Blogging from the skies again!
As usual, I’ll make one quick recap post about my time in New York to keep my medical journey up to date. On Saturday, my mom flew with me to New York once again for my second bleomycin treatment with Dr. Berenstein. This was a much more intense session than in May leaving me pretty swollen (no post-op selfies, oh darn.) But we are taking that as a sign that the medicine is working, attacking what it needs to attack :)
My procedure was moved to Mt. Sinai Hospital on the Upper East Side which is a great deal further from the apartment we typically rent. So we had our first experience with the Ronald McDonald House in Manhattan.
My expectations of the RMH were, well, none. I pictured a dorm-like facility with hospital patients and their families, similar to the Pediatric Intensive Care Unit inside the hospitals. My dad even suggested we book a hotel instead.
To say that we underestimated the quality of the Ronald McDonald House would be an understatement of epic proportions. So now I want to do a little rave about our stay here because I was blown away by the beauty of the house, surprised by the comfortable atmosphere, impressed by the service of the staff, and really touched by all of the extra amenities offered to myself and all of the other guests.
It has such a positive energy. I don’t mean to sound hippie-earthy. It’s just immediately obvious that the building is so positive and inviting. Not filled with sickness, but full of hope. The common areas and guest rooms were Bright. Happy. Fun. Look at the gorgeous garden (1 of 3!)
We are so impressed by all of the work that is put into maintaining this non-profit organization. The companies that sponsor and donate as well as the actual RMH staff that organize everything have really done an excellent job at maintaining an outstanding facility. This was truly more impressive than any hotel around. In addition to providing rooms for families, we also appreciate:
- The donations that keep a constant supply for a coffee cart, cereal and pastry bar, fully-stocked pantry, catered dinners, and nightly events like ice cream socials and luaus.
- Cute field trips on the Hope Mobile to museums and parks around the city
- Adorably-decorated rooms (seriously, my mom wants to take the furniture home.)
- Sweet care packages for patients – I love my Burt’s Bees lipsticks & Essie nail polishes.
- AOL Media lounge with all the technology, a music room with every instrument, a gorgeous terrace with a garden and fountain 7 stories above the Upper East Side, and a Green Room on our 9th floor that is equally beautiful.
- The cleanliness of the facility.
We all want to “give back” when we have the opportunity to do so and I’ve always felt that I needed a cause or organization that I was actually connected to. Because of my short stay at the Ronald McDonald House, I would love to some day be able to do something for this organization on a large scale – like catering monthly dinners (although maintaining the daily coffee cart would be much more my style, huh?)
The real reason we were there, though, was my procedure with Dr. Berenstein. This was my second treatment of bleomycin injections. After I am under anesthesia, the team of surgeons uses ultrasound technology to observe the blood vessels in my cheek and inject the medicine directly into the veins. This round was more intense than the one in May. The doctor targeted two areas, just underneath my eye and next to my mouth. I woke up feeling nauseous and uncomfortable with a sore throat from the breathing tube. I just wanted to get out of the hospital gown, out of the noisy PACU, and into my own cozy room at home. After I was able to digest some food (I opted for my own Blueberry Bliss Luna bar over their turkey sandwhich) we were able to leave the hospital after about 10 hours.
Yes, that is Chubby Hubby Ben N’ Jerry’s. (On a health blog?! SCANDELOUS!) Hey, my parents have instilled a reward mentality in me since infancy. If I don’t cry during my IV, I get ice cream. It worked at age 4 and it still works at 21. :) My mom and I had the ultimate girlie day recovering in our room with ice cream and grapes, “Saying Anything” and Gilmore Girls.
Oh I can’t forget about my recovery room “roommate” back in the PACU of Mt. Sinai hospital. I’m laying in my bed, counting down until I can be released, when I hear a neighbor rolled next to my curtain. He is disoriented and hysterical. The nurses gently remind him, “you’ve just had surgery. Leonard. LEONARD!” He removed the monitor on his finger, the sleeve on his arm, and even the monitors to the vitals machines. One of the nurses was less than enthusiastic about re-connecting this aggitated patient who didn’t seem to understand where he was.
Next thing I hear: “HE PULLED THEM OUT AGAIN! I JUST put his monitors back on and he’s pulled them all off!” Next they brought in the big guns ….. a male nurse stood by the bed making sure Leonard behaved. Leonard did not behave. Turns out Leonard is a little promiscuous and began undressing himself when the female nurse returned. Her reaction? “See what I do to these men? They just want to take their clothes off for me.” Guess this is a daily occurance in the good ole’ PACU.
