Monday, October 27, 2014

Road Trip: Take 2


Two of my friends from college (Matt and Kerrie) are now married and residing in London. They have three kids ranging in age from 6 to 12. The family rented a large house in Orlando and had a few extra rooms they weren't using. They decided to share the space with old friends so they could reconnect and enjoy the Disney World parks together. Unfortunately, those old friends weren't available at the time. So, Matt and Kerrie contacted all their other friends to see if there was any interest in sharing a house with them and going to Disney. Their plan was to go during a week when most kids are in school, though, so every friend they asked was forced to turn them down. Desperate to find someone to share the week with them, Matt and Kerrie put an ad on Craigslist and offered to pay any family to stay with them in Orlando that week. Even homeless families. But there were no takers, and after exhausting every possible avenue, the couple reluctantly asked us to join them in Florida. Without a moment's thought for her educational future, we decided to pull Grace out of school and immediately began planning our drive down. Like it or not, the Liebenow's were crashing their Disney party!!

So, I needed a plan for potentially long days walking around the Disney parks with no access to my Vitamix to make my meals. I decided to store all of my breakfasts and a couple dinners in Blender Bottles. The rest of my meals--the ones I'd be eating in the park--would be Real Food Blends. The day before we left, I spent a couple hours preparing my blends. The breakfasts were a mix of hard boiled eggs, sunflower butter, almond butter, frozen mixed fruit, goat yogurt, and green tea. The dinners were leftovers from a chicken, radish and carrot meal I'd made the night before, along with the rest of my frozen fruit. I filled up all of my blender bottles:


Blender bottles are the perfect size for my meals


The bottles were packed in a couple small coolers. I also packed my Vitamix for the other dinners we shared with Matt and Kerrie plus clothes, meds, and my suction machine to clean errant drool out of my mouth before bed--ah, how I miss the days when I only needed one small suitcase for a trip like this. I threw Betsy' and Grace's crap in an old grocery bag (because this trip was all about Team-Brian; who cares what they packed??) and we set out on our journey.


This is the beginning of the trip; that's why she's smiling




Just for fun, we took her to an abandoned warehouse and told her it was Disney World

We set out in the afternoon on Friday. The plan was to drive down to Katie's ("Hey Brian, watcha doin") house in Atlanta, spend the night, then drive the rest of the way on Saturday. The drive down was perfect! No traffic AT ALL. I've never had such an easy drive in my life!!!


Or maybe it looked like this. I'm trying to repress those memories.

Yeah, we were stuck on the Interstate for a few hours and I saw an old man with a walker race by our car. Since it looked like we wouldn't get to Atlanta until late, we decided to stop at a Wafflehouse so Betsy and Grace could eat and I could get one of my blended dinners.

The restaurant was way too crowded, so I told everyone I had Ebola (too soon?)

Fortunately, the next day went pretty smoothly. I got up, had my breakfast blend along with some coffee, and we hit the road. The drive was about seven hours. Halfway down, I had a Real Food Blend at a gas station along the Interstate.

It's much more fun when I do this while I'm driving


We reached Orlando in the afternoon and picked up Grace's older cousin, Julie. She had Monday off from school and her parents (Betsy's sister and brother-in-law) asked if we could bring her to Disney with us for a couple days. Grace was extremely excited that Julie would be joining us!

They began bickering shortly after this photo...they never stopped


A few words about Julie.

Julie is a genius.

I don't mean 'genius' like when I tell people I'm a genius after I've figured out how to put together a piece of Ikea furniture. Sure, it's an achievement. But needing five hours to realize I had it upside down the whole time probably doesn't mean I get to join Mensa.

No, Julie is an actual genius. She recently had her IQ tested and she's up there in the 145 range. She goes to a special gifted and talented school. She is, for all intents and purposes, a smarty-pants. That's what makes the following story so intriguing. Is 'intriguing' the right word? Frightening? Bizarre? Stinky? You be the judge.

When we were living in Colorado, we took care of Julie for a few months in 2007. She was a cute, little two-year old girl doing cute little two-year old things.


