Month: July 2006

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A Gift of Life

Hi Stacey,

We went camping this past weekend–you know how we rough it.’We had a campsite right on the river and saw many pods of dolphin. We also saw some manatee. The river was a wonderful 72 degrees. It was a fun time with Sherry and her family. The girls got a National Parks Monopoly game at Mammoth Cave when we were on our way home from Kentucky and we had fun with that. Bonnieli went to jail nearly every time she passed that space. It was almost impossible to land on it so much. She was a good sport about it, but as a result of spending most of the game in jail she didn’t end up with any property or money. In this game, you put up tents instead of houses, and get ranger stations instead of hotels.

You won’t believe this, but when we checked in upon arriving at the campground there was a woman wearing a Lewisville, Looievile, etc. t-shirt. and another woman in the office had a green donate life bracelet. Of course, that started quite a conversation. The woman with the bracelet was the mother of an organ donor. Her son was 16 years old and a website is set up for him and his organ recipients (www.agiftoflife.org) The mother’s name is Candy Heaper. She was at the Transplant Games, and is already planning her trip to Pittsburgh in 2008. She is saving $$ for the trip. She has a jar in her house that people have to put their change in when they visit. She said if they don’t have any change, they have to put in a dollar. Hmm, creative fund raising. She has met 5 of the organ recipients and said it has been very helpful for her healing process. I talked of you, of course, and told her that you hadn’t met your donor family yet and her advice is that you should do it.

I told her about the photos of you with your guardian angel. She said she has a picture of her son with the light on his shoulder. He was sitting at a table with the blind closed and the light came through the blind. She said she took her daughter’s picture on the same chair, same blind closed and there was no light.

I keep missing your phone calls, but I re-play your voice messages again and again just to hear you.

Didn’t we have an awesome time in Kentucky’ That was really special. All those cousins!! It is too bad you didn’t have time to hike the trails. Sherry, the girls and I couldn’t get enough of the hiking. Well, one trip we could have skipped…the one where Sherry and I got totally lost, and soaking wet in the downpour. That didn’t stop us, however, we even did more trails at Mammoth Cave. You will see some of the trail photos when I get all my pictures over to the Kodak Gallery.

Love you, Auntie Marion

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We Survived the Heat Wave

Greetings from California, the land of 105 degree temperatures or higher…record highs that caught the whole Bay Area by surprise. It was so hot, we could barely move. Hardly anyone had air conditioning, and stores quickly sold out of fans and ac units. I survived by frequenting air-conditioned places: the library, the shopping center, the grocery store and the posh Pacific Athletic Club.

Temperatures are back to a normal 75 degrees this week…what a relief! We can go back to living!

Mom, thanks for stopping by my site. I received your pictures on CD. I really like them!

Alyssa, we will have to go on another climbing trip now that the weather is cooling off.

Felix, it was great seeing you recently and I am glad you are back home safely in Colorado.

Andy, thanks for telling that adorable story of us as little ones. Isn’t family fun…

My next project is finding a substantial job. I have been checking job openings every day, and sending out resumes. I am most interested in working for a non-profit organization, a newspaper or magazine, or a gym, but I may apply for business administrative assistant positions as well. If anyone has any ideas for me, I am open to suggestions. (I have heard that the best way to land a job is through connections.) Please e-mail me if you have any ideas.

I have been working out regularly, trying a little of this and that. On Mondays, I climb with the women from my sheclimbs club. On Tuesdays, I play badminton. On other days, I climb, take walks, or go to the PAC club for lifting weights or swimming. Both Ana and Isa are members there, too. They do three times as much exercise as I can do, but it’s fun all the same.

Climbing in the gym is going pretty well; the other day I was able to work my way up a 5.11d, with three rests on the rope. It’s satisfying to strive to do well at something. I am climbing at a level only one number grade below what I used to climb before I got sick, so I’m kind of pleased. I wasn’t sure how athletic I would be after the transplant.