The nurse continues to remind him that he just had surgery, he is in the hospital, and he needs keep his (damn) clothes on! Leonard is very confused. He keeps asking if he is dreaming. It takes a few nurses to calm him down and keep him from removing the monitoring devices yet again, asking him questions like “Who is the President? What year is it?” He answers. “Obama. 2014.” And then a panicked, “Am I right?!?!” Yes Leonard, you are in the right year now close your gown.
As per doctor’s orders, I am off cardio exercise for a few more days until the swelling dies down a bit. Guess the Gilmore Girls marathon can continue :)
P.S. A little late to the party, but this girl finally joined the Insta-world! You can find me on Instagram @stronglikemycoffee :)
One quick follow-up on my procedure and then I will return to this blog’s intended purpose: health & fitness!
At some point, the fun had to end. I checked into the hospital for a new procedure to continue improving the venous malformation on the left side of my face. We met with my surgeons once more to discuss the plan of attack. Dr. Milton Waner and Dr. Berenstein founded the Vascular Birthmark Institute and pioneered treatments and equipment that is now used all over the world. They are the best in the field, hence our travel across the country to see them.
I do like to include medical information about my procedures on the blog. Before my surgeries, I would Google and search for other people with similar circumstances. I would have loved to connect with others who have undergone similar treatments, but never had any luck. Maybe this will help someone doing the same! So just a quick break-down of the game-plan because it’s a pretty complex process (that will be *hopefully* completed by this time next year!)
- 2-3 more rounds of sclerotherapy with Dr. Berenstein, using Bleomycin injections into the remaining malformation.
- Laser treatments with Dr. Waner to attack surface veins and reduce the visible purple coloring.
- “Smoothing” the left side to decrease bulkiness and fill in depressions.
- Creating a more symmetrical smile! Medical technology is amazing. Dr. Waner and Dr. O use a procedure to re-animate the nerve and muscle function around the left side of my mouth to increase it’s movement. They will use a sensory nerve, artery and muscle from the area around my Achilles tendon, and implant it like an “extension cord” to create symmetry.
I have to do some of my own research to see how using the tissue from my leg will affect my running. Another option is using a cadaver. Yes, creepy. Don’t think about it too hard, that’s what I tell myself ;)
Last week I had the first Bleomycin treatment. Cross one procedure off of the list!
I *politely* requested he use the underneath of my elbow (<— does that body part have a name? I’ve never had to refer to the “underside of my elbow” before..)
I woke up feeling alright. No major pain or nausea, and I was able to go home later that night after recovering in the pediatric unit. A Sex & the City marathon was playing (how appropriate!) and my parents brought me a peanut butter smoothie to fill my empty belly.
I just have to say a public THANK YOU to my amazing supportive parents. Two of the most caring and generous people, I am blessed to call Mom & Dad. I love you so much :)
During our week in the city, we balanced Healthy Choices and Happy Choices. The latter would be splurges on ice cream, cocktails, and special dinners because…..well, because WE CAN.
My parents and I are all glad to be home and return to normal, healthy home-cooking. One saving grace was staying at an apartment with a kitchen. We didn’t have to rely on restaurants for ALL meals and snacks (although stocking a kitchen in Manhattan is still pretty damn pricey).
We packed a fruit and hummus picnic to take to the always-gorgeous Bryant Park:
We made pretty parfaits to fuel our walk through Central Park with yogurt, banana slices, apple chunks, and a crumbled Toasted Nuts & Cranberry Luna bar.
We made a Whole Foods stop for movie snacks, where I picked out some delicious “Cacao Blueberry Raison Coconut Almond” clusters. Should be pretty easy to recreate…every ingredient is in the title. :)
Can’t finish this New York recap without mentioning the 9/11 Memorial Museum. By Friday, I was feeling good enough to trek down to the newly-opened museum. It is located underground, directly below the sights of the twin towers. Several layers include actual architecture from the buildings, thrashed fire engines, video and audio clips, and thousands of pictures from the day that our nation will never forget.
And that concludes this New York trip. Tomorrow morning we reunite with LA Fitness. Can’t wait to get sweaty again :) I shall bring you many recipes and workouts soon!