hiking miles into the wilderness
Of parenting a child
Of traveling to far off lands
And being part of a greater cause
That betters another life
Or improves a social condition
For an instant
I am not haunted by the terror of the last chapter
I care not for infection, pills, insurance
Or my tether to the hospital
Because right now
Reality is perfect

Just for a second
Freed from bodily slavery
I’ve found a sacred happiness
Where I have no requests from God
Only gratitude

How I wish this moment would last forever