Happy Independence Weekend 7-5-08
Dear Friends,
Thank you for continuing to read this. I am truly humbled that you have interest in learning about what is going on in our lives!
I hope you all are enjoying your July 4th long weekend. It is a great feeling to stop our busy lives and reflect on the joys of summer, and the gratitude I have for the freedom of this country.
Yesterday was a wonderful day. Some of you may know I have learned to play the bagpipes, and joined the San Francisco Stewart Tartan Pipes and Drums. I’ve gone to practice every Tuesday night for the last 1 1/2 years. It is a warm and welcoming group of people, even for those without Scottish blood! So, on July 4th, was a reward of my practice. I marched in the Piedmont (small town near Oakland) Parade! It was a short parade less than a mile long, but we played 6 tunes and I played 5 of them! Last year, I only played one tune! This year, I just haven’t memorized one of the 6 yet! It wasn’t too hot either, so sweat did not blind me like it did last year. Our band had to learn interesting formations where we criss-crossed through each other mid-song, and slow-marched and then sped up, and with my prograf brain damage it was quite a challenge to focus on the music, the movements and the pipe major (conductor)! The crowds loved us, even as little kids covered their ears as we passed. In the middle of the parade I had an out of body moment. Suddenly I felt like I wasn’t really me; like I was dreaming. I kept asking myself, “How did I get here? Is this really my life? What am I doing, piping in a parade?” I just remember living in the East Bay, in Berkeley near Oakland, and being so sick with CF, that the area itself just reminds me of being short of breath. And now, ten years later, I am marching in a parade down the street, blowing my brains out into a loud bagpipe, screaming to God and the world that I am very much alive. What happened?
The greatest joy is that near the end, I recognized a short skimpy dress and saw Ana in the crowd taking pictures. She was there with my two closest friends from college, and their families, along with Andrew. I kept my stoic bagpiper face and avoided the distraction of smiling and marched ahead. But it warmed my heart to know Ana was watching me pipe in this parade. Last year, my uncle and aunt visited us when Ana was so sick she could hardly walk. I think he came down to say goodbye, actually. We had a barbeque at our home, and Ana was so miserable. Now, she got to see my march in this parade.
Funny story: Ana was stopped by the Puritan fashion police, people dressed up in colonial outfits, and cited for “indecent exposure and inappropriate dress!” She received a ticket and then another one for ‘excessive laughter.’
We truly enjoyed going to lunch with our college friends whom we have known now for half of our lives! We played with and held their kids and reminisced about our days at Stanford. It is so wonderful to grow old together! We enjoyed ice cream sundaes together, a treat of July 4! Never mind my sugar was 364 when I got home. The marshmallow cream was soooo worth it.
After a perfect nap, in the evening, we went to Ana and Trent’s home to enjoy a BBQ. The two of them prepared enough food for 20, although only 7 of us ate. We met Trent’s friends and enjoyed warm conversation. In the night, Andrew and I drove up to our local community college parking lot and overlooked the Bay and the distant firecrackers. I insisted on going- because there is only one July 4, 2008 and we are both alive and well now, so we might as well enjoy the tradition of the firecrackers- even if it’s old hat.
These days Ana and I are re-living the moments of one year ago- how she used a wheelchair, how she couldn’t move, how she went to a party and took her oxygen off briefly because she was embarrassed and then nearly passed out, etc. It is absolutely miraculous that we went swimming today and raced a 50 m butterfly. I cannot believe that she was re-transplanted. One week from tomorrow is her one year anniversary. I didn’t even swim butterfly until I was 3 years post-transplant, and Ana is flying like it’s no big deal.