Yet, aerobically I am still very limited. I have noticed that I can really feel the difference when I swim or even walk fast for exercise. (I took a walk around Shoreline Park with my friend Rene yesterday.) I cannot jog even once around a track yet without stopping. There is so far to go in terms of improving my health. I still cannot live the active, athletic lifestyle that I used to do before my illness. I stay home while my friends take climbing trips, backpack, travel, work overtime, etc. Yet everything is relative…I am better off than Dave.

My friend Dave remains in the ICU, after a second surgery on his small intestine. He wavers in his voice and has trouble breathing. I talk to him every day on the phone and try to remember what it was like to be in the ICU. Each little act of kindness was so important, every little sprig of hope was useful. Last year, when my own breathing became labored and I was in the ICU myself, I pretended I was climbing Mt. Everest. I traveled my journey just one step, one breath at a time, and stayed focused directly on what was necessary. It was not even a time for fear. There were no “what ifs.” It was just a time for focused, patient action.

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andy (stacey cusin

many people cann’t remember any thoughts prior to 5 years of age, but i remember may 3’s and even have a memory from my 2’s. my first memory is the day i met stacey i remember?the couch along the west wall of our living room, brown and ugly. laura entered the living room from the front door with stacey. all the adults gathered around the baby (not me stacey) everyone was getting a turn holding the baby, my mom my dad laura, dont remember if glenn was their (there are limits to my memories), but i keep saying i want to hold the baby, and i was getting ignored by the adults, and i was getting more worked up about it until someone, maybe my sister sherry said “if you want to hold the baby you have to sit on the couch, which i promptly did. they i repeated my self until i got my chance, i remember laura saiyng are we ignoring you, and someone placing the baby in my lap!

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visit memories

Dear Stacey, Oh, yes, what a wonderful?time?. .?the magic you make with stir fry. . .Delicious!! You are generous in reporting my badmitton skills. Your technique on the court makes me?think you’could have been named? Hawk Eye. The guardian angel photos inspire!! I’ve shown them to Hindus, Jews, Christians and Independents.?Everyone recognizes The Light. Another wonder caught?on film is you doing the splits high on the climbing wall. And what fun eating popcorn under the blanket of colors Denise sent. ? Love, Mom

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A Visit from Mom

On Wednesday, July 5th, my mother came to visit me here in the Bay Area. She arrived at night, and it was the first time she had seen the apartment all set up; she was delighted.

The next day we went to the hospital for me to get my monthly octreotide shot…it was a little painful this time because they went in twice. While we were at the hospital, we stayed for the monthly heart/lung Stanford patient support group.

It was our chance to talk about the Transplant Games. It was a great experience and sharing pictures and triumphs made it all the better. We also saw our friend Lara, who just recently had a transplant and is doing very well. She was two weeks out from the transplant, and speaking slowly and carefully, but she was there!

Thursday night we went to our favorite Japanese restaurant in Mountain View, where I used to live. Mountain View is an interesting city with a diversity of shops in the downtown area. At a tea shop, my mother bought a beautiful automatic tea pot. Later, we attended a lecture at the East-West bookstore by Marc Allen titled, “The Lazy Type Z Guide to Success.” I figured it is a good place to start for me…I just hope the principles work.

Friday night, I climbed with my friends at Planet Granite Belmont. My partner for the night was Kara, and a few other sheclimbers were there as well. Climbing is going well for me these days. I am up to on-sighting 5.10c on top-rope, only one number grade below what? I used to be able to do before the illness. I have been red-pointing a few 5.11a’s, and completing 5.11’s and some 5.12’s with falls.

On Saturday, I played badminton with my new friend Helen. Actually, WE played badminton with Helen…my mother jumped in and started hitting the birdie back and forth, too. With a little practice, she started hitting some good rallies. I was so happy that she could enjoy the game, too.