What an adorable little angel!!! (Julie's kinda cute too)

She was still sleeping in a crib and we had a hell of a time getting her to lay down for naps during the day. Normally what we ended up doing was put her up in her room then close the door for a couple hours of 'quiet time'. She would just play in her room and no one had any delusions she was doing any sleeping.

Then, one day, I guess she got bored or decided to branch out with her artistic talents. We walked in to find this:


Wait...where did she get mud? What's that awful smell?? Oh my God!!!

No, that's not mud on her crib. The little angel decided to use all material at hand for her art, including the clay-like substance she produced in her diaper. We walked in to a God-awful stench with poop all over the crib, in every conceivable hard-to-reach spot, on the walls. She even climbed out of the crib to decorate the rest of her room. We stood there, stupefied, and tried to take in the sight, the smell, the shear magnitude of the cleaning job in our near future. Julie, just stood and smiled proudly, looking over her handiwork with pride as though it was a quilt she'd been working on that she could finally show off to the rest of the family. She softly uttered one simple word:



"poop"

Part of her handiwork included rubbing feces on some of her toys. Julie had a little dollhouse with dolls representing Aunt Betsy, Uncle Brian, and little baby Julie. I noticed that Aunt Betsy and baby Julie were completely clean while Uncle Brian had poop smeared all over him; as though Julie took particular satisfaction in dousing her dear sweet Uncle with her own excrement.


.
Poor, poor Uncle Brian


What did we learn here? What's the lesson to take away from this story? Geniuses need an outlet for their creativity, and they obviously need sufficient materials or they'll be forced to devise their own art supplies with less than desirable results. We've also learned that my sweet, angelic niece would like nothing more than to rub shit all over me. Don't believe me? Just take a look back at Uncle Brian up there. A good, long look.

Like staring in a mirror--a grimy, crap-filled mirror



So, we finally made it to Orlando, got into our beautiful house, and met Matt and Kerrie's awesome kids. Grace and Matt's youngest child started playing outside and didn't stop playing until they were thoroughly exhausted and needed to come inside for bedtime.


Or maybe they just sat on the couch and played Minecraft

We were ready to start our Disney adventure! Then, that night, the most astounding thing happened. Every person in that house in Orlando came close to death, met alien life forms, and had the most amazing experience that anyone has ever gone through in the history of our species. It all started when--


To Be Continued...

(I've always wanted to do that)







Sunday, October 12, 2014

Buy a Vitamix, Save the World

Perhaps you've noticed the lovely ad depicted on the right hand side of my blog.

RIGHT HERE!!!!!!
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RIGHT HERE!!!!!!


It turns out that I do a little work for the Oral Cancer Foundation (OCF). Specifically, I'm helping them write their section on nutrition and feeding systems. If you have some time to kill and you're really interested in learning more about these topics, check it out (click here). Please give me feedback if you have any (some sections aren't finished yet). I really want to make sure oral cancer patients and survivors are able to make informed decisions about their nutrition. I know I technically had lymphoma, not oral cancer, but there are many people, like me, who have lost the ability to swallow due to the ravages of cancer or the aftereffects of treatment. Far too often, they're given a feeding tube with very little information about how to maintain it and what to put in it. Hopefully, they'll find their way to the OCF website and feel empowered enough to ask the right questions and make the right decisions about their nutritional care.

OCF recognizes that a balanced diet of real, blended food is far better for tubefeeders' health than canned formula. For this reason, they formed a partnership with Vitamix. Now, if you order a new Vitamix blender on the OCF website (OralCancerFoundation.org), Vitamix will donate 15% of the sale to the foundation PLUS you'll get free shipping.

I couldn't say any word of praise about the Vitamix that hasn't already been said everywhere else. Go back to the kitchen of your favorite restaurant and ask them what kind of blender they use. Chances are, it's a Vitamix. You know this is a blender for tubies if it can put up with years of use and abuse in a restaurant kitchen. Do you watch any cooking reality shows on TV? Top Chef? Master Chef? Iron Chef? The Taste? Hell's Kitchen? Food Network Star? Did you notice what brand of blender the contestants use (HINT: it's a Vitamix)? The industry recognizes that there is no better blender out there. The Vitamix will chop, pulverize and liquify ANYTHING you put in there.

