Hello my people.
I realize that most of you have no idea what’s going on because I haven’t written for so very long and there is so much to tell you. I also realize that I’ve been hiding out. But I am doing the best I can with what I’ve got, just like everyone else, so I’m stepping out into the light a bit. Only the people that have seen me in person know what I look like and I have requested the no photos of me to be posted on social media because I am pretty self conscious.
THIS IS ME.
This picture above is it. It’s the deal. I look a little busted up and worse for the wear but it’s truly a lot better than I had originally anticipated and has healed sooooo so so so much. In the scheme of it all, I am very fortunate and I need to constantly remind myself of that because this is what I will look like for another few years given that reconstruction has been postponed (but I’ll get to that in a minute). Those close to me say that once they start talking to me and are reminded that the essence of who I am is still the same, everything else falls away. Strangers, however, often stare and that is really, really hard. I definitely have a difficult time separating myself from that. It’s hard to brush off but I can usually just turn and walk the other direction, take some deep breaths and keep going. I have had moments in the market or out somewhere where I have thought “I’m going to count to 5 and if I look up and you are still looking at me I’m going to come over there and slap you silly” but I manage to keep it in check most of the time. Not always. I was driving in the city the other week and stopped at a light when a man pushing a stroller looked over at me, elbowed a woman he was walking with and then she looked over and they started laughing. Who does that? What adult does that? So I did what any other person that has read every spiritual book under the sun and spent 10 years meditating would do: I rolled down my window, yelled “you’re an asshole!” and drove away. It was not a shining moment but desperate times called for desperate measures, my friends, and in that moment I was doing the best I could.
It’s tough when kids that don’t know me peer out from behind a parent or, as I experienced the other night in a restaurant, a girl walked past me, stopped, and then turned around to come back to make sure she saw correctly and then moved on but I know that they just don’t understand. The children in my life that have had a little prep conversation before the first time they see me and know they can ask me absolutely anything have been nothing short of absolute rockstars. Quite precious and hilarious, to be honest. They don’t skip a beat and still come bouncing out of the house with a big hug or snuggle. I was Skyping with my 6 year old friend and she was right up to the screen and I was tilting my iPad under my nose because she wanted to see what was going on up there. Her mom was silently hysterical in the background and I was trying so hard not to die of laughter but obviously I didn’t want her to think that there was anything wrong with what she was asking so I managed to stifle it, but I sure did have a good laugh when we hung up. Another one was giving me a much needed makeover and after the eyeshadow and blush she got to my lips and was contemplating how to go about the situation. She put lipstick and gloss on the bottom lip (because that’s all there is) but was obviously not thrilled with it. After a moment of problem solving she put her hands on her hips and said “can I just draw another lip on?” These kids are too much and I love them. A few weeks ago my 3 year old friend was laying down with me and we were almost nose to nose and her eyes widened and she said “Well, did the tooth fairy come while you were sleeping and take all of your teeth out of your mouth and leave you some monies?” I told her that she did just that and left me about 5 dollars, all the while thinking to myself that I’m an idiot for not chasing that damn tooth fairy down the street, tackling her and shaking her down for every dime she has. That same sweet little lady told her babysitter about my visit and said “she looks different but gives the same hugs and I love her.” And THERE YOU HAVE IT. Goodnight, everyone. I look different but i give the same hugs. 3 year olds know what’s up. They hold the key. I look different but I give the same hugs…what a beautiful statement about life, right? We all look different and we all give the same hugs. Lord almighty may we all take a page out of her pure and sweet little book.
So the face situation is definitely taking some getting some used to but the other thing I’m getting used to on a much more trivial level is this hair!! It’s growing! How about those curls, ladies and gents? They are literally called “chemo curls” bc so many women have little ringlets that they never had pre-chemo. It's like Shirley Temple meets Marcia Clark, am I right? AM. I. RIGHT? I’m right. I know I'm right and I embrace it and whatever. It's fine.
