Dear faithful blog-reading friends:
Thank you for your interest and perseverance with our blog! It has been 3 1/2 months since I’ve written…
Wow, another glorious weekend of travel. It has been months since Ana or I have written on this blog. I can’t really say why we haven’t written, except that both of us continue to be full engaged and immersed in our busy lives. Ana returned to work in mid-April; I have been working 28 hours a week since February, and our free time has escaped us. From May to late July, we were completely focused on training for the Transplant Games of America. Ana was team captain for Team Nor Cal, our group of about 50 participants who went to Grand Rapids, Michigan. Many of you have seen our glorious victories on Facebook. It sure feels great to be 40, when we are competing with 48 year olds! We both came home with a satisfying clinking sound around our necks!
Where do I start? The springtime brought us to Hawaii to speak at Trippler Army Medical Center, to Sioux Falls for a movie screening at Sanford Medical Center, as well as to Boston, and to the Japanese American National Museum in Los Angeles in late June. We had a calmer summertime, but with the Games, CF Retreat and a big huge 40th birthday party for my hubby Andrew on 8/24 (with a surprise visit from Andrew’s parents). I spoke at Genentech, at the Society for Transplant Social Workers Conference, and other big events during my “day off”. Though we didn’t travel, it didn’t feel like much respite. I spent June 9 competing for the first time with my bagpipe band…. And winning first place at the Mt. Tam Scottish Games! Our second competition, on Labor Day weekend in Pleasanton, was a great experience, but we didn’t perform as well with 7 other tough competitor bands. At the end of the afternoon, however, I had the chance to play in “mass band”—performing my bagpipes alongside 500 other pipers. It felt unreal, like I was dreaming. To top off my otherwise full life, I found myself a per diem position and now I work on Fridays, my day off. This will only last until February, when my fellowship is over. With a clean bill of health last week at Transplant Clinic (except for a diagnosis of Plantar Fascitis), I am so grateful for the energy to maintain this lifestyle, yet realize how critical it is for me to sleep well. I am saying no to some of my favorite activities in my life: CFRI Conference Committee, my writing for healing group at the local hospice… all to preserve energy and stay healthy. Five more months.Life is good.
I am now flying back from Jacksonville, Florida, after another successful film screening, thanks to our friend Ronni Wetmore and the Pulmonary and Critical Care Center of Northern Florida. Over 100 attendees came to the downtown “Jax” Public Library for a Saturday afternoon screening, with a great Q & A following. Ronni organized a reception and put so much effort into recruiting attendees and sponsors for this event. My dear friend and co-partner in The Power Of Two, Anna Modlin, had a chance to join me, making the trip so special. We stayed with Ronni in her home, made delicious meals together, and stayed up way too late, chatting on the couch like old friends. Today we frolicked in the Atlantic Ocean together. It was warm, humid but not too bad, and sunny. The sand was fine and warm. Oh, it was paradise! Anna M. was high on life! Ronni and I giggled, watching Anna M. re-discover these ‘firsts’ as a new transplant patient. Of course, CF had to rear it’s goofy head as Anna got super hypoglycemic on the beach, and a lifeguard ambulance was called to save the day! After a shot of glucose, Anna was chatty with the hot young lifeguards. Yep… such is life with CFRD. And what a friendship we have cultivated. Ronni is a soul-sister. She too has had siblings with CF, who have profoundly influenced her to become a CF adult nurse coordinator. There are few people as dedicated and compassionate to CF patients as Ronni. I feel like I’m in the presence of greatness with her. She has a joyful and loving energy that reminds me that I need her in my life; that her path crossing with mine has a reason.
The summer brought further challenges, as Ana’s GI pain started to increase, her tumor markers increased, and she has rather sudden surgery(they had a cancellation) for a recurrence of her small bowel cancer. So unfortunately, she couldn’t join us for Jacksonville… though she thought she was well enough to… 14 days post-surgery! This has brought a heightened sense of urgency and fear back into our lives. Though Ana maintains her usual vulgar and brash sense of humor, we both are scared for what’s to come. On top of that we’ve been disappointed with the poor care from the medical oncology team at Stanford (though the surgeons have been great). We expected so much more from a place that looks like the Hilton. Would be nice to invest in staff in addition to the chandeliers! (that’s all I’ll say– you know we are not ones to complain). Ana is on leave now from work, thankfully, and I am saturated in work. I am not sure when I will have to re-prioritize this current situation. We are taking one day at a time. All we know is that we are surrounded by love. There are so many calls and visitors, Ana has to schedule people in. I know I’ll be in a place to need lots of support and help from those who have ‘been there’ like Ronni. I am so blessed to have friends who understand how hard this is for Ana… and me. And thankfully, once again, my mom/parents are up here regularly, to be supporters and advocates for Ana.
For now, though, before chemotherapy starts again, Ana is focused on going to Japan. Our major supporters, Naomi and Misako, are working hard at making the release of the film in 25 cities, through our distributor, UpLink, a huge success! We are so blessed to have their support! Our fall is very full of travels, and we’ll just keep fingers crossed that she can make some of her goals. Japan is Oct 3-13, and her stitches should be healed by then. We will openly accept whatever fate unravels for us.
And, stay tuned for the DVD release on September 25! Hooray! We are so grateful for our distributors who will take the hard work off our plates and sell the film to the world.
Thanks for reading this blog, for being concerned, caring, and loving. That’s all we have in life. You. So thank you.