It's how I got rid of the bodies of the people I killed

The blades of the Vitamix spin at 28,000 revolutions per minute. The tips are trucking along at over 240 miles per hour (don't stick your finger down there). At this speed, it doesn't just blend your food--it actually cooks the food as it's blending. You could make yourself a hot bowl of potato soup from raw ingredients. On cold days, I can heat up the blend for my feeding tube by letting it blend on high for a couple extra minutes. Don't take my word for the awesomeness of the Vitamix, check out Eric O'Gorman's entertaining blog post about it: Beige and the Attack of the 28000rpm Dentures.

To summarize go to your kitchen right now and grab that old Black & Decker / Hamilton Beach / Kitchen Aid piece of crap that you got 15 years ago that time you thought you'd make margaritas every night. Take it straight out to the trash can because it's not good enough to be donated to the poor. Then click that link over on the right side of this blog and treat yourself to a machine that does it all. You'll get free shipping and help the fight against oral cancer at the same time.

Thursday, October 2, 2014

Jesse's Ride of the Century

Spoiler Alert: He rode 81 miles. 

WOW.  Jesse Jones (I did a blog about him earlier. He is the founder of DrinkYourMeals.com) took part in a 100-mile bike race in Hawaii and rode 81 miles. He is on supplemental oxygen, has limited use of his left arm, is unable to talk above a whisper, and eats through a feeding tube. He set a goal of 75 miles before the race started. Jesse rode 81.  

I can't help but compare this feat with my own fitness challenge earlier this year. I took part in a 60 mile hike, had a goal of 26 miles, and only managed about 16. I can only hang my head in shame and reiterate how proud and inspired I am about Jesse's race. 

Sidenote: I was extremely chagrined that I forgot to contribute to Jesse's fund to help cover the extensive costs for him to take part in the ride (sorry Jesse!). But I'm very happy that he met his goal and one of the people who helped push him over the edge is his friend, Princess Abigail, who is a member of Hawaii's royal family. The royal family who would be ruling Hawaii today if they weren't overthrown by two businessmen from Germany and Great Britain...Ok, ok, plus five American businessmen; but I'd rather gloss over that and focus on the German and the Brit here.

Anyway, Jesse gives all the details of his amazing ride far better than I ever could (though I couldn't help adding some humorous captions to his pictures because I have no shame). Here is his message:


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Aloha Friends & Family,

Up at 3 AM on Sunday and got to the starting line at 5:15. It was still dark. Over 2000 cyclists showed up to do the Ride. It was a very festive spirit. Someone from the Mayor's office spoke, the police chief spoke, and we had a Hawaiian prayer and the National Anthem was sung. At 6:15 AM the first Group A was released. I got permission to start in the A Group to give me maximum time. As it turns out I needed it. Groups B, C, and D were released at different times.

Drum roll - I rode 81 miles! I'm amazed at myself! What a day! We got real lucky in that it was overcast all day. At one point we were in a downpour for about 30 minutes. Believe me we didn't mind at all. The weather here in Honolulu has been a lot warmer than usual - in the 90s. Even paradise is affected by global warming.


It's not a real bike race if you haven't been lei'd...that came out wrong


I had 12 hours worth of batteries for my portable oxygen. I had packed three 1 Liter drip feed bags with 400 calories in each one plus one with electrolytes. Andrea my trainer carried one for me in her backpack.

We saw at least two different couples riding a bike for two. We saw two fathers riding with their young sons. I saw at least one young girl riding. The strangest thing we saw was a guy riding an elliptical that had been turned into a bike. That looked exhausting to me! He did pretty well. I saw him at the final turn around.

