Marc and I just got back from a long weekend in DC. He had a commitment for Reserves and we decided to do a little house hunting in DC as well as spending a night with friends in the area.
Many people have asked when we are going to leave for our big trip or head out in an RV. I had posted earlier about our plans to travel. Maybe March or April? Right now we are trying shorter trips while I recover from surgery and get stronger.
Two big challenges for me with regard to travel and my life in general are speaking and eating. When we went to Cape May last month I never said a word in the B and B to the manager or to other guests. I felt too self conscious about my voice. When it came time to eat, I only ate in the room. Eating cans of medical formula through a feeding tube had me feeling WAY self conscious.
This past weekend we spent a night with J and J, Marc's college roommate and his wife. This was our first time socializing with friends since my second tongue surgery. My first tongue rebuild from my wrist in November was good for speaking. I wrote about going to a Christmas party in my neighborhood with it here. This latest tongue rebuild from my thigh (with over 90% of my real tongue now lost to cancer) makes it very hard for me to talk. I feel self conscious and unsure at times if a word I want to say will come out the way I want it to.
But surprise, surprise - over the weekend I had a good time visiting with J and J. There were a few times I had to repeat myself or look for other words, but I felt comfortable at their house. When we stayed in hotels and went to look at places to rent in DC, Marc would tell each leasing agent I had just had oral surgery and that my speech was temporarily affected. I then just asked whatever questions and spoke as best as I could. Usually I was understood.
It takes a lot of effort to talk. It's often stressful - but I realize I've been harder on myself than other people have. I miss my voice and the ease with which I could talk to anyone. Maybe one I day I'll be able to stop comparing the voice I was used to hearing in my ears with the one I hear now.
As far as eating goes, I'll post soon about what it's like use a feeding tube inserted into your stomach. (I don't have the kind that goes through the nose.) I was worried about using my feeding tube in public at first, but then I tried a cafe mocha at the Au Bon Pain by the hospital. I sat in a chair with my back to most everyone and found I could discreetly pour my mocha into my tube without anyone really seeing a thing. I figured that people working at the hospital would be familiar with different medical conditions anyway.
On the trip this past weekend, I tried venturing out even more. First came a drink at a The Improv Comedy Club in DC. We found a table near the back. The club was dark and everyone was looking at the stage. I casually had a Jack Daniels down my tube while watching the show. The headliner, Donnell Rawlings, was hilarious. Even though the place was packed no one was aware of my tube use.
After that I gradually got bolder. I had coffee with a can of formula while Marc had lunch at a cool restaurant near Dupont Circle. Marc requested a booth by saying, "My wife just had surgery and has to use a feeding tube. Could we have a booth?" The host said, "Absolutely, no problem." Marc enjoyed lunch. I enjoyed lunch. And no one noticed a thing where we were sitting.
Another night we sat in an out of the way corner table at the hotel bar and I had a martini. I have never been a heavy drinker and I'm sure alcohol is not good for people with cancer, but those couple of drinks and time out at clubs and restaurants did a lot to help me feel normal. It's fun to go out, after all.
Here are a few pictures from the trip:
This was my cute date in my kind of hallway - large and floral. (I wouldn't have been able to do a post without flowers.) This is the underground at Crystal City. All of the halls are lined with oversize flowers. The odd contrast was that most of the people walking back and forth had on army fatigues:
A picture under my favorite museum, The Hirshorn:
A window view of the Mall in DC from my favorite lounge in the Hirshorn. The lounge, on the third floor is one of the best in Washington and features large comfy black leather sofas to sink into. I used to spend time there in high school if I wanted inspiration and art on a weekend.
And then a few "aw, how cute" pictures from a trip to The Frying Pan Farm, a working farm/museum near J and J in Herndon, VA.
The little birds in the barn were hovering over these sleeping piglets:
Our house in the snow when we got back home:
Lisa,
So good to read a new blog post from you! As usual, it was completely inspiring. I loved hearing about your trip and the progress you've made with feeling more comfortable talking, going out, and most especially - eating, and drinking whiskey and martini's (you go girl!) :)
Truly, I can't even imagine how hard it must be, but you seem to tackle everything with such positivity and grace. You are, as ever, AMAZING!
Love,
Jenny
Posted by: Jenny Scott | 02/03/2011 at 11:06 AM
Lisa,
So glad to hear that you are having fun going out again - You definitely deserve that! I think you look wonderful and when I saw you a couple weeks back I think you sounded great too! I can understand you being self-conscious, but don't be so hard on yourself :) I haven't checked your posts for awhile because, honestly, once I start reading, I find myself re-reading many of your older posts too - they are so well-written, warm and honest - and then I can't get anything done :)
I've never been able to drink whiskey, so the next time you have one, have an extra for me!
Love,
Patty
Posted by: Patty | 02/03/2011 at 01:15 PM
Sounds like a really nice trip! Smiled at the idea of the martini down the feeding tube! :)
Posted by: Ann | 02/03/2011 at 11:06 PM
Your voice never sounds the same as the way you hear it. Sometimes I leave a message for Grace on the home phone. mWhen I hi the play button when I am retrieving messages and hear that " jersey accent", I am always taken back. Ahhhhh
Washinton is such a great place to be. I wish the weather was warmer for you, but it sounds like you enjoyed a nice visit with friends, anyway. The cherry blossoms should be out in a couple of months. Jack's daughter lives in Arlington, Va., so we have had many opportunities to see D.C. We also like Old Town in Alexandria.
When do you think you will be able to start tasting food. like when you are having a martini through the tube, be able to put a little on your tongue? Do you have ANY taste buds?
I would like to come for a visit, or welcome you over to see my new cherry red sectional, which of course didn't make it down the cellar stairs, but has found a nice corner in the family room.
All i do all day long is give tube feedings, so you don't have to have a booth here. You can belly up to my kitchen island.
Grace has some photos from Longwood that she would like to share with you. If you haven't been out in awhile, it is a mental feast....so refreshing in these cold dreary days. Just a reminder that Spring is coming.I'd love to take you any friday if you would like to go.
Keep looking up!
Dana
Posted by: dana darnell | 02/04/2011 at 02:07 PM
Hey Seestah,
After talking to you on the phone yesterday, believe me, you sound really good and I could understand almost every word: you're kickin' butt!
As for the feeding tube... all my friends and acquaintances over the years felt NO embarrassment or compunctions whatsoever in whipping out their boobs in public restaurants and cafes to breast-feed their babies. So why not be able to whip out the feeding tube? I think nourishing yourself is just as important as nourishing a baby, so just go for it: whip it out! Enjoy that liquid lunch and especially the martini! :)
I loved the birds and snoozing piggies photos! I think I'll print and frame the bird one.
love, hugs,
Ellen
Posted by: ellen gorsevski | 02/05/2011 at 01:28 PM
I love your pictures, and your date is cute! But then, I have always thought Marc really cute! I agree with Ellen, a feeding tube is no different than a boob. Enjoy your martini, or whatever you feel like putting down the tube at the time. I am sure your voice is different, but I have never liked mine on recordings. Perhaps a change is good! People who don't know you will know no different. And those who do know you will be thrilled to hear from you.
All my love, Liz
Posted by: Liz Hartnett | 02/05/2011 at 09:16 PM
Here here, Liz! I couldn't agree more.
Posted by: Jenny Scott | 02/06/2011 at 11:50 AM