Hi friends-

Happy June! Thanks for reading up on this blog again! I hope June finds you well, growing, learning and finding some satisfaction in every day living.

Ana and I are thankfully healthy, and because of that, we are able to live full good lives.  On Friday, I went to clinic and thankfully had very good PFTs. Ana is struggling with the fact that her pancreas decided to stop working. She is losing weight and not absorbing anything, so much so that her close friend gave her a gift: a cork! Yes, humor continues to be our best medicine. She’s going throught a lot of testing, and I hope she’s okay.

This late May and June continue to be hectic. I have three talks to prepare for to give myself in June. Ana and I are busy preparing for a trip to North Carolina, where I’ll meet some good friends and give two talks. I also plan to drive out to Charlotte to see my neice and my in-laws. Ana gave two excellent talks last week- one for the Genetics of CF at the CFRI General Membership Meeting, and one with me for Dr Ron Kopito’s undergraduate class at Stanford on the molecular genetics of CF. The CFRI talk was fabulous- Ana knows everything there is to know about CF genetics! Dr Kopito is a world renowned cell biologist who studies CF’s basic defect (his father studied CF as well). We had toured Dr Kopito’s lab when we were sophomores in college. A young postdoc then came up to us and said, “So, does CF affect your life?” and we were astounded. Now, Dr Kopito had his postdocs and his undergrads read our book to understand the human side of the cellular mechanisms they were studying. Amazing! I was blown away that our book was being read as part of Stanford curriculum. Are we that worthy? The students asked many questions and really seemed engaged and interested, even the week before final exams. As we shared Chinese food together and chatted casually, I actually felt like falling to me knees in front of these researchers. They are the ones who put in 14 hours a day to better understand the most challenging, mysterious cellular details of this disease at a level we can barely comprehend. They are the soldiers of this CF battle alongside those of us trying to breathe.  We are soooo  graced. First by health, second by being accepted to a place like Stanford in 1990. I was extremely flattered and thankful for Dr Kopito’s interest in our story.

I hope you had a great Memorial Day weekend. For the first time, I really ’got’ what Memorial Day is about. First, I piped with my band on Sunday for a quaint Portugese Parade in Pescadero. I bought my favorite artichoke bread afterwards and went on a good hike by myself in the redwood forest. It was so peaceful to be among the misty redwoods, belly full of bread, inhaling thick cool fog. Solitary hiking is good for the soul. The next day, I piped with my band at our local cemetery on top of the coastal foothills. It was foggy and cold, and I shivered through most of the performance. In the early morning the visibility was very poor. We pipers would try tune on our own, far away from the group, and it was cool and eery to see a piper approaching our group, walking towards us through the dense fog in full gear. Even the 25 pounds of wool and ostrich feather bonnet could barely keep me warm. For two hours, we piped at five different locations around the cemetery. We walked over graves and through masoleums, and I saw all the names of couples buried together, family plots, recent deceased and distant deceased people. Families gathered around plots to place flowers. Some brought chairs to have a picnic with their loved ones. Many, many families would hear us piping and come and gather to listen, wiping tears from their eyes. I could feel their longing, their faces telling so many stories with eyes full of memories. I appreciated being able to move people through music. The cemetery offered a free lunch on Memorial Day and it was beautiful to recognize how many families face pain this holiday.

This Saturday, I am proud to say that I led my first docent tour of Edgewood Natural Preserve, a local county park renowned for its native wildflowers. You may not know that all my life I wanted to be a ranger, but my CF has limited that goal. Now I decided there are things I can do to reach this goal, without making it a career. So January through April I took a docent class to learn about local native plants, geology, and wildlife. I am passionate about this!  It gives me a solid grounding for not only who I am but also where I am- they call that ’sense of place’.

The visitors on Saturday were a group of “Brownies”- they were adoreable! I led about 4 girls and 3 adults. They asked questions and touched and smelled the plants. One girl was 7 years old and extremely knowledgeable. She even knew the word ‘nocturnal’, and the names of many plants! I enjoyed to tell stories about the land, to inspire a sense of wonder, to point out funny names and uses of plants. I don’t know latin names and don’t care to! Neither do the girl scouts, so my level of knowledge was fine. Andrew came along with me and said he learned alot!

Yesterday, Ana and I had a very successful book event in collaboration with the CF Foundation. The event was in Livermore at Zephyr Grill and Bar. Our friend and super woman Diana planned this event like a fiend. She was so organized, connected, and passionate. About 60 people attended. We spoke and did a reading in a cozy private room behind the main dining area of the restaurant. Many of our transplant friend were there as well as new and old CF community friends. We sold 27 books for the CFF.

The reason the title of this entry is ‘a day of synchronicity’ is that this event was indeed a symbol of random connections, making me think something higher was in charge.

First, we asked/begged my brother to come to this event. He hasn’t been to any of our book events, probably because he was embarrassed. But we told him this would be our last local event, we wouldn’t embarrass him, and he actually agreed to show up. Granted, he showed up at the end, when our speaking was done, but as he entered the restaurant, an old long lost high school friend who was eating at the restaurant recognized him, greeted him, and came along to our event with him! I think meeting Jeff was a way to make Ryuta comfortable. I remember Jeff as one of the most friendly and nicest guys in high school. We enjoyed to reconnect with a long lost friend, who is now teaching in Castro Valley.

Next, by chance, a woman named Jennifer was eating at the restaurant and saw a poster about us in the front of the restaurant. It turned out she was the mother of Kristi, Ana’s CF camper in 1991-1994. Sadly, Kristi died in 2001 at 25. She used to call Ana alot, and sadly got very sick very quickly and didn’t have a chance for a transplant.  We had reconnected with Kristi’s mom a few years ago when Jennifer’s friend worked with our friend Jessica from CF retreat, by chance, and mentioned CF, shared who they knew with CF, and viola! The connection was made. We had emailed Jennifer about this event, knowing she lived in the far east bay, but she said she didn’t know about it. Her family had toured Livermore Labs and came for an early meal at this restaurant- of all the places in Livermore! She shed some tears as we shared some memories of Kristi. We met Kristi’s brother, who was a toddler when we knew Kristi- and he’s now 18! It felt good to meet again.

 We also met mothers and fathers of friends long gone- Michelle and Karen, Charlie, and many parents of CF kids and adults still thriving. We met a friend, Kriss, with advanced CF who is kicking and screaming like we were once, to stay off the transpant list. We could talk like long lost friends. So many common journeys… And we met new friends and friends of friends. So many wonderful people to know in this world. As usual, we spent more time chatting than doing business, making my patient husband wait for me, and staying over past our welcome.

Our event hosted the California Transplant Donor Network, the Breathing Room, and CF Foundation, and we made our pitch for Heroes of Hope. It was a great symbol of collaboration among many talented agencies.

We enjoyed meal with Andrew, Trent and our brother and his fiance, celebrating togetherness and lots of happy family plans ahead. I am so happy to be alive!

Now I’m home packing and trying to make order in this house. We are having our windows replaced and interior painted. There is chaos. Rupie has some health problems so it is a bit stressful. Life is full. 

Anyway, excuse the excessive joy. It has been a great few weeks. I know that’s not the case for many. I wish it was so. But we all have vicissitudes in life. Everyday I think I must enjoy my health, my joys because it may not always be so.

I wish you all a full and happy June. If there is loneliness may you know you’re not alone, if there is sickness, my prayers are that it is temporary or you can find comfort in distraction, and I hope you are all loved.

Thanks for your attention and be well,

Isa