We were also lucky that we had no flats or bike problems. We saw many people along the way, mostly flats. Some people had to rest by the side of the road because of leg cramps. I did pretty well. No cramps, no aches or pains. I guess the endorphins were working for me! Every hour I stopped to hydrate and/or pee if I needed.


Looking Good!


I've told you I use a Hilltopper which lets me climb hills without huffing and puffing. I still have to pedal but it feels more like I'm pedaling on flat ground unless the hill is very steep. It operates on a battery and has a range of twenty miles. We got to the the second of the last two big hills in Hawaii Kai and the battery ran out! So I had to do the last hills by stopping often. Fortunately it takes me only a minute to recover and then continue on.


"Wait...this isn't oxygen...it's Nitrous Oxide!!!


When I picked up my registration packet on Saturday, one of the volunteers recognized me from the newspaper article and said she passed the info on to a friend who just finished surgery for esophageal cancer. If you live in Honolulu you might know Ted Tanaka. His wife Nancy got in touch with me and we're going to meet so I can give them info on tubefeeding. I am grateful that what I'm doing can inspire and encourage cancer survivors during their journey through the maze called cancer.



The picture on that sign is from my blog. So I did contribute something to the race.


I am grateful for the love and support I receive from each of you. Love of oneself, love of others, love of life. That's all that really matters don't you agree?

Nalani Kele, you are the love of my life. Your caring, all the little things you do to make life easier for me, your smile, your hugs, your kisses make all of this worthwhile. Thank you for being on this journey called life with me. 


Nalani is amazing! She's stood by Jesse's side through all his hardships




Is it just me or does he get more lei's in every picture?



Big mahalo to all those who gave to my gogetfunding campaign. I'm excited to report I reached my goal of $5,250. Thank you to Princess Abigail and Gail Worth for putting me over the top! I am honored to be called your friend.


Not sure who is the Princess and who is Mrs. Worth in these pictures. Or these could be complete strangers.


Pretty sure Jesse was just thinking about going home to take a nap at this point




Jesse is very fortunate to have so many lovely friends and family



My dear friend, Mahi Beamer, lives in Kailua. He is physically challenged with his lungs and is on oxygen 24/7 like me. As it turned out, the bike course went right by his street in Kailua. So I told him I would stop by for a few minutes to visit. We had a nice brief visit with him and Gaye. As I was getting ready to leave, TC, who was there taking pictures, presented me with a plaque from Princess Abigail Kawanakoa, designating September 28th as "Jesse Jones Day". I was humbled by the beautiful words that were written. I am blessed!






This is awesome. Unfortunately, every day in my house is "Grace Liebenow Day"


I am ever so thankful for Jay and Jayne Kim and staff at Eki Cyclery. I couldn't have done the Ride without the special attention you gave to making the bike work for me one handed and being tubefed. 

I am forever indebted to Andrea Rudder, the trainer who put in long hours with me without asking to be paid more. Andrea, you a trooper. Thanks for cracking the whip when I needed it! Your can do spirit lifted me many times.


The trainer for my hike was my dog and he's lazy, so that's my excuse


I arrived at the finish line at 4:30 PM just before the 5 PM deadline. I had expected to arrive about 3 PM but the breaks were a little longer and at the end more frequent. There is definitely a finish line high! I was thrilled to be greeted by my friends screaming and waving the "Celebrating Life" flags. Chad, the president of the Hawaii Bike League, announced me as I rode in. Nalani had befriended him and told him my history. It was all so special. Thank you so much for patiently waiting for me to arrive Bev, Kristel, Marmie, Wally, Ruth, Jerry, Cris, Doris, Dave, Linda, Kaui, Patty and Harry. A big thanks to Harry for providing the photos. Cris, Doris, and Dave are from my monthly Head & Neck Cancer Support Group at Queens. Great Warriors! David Goto, also from the support group, surprised me by being on the side of the road in Kaneohe with his motorcycle. He went with us to the turnaround.


SO COOL!!!!




Crossed the finish line with a shaka sign and a smile



Peace, love and joy always,

Jesse



You're amazing, Jesse!