It is bittersweet to share this good news. Today was my friend Siobhan’s funeral. I didn’t go because I was feeling so exhausted all week and just needed to listen to my body and not drive 3 hours one way to see her family. This is my new decision to pace myself. I really wanted to go but I had to set my limits, and be selfish, given the upcoming events next week. And Ana’s good friend with CF/transplant was placed on a ventilator today, so I kindly ask for your prayers for Dawn. She is on the top of the list and we are all hoping and praying for a miracle. Sometimes I don’t know what the point of praying is, because I feel like each person’s life will unfold how it is meant to unfold. Prayers just seem like our own desire to control the situation. God didn’t listen to Siobhan’s prayers, but he did for me, for Ana and for many other lucky ones. I hope he listens to those praying for Dawn.
Another person whose prayers were answered today was Rich D. Today is his 40th birthday!!!! He is proud to be an old man:). I went briefly to celebrate with him in San Francisco. It is such an amazing feat when someone with CF lives to 40 without a transplant! Rich writes for the CF Roundtable, a wonderful newsletter that I highly recommend. Rich is hanging in there and quite strong, and one of his many assets is that he is an extremely likeable guy and is therefore surrounded by loving friends. That is the best medicine to help someone reach 40! Hooray, Rich- I wish you many many more birthdays ahead.
Another miracle- today my friend Joyce celebrated her 8 year heart-lung transplant birthday and is thoroughly enjoying her 5th decade of life! Yes, she was called for transplant on her birthday- what a great gift, eh? You go, girl! I am so happy to grow older with my transplanted buddies. Wow.
In five days, Andrew and I will be leaving for Pittsburgh to attend the US Transplant Games. A group of our team, Team Nor Cal, were interviewed by our local sportsman, Mike Shumann (a former 49er) on the ABC Channel 7 news on Wednesday. It will air on the Monday July 7 6pm news. We swam at the challenging 50m Stanford pool and ran around the track. It was a blast. If you are local, please check it out.
Okay, now I confess that the last week or two I’ve been a basketcase. I’ve been training like crazy, and I am frustrated that I am not faster. This is as good as this body gets, so close to the Games, with my limited training sessions since our road trip. I remind myself to just be grateful I can even be athletic! But the burning and breathing and struggling is so, so, so hard. I panic easily in the pool and have to breathe very hard. I have so much fear that something is wrong with my lungs because I breathe so loudly and my airways collapse causing this weird stridor sound. I fear that something bad will happen before or during the Games. I remember how strong Ana was in 2006 and how she fell apart shortly thereafter. So I am superstituous that something like that could happen to one of us after these Games. Every little chest pain or breathlessness makes me think this is the beginning of the end. If I can’t improve my time on the 100m backstroke (backstroke’s like a test of aspiration, by the way), there must be something wrong with this body! Oh, the fear! It is so easy to be overwhelmed by it. What is wrong with my head??!! I recognize some of it is normal. Some of it I must consciously control. I can’t focus on this invading thoughts of fear. I must let go, relax, and celebrate this moment here and now, because all is good right now. I trust others with CF or post-transplant have similar experiences. I know Tiffany wrote about it in her book, “Sick Girl Speaks.”
Andrew and I were driving home from the gym and I was lamenting how painful my sprints swims where, and I kept asking, “Why, why, why am I torturing myself?” He pulled down a photo button I have of my donor Xavier from my sunshade and said, “This is why you are doing it.” He is so right. I am doing this because Xavier has allowed me to be this strong, because he can no longer be. Get a grip, Isa.
Anyway, my suitcase is packed and I am doing prophylactic inhaled antibiotics/laxatives to make myself as well as possible for next week. I am so excited! I can’t believe I am going to go to the Games with Ana for the third time. When I get on that plane, I will be ready to enjoy the experience as yet another gift that my new lungs are offering to me. Life is good.
I wish you all a wonderful weekend. Thank you for reading my blog. I appreciate your understanding and patience, your tolerance of my confessions. Let me know if you can relate to any of it!
Best wishes for a safe, healthy, and wonderful July. We are in the heart of the best time of year. May you absorb the sun, breathe deeply the outdoor air, and give yourself a break from your hectic routine to laugh, relax and love your friends and family.
Take care, love, Isa