What do you get when you have 3 women, 1 double lung transplant, 1 cancer warrior, 2 CFers, 1 epileptic, 3 ports, 2 lawyers, and 1 cosmetologist wanna be? You get me Piper and Lisa hanging out together!
My cyster Piper, who is from NYC, was out here for a wedding and she was kind enough to make time to get together with me and our friend Lisa. I have blogged about both of them before. Piper had her transplant a little over a year ago, Lisa is the wife of a CFer who passed last year and now she is fighting breast cancer (and looking wonderful while doing it!).
So we all got together lunch. We updated each other on our current medical statuses (stati?), compared ports, told hospital horror stories, told good hospital stories. Of course we also talked about stuff not related to our medical issues, pets, family, significant others, and plans.
Lisa had to go to an appointment in the afternoon which left Piper and I to do whatever. We drove through Seattle a little bit and headed down to Pike's Place Market.
You can't come to Seattle and not go to the market, its a law. We didn't explore the inside of the market because its always crowded and Piper is, of course, immuno suppressed. We did see the very first Starbucks though. I don't know why that's such a big deal but everyone has to see it. There's always a line out to the street. A little further down we came accross an ice cream shop and Piper treated me to a sundae.
You can't come to Seattle and not go to the market, its a law. We didn't explore the inside of the market because its always crowded and Piper is, of course, immuno suppressed. We did see the very first Starbucks though. I don't know why that's such a big deal but everyone has to see it. There's always a line out to the street. A little further down we came accross an ice cream shop and Piper treated me to a sundae.
As we were walking back up the hill to the car Piper commented that I seemed like I was handling it well, not coughing much. Which was true, I feel good since starting my MAC treatment, but I couldn't help envy Piper because when she got to the top of the hill she could complete a full sentence without taking a breath, or three. When I see my friend who are post tx and doing well it just confirms for me that when my turn comes up I want it. Sure, there are no guarentees but I at least want the chance to feel good. I never feel really good these days. There is pain, shortness of breath, stomach aches, naseau, piles of pills that don't seem to do much of anything, treatments that are unpleasant at the least and very painful at the worst. Its getting harder and harder to maintain my baseline. I know its only a matter of time before I start to decline and things will get even more complicated. So seeing Piper inspired me. I'm going to keep doing what I have to in order to keep these tired lungs as long as I can, but some day I hope to have fresh ones.
Anyway, where was I? I had to stop by my hospital to get my weekly amikacin so Piper said she would take me there. So she even got a glimpse of my hospital while she was in town! While we sat waiting for my number to be called I pointed out staff that I recognize and Piper noticed a CFer. I got to thinking about it later and I realized that I have been admitted at the same time as that CF patient. I don't know who she is though, she didn't seem like she wanted to talk when were on the floor together.
After the pharmacy it was time for me to head home. Piper dropped me off at the bus stop and I got a picture of us before we parted ways. I am SO glad I got to meet her in person finally. She has been a big source of inspiration, friendship, understanding, and support me. For all of that I thank her very much and I hope that she has benefitted from our friendship half as much as I have.
3 comments:
love that you got to see Piper and Lisa and spend the day with them! Favs all around :)
It's always so amazing to meet others with CF, who have walked the walk! I just found your blog. I have also been fighting MAC, along with m. abscessus. The abscessus has been supressed, but I've been working on the MAC for 9 months and it's being pesky. I also take Amikacin, along wit h3 other abx. Hang in there!
aw, such a sweet post! i had a super lot of fun with y'all -- thanks for putting up with my attempts to navigate seattle. next time i get out there i'm going to have to bring the sam-man -- i think he'd enjoy that weather more than hot and humid NYC!
xoxoxo.
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