During her visit, we also saw my friend Angela at Ray’s Tea Time in San Carlos. She welcomed us warmly, and showed us how to do a Chinese tea ceremony. We were very grateful for the delicious tea and the lesson! After our tea ceremony, we took a walk at Waterdog Lake together. It was peaceful and wonderful to spend time with my mother just relaxing rather than worrying about my health. On the way back, my mother took some photos of me that amazingly showed a glowing light on my shoulder. Psychics have confirmed that it is my guardian angel showing up on film.

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4th of July Climbing Epic

Greetings, blog readers! I apologize for the lack of posts lately; a lot has been going on in my life these past few weeks.

Tori, thank you so much for setting up this new blog! I really appreciate the time you spend on the website.I hope to be in touch with you soon.

After coming home from the Transplant Games, I had to sleep a lot to recover from all the excitement and activity. But on the 4th of July weekend, I headed to Mammoth Lakes, which is on the other side of Yosemite.Howard, Eva and I rode together for the six-hour drive, and met Dave and Mark at the condo.

On the first night in town, we ran into Hannah and Lucas, from our home gym in Belmont! We all headed out to climb at a spot called Al’s Garage the next day. It was extremely hot, and the approach was a short but very steep hike, walking up dirt piles and scrambling up rocks, sometimes climbing at a 45 degree angle.

When I arrived, Lucas had already set up a 5.11a, and I jumped at the chance to do a challenging climb on top-rope. Next to me, Dave was lead-climbing a 5.10b, and had come to a crux…looking around for a handhold, and then all of a sudden–a BIG fall! He swung out from the rock in an arc, and slammed into the wall–his leg stuck straight out–shattering his ankle! We called Search and Rescue, and when they arrived with a stretcher about two hours later, 20 people helped carry him out. SAR took him to the local hospital. We all packed up and headed to the hospital, too.

He had emergency surgery that night. Things seemed to be going okay, although Dave was in pain. While I was in the hospital, I checked my oxygen saturation level. It was 90%, precariously low. I decided to wait to see what happened. At 90%, most doctors prescribe supplemental oxygen.

The next day I spent with Dave in the hospital, keeping him company. He was tired from surgery, but recovering okay. Then I checked my saturation level; it was 85%! I had a choice of checking myself into the hospital as a patient and arranging for supplemental oxygen, or leaving the area (an elevation of 8000′) as soon as possible.

That night, I left with Hannah and Lucas, and we enjoyed a long, but relaxing ride through Yosemite National Park. We stopped at Olmsted Point and took pictures of the sunset and Yosemite Valley in the background. We arrived back at home at 1 a.m.

Meanwhile, Dave was having further troubles after the surgery, and was airlifted to Kaiser hospital in Redwood City, near his home. It turned out that he was having acute kidney failure! Now the broken ankle was the least of his problems.

After two weeks in the hospital and some dialysis treatments, Dave made it through. He is now recovering at his home in Redwood City, and learning to walk on crutches.

If anyone would like to send a card, please let me know.

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Stacey’s New Journal

In a very belated celebration of Stacey’s new lungs :d here is a much needed new and improved online journal and guestbook!

Stacey’s orignal journal, which covers her journey from the beginning in October 2003 through July 2006 (wow!), can still be found HERE as an archive.

Want to leave a note for Stacey?
It is just as easy as before, you just have to Register the first time.
A password will be emailed to you automatically after you register. Then simply Login and write away!:d

And help support her site by checking out some of the sponser links!!

(@) -Tori

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Note from Stacey

Here is a picture of Isa and Rupie on our walk to Waterdog Lake on Thursday. They are such dear friends. Isa, it was a true dream come true to attend the Transplant Games with you and Ana. If you have any cool pictures maybe you could post one? Michelle, great to hear from you. The years havejust flown by since Denise’s wedding! Wasn’t Europe exciting? Denise, thanks for the excellent picture and cute note from Sophie. I was so happy to see you at the Games. Mom, what a wonderful entry. Thanks for describing the essence of the Games so well, and what it meant to us. There was an article in the San Mateo/Redwood City Daily news about Ana, Isa and me and the Transplant Games. It is a very nice article! If you are interested in a copy, please e-mail me. – Stacey, from Belmont