Dear friends,

It has been a while since Ana or I have posted on our blog, and I am finally back. Life has been “slow” but also busy in its own way.  No trips at least, til April. Fortunately, Ana is doing much better. She has been home now for a good month, and is still doing several infusions a week for her CMV. She decided to go on leave from work, which is a relief to many of us who care about her.

Life in February and March is what I’ve intended: calmer, slower, freer, but still active with plans. I’m living like a healthy person; with most of my time consumed by planning for things in the future. It’s a strange way to live, always looking forward, spending today for tomorrow. Even if Ana had a pretty serious road bump, we are still planning on traveling in April for several CF education days, going to Japan in May, and Ana is planning her wedding for June.  We are hoping to go to DC in July for the film, and to the Transplant Games in August. We are optimistic (or in denial) that Ana can recover fully and live her normal life again. We have to believe that, right?

I actually haven’t posted because as I told Andrew, “I don’t have a whole lot going on.” Well, actually, I do, but nothing that seems so publicly interesting. After all, I just finished my taxes… The film project continues to grow. We are so incredibly touched and grateful for the generosity of so many friends- near and far- who have supported this endeavor.  This truly is a film created by a community of people who care about CF and organ donation. It’s just amazing- I’m so humbled. There are so many important causes out there, and it’s very touching to know people include this film project as one of them. 

While I’m busy for the film, I do not actively promote it because 1) I’m not comfortable with that and 2) my husband and Marc Smolowitz, producer, are doing a great job already.  I am helping this wonderful team plan additional events this year.  There are endless emails and google documents to deal with. Other than the film, what is new? I started writing a little bit for the Stanford Alumni Association Wellness blog.  I’m still writing for the United States Adult CF Association newsletter called the Roundtable, and I just submitted my Spirit Medicine article. Writing the Spirit Medicine article is my absolute favorite thing to do.  This month, I have tried help to interview a young Japanese man with CF by email for the Roundtable, to share his experience in Japan.  I burst out into tears when I read what he wrote. It’s so touching, and so hard to live with CF in Japan. So lonely.

My days are also full with the usual emails/meetings/calls related to all sorts of things… Retreat and Conference planning… it never ends! I’m helping the Patient Affairs Committee for UNOS re-write educational handbooks called “What Every Patient Needs to Know”, and “Living Well After Transplant”. I’m also helping Michelle Compton to write and compile stories for a book of images from “The Breathing Room”, a CF artistic expression project. So all these projects have kept me busy!

It’s crazy, I want to get a job, but I’m too busy! I’m exerting a lot of energy and someday would like to be paid for it. But it gives me great joy to be needed, and to have flexibility in my life by volunteering.  Sometimes I stop and think how I don’t get tired doing all of this– a refreshing realization. 

I’ve also had a few speaking engagements lately at UCSF, CPMC… the invitations keep coming and it’s very flattering. The most moving talk we gave this week was to the CF team at Genentech, the makers of the CF drug Pulmozyme.  We met up with Mark, a longtime colleague and friend at Genentech to speak to some new hires. We’ve known him for nearly 13 years!!! It’s so great to grow older together, thanks to biotech advances which have kept us going.  Ana and I have been blessed to speak to the Pulmozyme team since 1993. I remember when I was so shy and self-conscious about talking about my disease. A few times I’d just break down crying. After the clinical trials in 1992, we started to give talks about our lives (called “Psychosocial Aspects of CF/ Patient’s Perspectives”) to the GNE staff, and received such incredible validation. We’d leave Stanford where we put on this facade of normalcy, full of future planning and pretend-health, and then go to talk for an hour what it was REALLY like living with CF. We taught the staff how CF affected every aspect of our lives, and how new treatments like Pulmozyme were so desperately wanted, needed and embraced.  The staff listened to us, asked questions, admired us, and gave us permission to be honest. I call this narrative therapy. Nothing to be ashamed of.  We were doing our best and this team of compassionate business people reminded us of that.  So over the years, Ana and I received the training that telling our story is not only acceptable, it’s helpful to others.  I even remember walking up in the ICU after my transplant and seeing two of my favorite GNE friends,Mark and DeeAnne, at my bedside. Wow. I lit up with a huge smile and we prayed together. Now that’s dedication.

