My dear friend Lizzy took this photo and has been carting us around. She sat with me. With Cliff. Cried with us and been so fully engaged in this experience. Lizzy. I. Love. You. Oh so much. Thank you for spending part of your only vacation helping us. I had a dilation today. In plain terms my doctor (who I really appreciate and love) made what was a small breather hole much bigger by good old fashioned skillful brute force. I have a sore throat and can take a really full deep breath. It feels like a gift.
I'm sitting alone in my hospital room at Mass Gen. Cliff has gone back to our dear friends house to get some proper rest. I can tell you overnight in the hospital is not fun. Overnight sitting upright in a chair to sleep is just unkind. I'm glad he will have some alone time to process all of this and eat a bowl of cereal with almond milk (his comfort food of choice lately).
There's a pulse ox monitor taped to my right index finger making it super tricky to hit all the right keys. To my left a wicked view of Boston has been filled in with the night sky to my right an empty bed (yay). All around me are sounds of the hospital. Incessant beeping. A slight creak of the machine monitoring my iv fluids. Nurses chatting as they walk past. All the nurses have been amazing. Though I don't want to get too comfy I feel as at home as is possible thanks to their stellar care.
It's been a DAY.
This moment is actually kind of perfect... I think anyone who's ever been in the hospital or negotiated any kind of sickness whatsoever (or made a really big decision on your own) can totally relate to this feeling... this is happening in my body. It's a singular experience. I'm completely surrounded by the best kind of love and support and a growing community of prayer warriors and yet in this moment I feel alone. Me and this busted up trachea.
I had hoped it would be a thin little membrane of scar tissue growing over the old surgery site. The completely sucky part is that is not the case. The scar tissue is thicker than ever and has invaded the space near my vocal cords (that's not good) so that means a second resection is off the table. That's where they cut you open and cut out the scar tissue. Not fun (understatement) but I had 3.5 good years of breathing after.
What I'm learning yet again is that wellness is a dance. I'm currently on the dance floor with western medicine checking out his best moves. He's stepped on my feet a few times, I've smiled politely as if to say, 'oh that's ok' but I've taken note. Really we're trying to do a dance that he doesn't know the moves to. This condition is so rare and almost no progress had been made in the six years since my big surgery. But here we are front center throwing our arms up and going for it. I'm doing that signature white girl step-together-step, little bounce with slight head bob, a clap and a 'wooooooo-who' every now and then for effect. Sometimes I smooch my lips out and wrinkle my nose like I'm totally cool and confident and throwing off that -- 'I'm doing this on purpose' vibe. Can you see us out there?
Oh do I have surgery stories to tell...
There was the gal who was here for my resection in '08 who was in the room again today. I recognized her. She recognized me. So nice to see a friendly face. And she seems like someone I'd be friends with so that's always a plus.
There's the guy on the cleaning crew in the OR area. He is probably in his 50's, he is thin and kind. Faded tattoos peek out from under his scrubs on both arms telling stories of his younger years. He walks like he's going somewhere. He's the kinda guy who points when he talks, only pauses for a second and then keeps going. Today marks my 4th time in the OR at Mass Gen and the 4th time I've seen this same dude! So today he walks by and sees me sitting in the gurney outside the OR waiting my turn and he says, "I was just where you are not that long ago." He points at me as he's talking, gives a little squinty half smile and then goes on his way. It puts me immediately at ease. For a moment I wasn't just a body on gurney I was a person who was being seen by another person who had felt what I was feeling and had BEEN THERE. I giggled as I realized that he says that to me every time. I'm pretty sure he says that to everyone and he probably takes a nap on the gurney as often as possible so that it's actually true. Still I totally appreciated it.
Then there was a women on my surgical team. A nurse I think. She asked me what I do for a living. When I said I'm a health coach she did as many people often do and launched into telling me her story about food and her life. I'm so glad she did. She grew up in West Africa eating traditional foods (grains, fruits, veggies, meat when they could afford it) and was naturally thin and healthy. She said they ate breakfast and lunch and maybe a small dinner or no dinner at all. There was no snacking if there was ever a snack it was a banana or an orange. They never asked for food, they only came to eat when called. She preferred to play and was happy to come in to eat but was never hungry or worried about food. She was happy to play -----> that's Primary Food! The best example of being fed from the richness of your life, from being fed by play and not needing as much food to eat. She is now a little overweight and knows it's due to eating fast foods and processed foods and adopting the Standard American Diet.
She took her children to visit her home several years ago. Her son was 8 years old at the time and overweight. After eating the traditional foods and chasing goats up the mountain each day he released all the excess weight and his body has normalized into it's natural size and shape. He's 11 now and he says he loves his new body. I thanked her for sharing some of her stories with me. Recalling them now I feel a little teary.
I love my job. I love my life. I love that people share their stories with me and I'm so deeply impacted by the power of food and feeling good in our bodies. That's what I KNOW. And that's what I'm returning home to inside myself. My next dance on my healing journey is going to be a tribal dance with water. Think body paint and big sweeping moves around a fire. Soulful. Ritualistic. Deep. We got two thumbs up from my doc to go and do a medically assisted water fast in California in September. Apparently I'm seeking all my healing experts on the coasts. East coast medical. West coast spiritual. Sounds about right. You know I love a good food experiment so we'll see what the absence of food does. It's meant to reset all your cells to allow the body to heal itself, by itself.
I'm seeing how intentional the call to simplify was those months ago. We heard it loud and clear. I proud of us for listening and acting. We now live in an RV which still kinda blows my mind. We're calling it Kale On Wheels, our big bus of healing (we also call her Barb. Short for Rhubarb which makes me giggle.) and it feels like we're fully engaged in a quest of healing. We set this whole thing up (the RV, selling all our stuff, down sizing, simplifying) before we ever had a clue what it would really become. I'm sure it's all still unfolding. Betcha a year from now this clarity I'm feeling will probably just amount to finding a corner piece on a really big puzzle. And while I'm still having a hard time wrapping my brain around the fact that I'm back here in a hospital bed using words like stenosis, I'm practicing presence. This moment is really all I've got and honestly it's all I can focus on. The minute I start thinking thick scar tissue and vocal cords and and and the tears start flowing and I'm sucked into the dark and scary place. I'm using all my best tips and tricks that I'm constantly sharing with my clients. I sat in recovery feeling utterly green (nauseous) from coming out of the anesthesia saying over and over "I inhale. I exhale." And it worked. It was the slowest two hours I've experienced lately but it worked.
Alright dear friends I have selected a movie to watch, a girl movie. Cameron Diaz and Leslie Mann in The Other Woman. I'm thinking escapist comedy is exactly what I need. Me, these ice chips, all these beeps and this little iv are going to cozy in.
P.S. I actually started blogging in 2008 post tracheal resection surgery. I'd had a Caring Bridge page to keep family and friends updated and I loved posting updates there so much that when I closed that page I started a blog. It's a full circle moment. There have been lots of those this week. Some very tender and tear filled, some truly spirit lifting. This post is really more of an entry into my virtual moleskin. Since I'm feeling quite alone sitting here in my standard issue hospital socks (they're the worst tan color you've ever seen but they do have that handy no skid stuff on bottom) and gown (would you like to see my bum, everyone else has!) I'm sharing my entry here because the internet really is remarkable and if you're reading this you're my people and I love you. And if you've been following along and sending me love I want to tell you I literally feel it. Words will always be an inadequate for the deep gratitude I feel. T H A N K Y O U.