I mentioned earlier that the reconstruction is postponed and here’s the deal with that. The upper jaw that they have created from the fibula bone in the leg is serving it’s purpose and allows me to eat without the feeding tube and drink and talk but it is not enough. They had to take so much bone out that the new jaw is basically too small and sits too far back, giving me a significant underbite (you can probably see that in the pic above) even when teeth are added in the end. Sooooooo they have to go into my hip and take more bone that they will then graft onto what is there now. I know…the WTF level is through the roof at this point. For healing purposes they want to wait until a year from this December to get started and then it will be a year start-to-finish until I get teeth, so I am going to be looking like this for quite a while, people. We’re looking at 2018. Twenty. Eighteen. That is a lot to digest. I started this at 37 and will hopefully wrap it up by 41. Still wondering if this is actually real life…
Despite that nonsense, I am grateful that I am starting to actually enjoy things more than I have for a while. I had a wonderful week at the beach with my family in July and went in the ocean and rode a bike (!!!!!). Guys…the bike. This is a big deal because my left leg is still healing and since having chemo my balance was so, so bad for so long (my sister mentioned wanting to walk behind me to hold me up by the back of my pants so I wouldn’t tip over) that I was certain I was going to fall and crack my head open so I didn’t even bother trying. But I’ve been doing the Livestrong program at the Y to regain strength and endurance and balance (it’s for cancer peeps so if you know anyone in that boat tell them to look into it because it is life changing) so I decided to give it a go and I literally shot out of the driveway and once I was on the bike I couldn’t figure out how to get off so I just kept riding! For about 15 minutes I rode around the neighborhood and it felt so wonderful to be normal. To just ride a bike around a beach town like everyone else does. So then when I was tired and had to get off and couldn’t I decided the best thing to do was to ride up on to the beach and fall over where it would be soft. You can totally picture me doing that, right? Well I didn’t, but it would have been pretty hilarious if I did! I actually managed to get myself off with only a few minor bruises but it didn’t matter because I RODE A BIKE!!!
One of the most joyful experiences that I have had in a long, long, long time happened in June when my dear friend came to give a concert here in Philly at the Merriam and she so generously invited me to come up on stage and sing. I had a lot of family and friends there to see her and had no idea what we had planned so surprising them was the best part! That audience just embraced me with open arms and it felt so safe and comfortable and it was exactly where I was supposed to be in the very moment. We all get glimpses of that, right? Even in the midst of difficulty or grief or tragedy there are times when you realize that perfect moments still come along and shine beneath the rubble. It was a gift that I will hold so dear to my heart for the rest of my life and I don’t know if anyone will ever know how big that moment was for me. Even I don’t know how big that moment was for me. What I do know is that I let people see me that night. I stood on a stage in front of hundreds of people and I didn’t hide and I can tell you that that is not an easy task these days. The gratitude I felt that night for the audience and Kelli and Seth for giving me the opportunity and my doctors and nurses and family and friends for getting me back on my feet was overwhelming. It still is. And I’m grateful that I showed up for myself. Here’s proof that it actually happened: https://www.youtube.com/watch?v=otOt8-5iPq0 And I took my most beloved nurse as one of my guests so having her there was just so special. She was one of those nurses that was in the trenches with me when I had that long hospital stay post-surgery. In the middle of the night when I would be crying about the possibility of not being able to sing again she would say “You can do this. You will get well. You will be on stage again.” BLESS HER. Perhaps the most beautiful part of the whole thing was the number of people that shared the video on social media saying that they were inspired. That, my friends, is a wonderful gift. From that sharing I had a cancer surgeon reach out to me via Twitter to say that as a doctor he lives for moments like that and will use it as an example when talking to other cancer patients facing life changing surgery. It doesn’t really get better than that. The video also was shared on Facebook by a college friend which led to an invitation to sing the National Anthem at a Penn State men’s basketball game in January! To sing for my alma matter at a venue like the Bryce Jordan Center is kind of making my head explode!
So things are looking up:) Today I am being swept away by my family for a trip to Ireland and London and I am so looking forward to it. I am a little nervous and feeling like I should be jumping back into the rat race before the recon surgeries throw me back out again but my tribe is rallying around me saying “Go. Go live your life for a little while. Enjoy this time. You’ve been working harder than you ever have in your life and there is more ahead so go now. You’re allowed to be excited. We’ll hold you by the back of your pants so you don’t fall if you lose your balance.” So I am going to go and nurse my spirit a bit. It’s just starting to recover from a long and tiring journey with a ways yet to travel and I think that getting away for a few weeks will be good for me. And I couldn’t have better travel companions! We are going to laugh and drink beer and sing and drink beer and sightsee and drink some more beer just as my great, great grandparents did.
This lass can’t wait!
Wish me luck.
Love to all,
p.s. I’m going to take this moment for a PSA encouraging all of you amazing parents and grandparents and teachers and nannies to please find a few books for your kids that talk about people that are different from them. Any difference at all. As someone on the receiving end of stares and pointing, I cannot encourage that enough. (I’m going to make it super easy for you: http://amzn.to/2bXfcug and http://amzn.to/2btLnyV). I thank you in advance for having the conversation:)