Thank you for reading this blog. It’s my birthday, or I should say ‘our’ birthday, and I felt compelled to write. I’m 38! So is Ana! I’m officially in my late 30′s, eagerly awaiting the 40 milestone. I write with a loud sighhhhhh because, well, Ana and I are still here. We made it to another birthday.
Wow, I’ve lived a long time. It has been 20 years- TWENTY YEARS- since I graduated from college! My parents had an 8 year old and twin 6 year olds when they were my age. I can honestly say I never, ever, ever imagined I would reach this day. Eight years ago I spent this day in the intensive care unit after a massive hemoptysis. Three years ago, I brought a cake to Ana who was so short of breath from rejection, she could hardly celebrate. Two years ago, Ana was in the hospital. I can’t remember what we did last year… yep, I’m getting old! For every single birthday cake I’ve had, Ana and I have blown out the candles with one deepest wish: to grow older. And here we are. Yet again, my wonderful twin gave me anti-wrinkle cream for Christmas. I have a foot injury that doesn’t heal. The skin on my hands make me look 60. I am slowing down- yes, I am!- and it’s actually just fine.
I’m sure Ana would agree with me; I’ve lived a damn good life. We have had unbelievable blessings. If it was to end tomorrow, I’d have no regrets. I have had a serious health problem that caused a great deal of stress in my life, derailed plans, created many losses, but I can finally say this life is a pretty good way to live. Because I knew I’d die young, I took control of what I could, planned and tried to do what I wanted- and for the most part succeeded-; I said what I wanted to people, and I faced head on the emotions and thoughts that came with living with this knowledge of a shortened life. That has been a gift.
This past year has been so busy; I have gotten caught up in the world of the ‘normals’. Ana and I have fought more this past year than our entire lives; and I think our partners would say the same thing. Ego, schedules, wanting others to do what we want them to do– those are the challenges that consumed us. I stress out over deadlines, long lists of things to do, a messy house, and the complexities of relationships, and I think, wow, this is real life. Just like normal people. Yes, there have been doctors appointments and minor medical ‘bumps’, but overall, in this busy-ness I sometimes forget to stop and just be– which is what my illness forced me to see.
The best thing about having time- that is, getting older- is to have the luxury of more time to learn about oneself. I am finally understanding why I’m insecure, or why I’m drawn to certain people, what I’m good at and what I’m not, and what path is best for me. I am less planned, because things just happen unexpectedly, and I can’t hold onto what I want in my head. I have learned when to share and when to keep things inside. I’ve learned more and more about how my emotions drive reactions to events, and that I can have some control over those reactions. I learned how rich I can make my life by just connecting with people and investing in relationships. Of course, I’m not ‘done’ with learning; I look forward to many more years of gaining insight.
On a different note, yesterday, I had a small surgical procedure where a leftover tube from a mediport was removed from under my skin. I got into one of those dreaded gowns and had three people ask me the same long list of questions while I lie on a gurney, and when I was in the OR and had the sterile shield drape put over me, I thought, “Oh, yeah, this is my familiar life.” (I also thought, what a waste of money!) It’s been a great break so far.
So my very kind anesthesiologist was insistent to give me ‘something to make me relaxed’. I really didn’t need that; I told him I’m not anxious, I am fine; I’ve had a lung transplant and so what’s a little incision if I have local novacaine anyway. We went back and forth, me once again assuming the demanding controlling patient role. I had too much to do when this was over, and had to drive home to continue my life! Besides, being on Verced or Fentanyl remind me too much of sickness; I had a fentanyl patch on when I was at the end of my CF. I have had control of my senses for so long, I didn’t want to be woozy. Nonetheless, I was chatting away on the operating table and the kind anesthesiologist gave me a higher dose so of course I felt drunk. Maybe he didn’t want me talking!
Ultimately, after several hours of recovery, we pulled off the Stenzel trick. The hospital won’t discharge you unless you ‘have a ride home’. Well, Ana had the morning off so I called her and told her to come by. She picked me up when the nurse pushed me in the wheelchair to the pick up lot, and then Ana drove me around the block and dropped me off at my car so I could go on my way, and Ana could do her thing. Done.
Today I spent the day with close friends before going to the Lung Transplant Support Group. We usually meet for lunch before the group at PF Changs, but I insisted on going to a fabulous Japanese restaurant, Koma’s Sushi in Menlo Park. A few of the people who joined us had never eaten sushi before, and it was funny to see their reactions to raw tuna, wasabi, edamame, and even eel (I never told them it was eel; I said it was fish!). I was reminded of my lifelong inner saying, “In America I feel so Japanese, and in Japan, I feel so American!” We had a wonderful time, relating to each other because we’ve been there; sharing our medical challenges, and acknowledging that we are all just doing our best and realizing that even when we are healthier than before, life can still be hard.
Our 38th year is going to be busy- my brother is turning 40, parents 70, Ana’s wedding, Transplant Games… and we have the Power of Two film to create- so much life to live! I open my soul to the unknowns of the next year and welcome whereever life takes me. Although I always have fear if this will be my last birthday, I am living like it’s not, like I have many years ahead of me. It’s such a refreshing mindset!! I want to personally thank all of you who’ve allowed me to get to this point, especially my devoted Andrew, family and close friends. Thank you for your well-wishes and I look forward, God willing, to grow older and wiser together. I hope all my CF/transplant friends reach their 38th birthday and counting….
PS The best birthday gift I received was to hear news that Solvay Pharmaceuticals filed for approval of Creon enzymes in Japan!!! There is hope that the Japanese CF patients will have enzymes sooner rather than later! The task is far from over; there is more to be done to get Pulmozyme, TOBI and other great CF drugs to the Japanese and to all non-Caucasian countries where CFers need them.