 Next Tuesday we speak for the Stanford lab professionals, and I just finished my powerpoint.  I never thought my old sputum culture reports from 2002 would come in handy… well, they’re in the powerpoint! On the 25th for the Japanese medical students who visit Stanford as part of  the “Exploring Health Care” series. Oh, what would I do without powerpoint!

I’ve actually started hospice volunteer work. I haven’t met a patient yet, but I am planning to run a bereavement group and a writing group for volunteers. Initially, I was going to lead a writing group for bereaved family/friends, but this didn’t get off the ground.  My ultimate plan is to get a job in this field, but with all the plans for 2010, I think it’s best to stick with a flexible schedule. 

On another whim for this hospice volunteer work, I was invited to participate in a pet therapy training. I could visit end-stage patients with my dog Rupie. What could be more healing?? I would like to share this tender loving dog with those who could use some comfort.  So after a serious talk with Rupie about her cooperation, and a 5 minute home-based practice run (sit, Rupie, good dog), I head for the ‘Pre-Screen’ for Delta Society- Pet Assisted Therapy Program. Andrew shook his head as we drove there, saying,”She’s never gonna pass. She’s a basset hound.” Well, Rupie got all excited to see other dogs, and was ready to play. Though they were all on leash, we had to walk in a circle. Rupie pulled, eager to sniff the other dogs. Then we had to stop, and Rupie wanted to keep going. When it came time to sit, Rupie was so excited, and staring at every dog and person in the room. She sat after about four ‘Sit!’ comments, crescendo-ing in loudness, and heavier tugs on the leash. Then she had to ‘lay down’. Well, I’ve never taught Rupie this, so she failed that. Rupie sat nicely when the lady with a walker came by her, and when the well-trained dog (teacher’s pet, literally) walked by her. And she LOVED when 5 adults came down on her to pet her like crazy. She melted. But, sadly, after the brief test, the instructor said, “Rupie needs obedience.” She has the personality for a therapy dog, but she hasn’t been trained… so now I need to decide if I want to give her more training. She is 8 years old, after all. Can an old dog learn new tricks?

My greatest efforts lately have been getting back into shape. Because of tendonitis, I haven’t really walked for a year, so I’m a blob. I have been swimming too much, so my shoulder is now inflammed. Now I go to physical therapy for foot and shoulder; and just this fills my schedule! It is amazing how weak my muscles are– probably from steroids– despite my level of activity. With weakness comes injury with overuse. Argh! I’m just getting old. These drugs are taking a toll. So, I am doing more yoga, and trying to build muscle. Not easy, when my muscles burn with any strain.  What happened? I used to be an athlete! Well, I can be thankful these tendon issues are my only medical problems. And I have to remember, the Transplant Games are for FUN.

For fun, I want to share that Ana and I saw Disney on Ice last week. My CF camp friend A.B.  has been an ice skater since her earliest years, and that has kept her lungs healthy. She’s now playing Minnie Mouse and Tinker Bell in Disney on Ice! She has traveled the nation, and now is going to Japan, after she gets married in May! Wow, she’s growing up!  I’m soooooo proud of her. She skated so gracefully, as if it was no effort at all. She didn’t cough, and is actually in the best shape of her life, thanks to all the exercise. It is amazing what potential people with CF have when they receive the best treatments and exercise throughout their lives. I really felt like a proud older sister!

Next week, I’m going to Hawaii next week to visit my 94 year old Grandma, whom I call Obachan, because I have a free ticket and want to see her and my uncle and aunt before my year gets too busy. So I’ll let Ana write next time. I’m rambling, as usual.

I close by publicly thanking my wonderful husband Andrew for the best 16 years of my life. Sixteen years ago, I sat next to him around this time in the evening, on his dorm bed, in his room on the 2nd floor of Roble Hall at Stanford, and he asked me if I wanted to go out with him. His genuine devotion, emotional sincerity, and mysterious strong love for me made me say yes, and would still make me say yes today. Thank you, Andrew… Happy 16th Anniversary. I never imagined we’d be here to see this day. Thank God.

Thank you for allowing me to share my normal life happenings with you. I hope you all are enjoying your day-to-day. I know some of you are struggling healthwise and I wish you strength, endurance, and patience. I hope you can find some normal-ness in your day-to-day.

Take care, hugs, Isa

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