Friday, September 26, 2008

From Houston

Yesterday was Captain Adorable's worst flight ever. Sigh. It really wasn't that bad, I guess, but it seemed awfully hectic to me, while I was working hard to keep my unhappy-and-yelling-about-it-boy entertained and quiet.

Anyhow, we went to see the oncologist at M.D. Anderson today. Got some different answers than we got from the oncologist at Johns Hopkins, where I am a patient. (I mean, I'm a patient at M.D. Anderson, too, but you know what I mean (I think). I go to Johns Hopkins all the time and I've only been to M.D. Anderson twice.) Armed with this new information I feel much more decisive and a bit more hopeful than I have felt in a while. As far as I am concerned as of right now, I will not be doing chemo this fall. (That of course could nobody, including me, should get too happy about this.) That does not mean that chemo is off the table, because with metastatic disease and multiple growing nodules, I need systemic treatment (and chemo is systemic treatment). However, for the moment I am convinced that pursuing a clinical trial would be the best choice for me.

I am attracted to the clinical trials in immunization. They have not been terribly successful yet, but imagine how great it would be if we could get my body to fight the cancer for itself! And of course by using my own body, perhaps I can avoid some of the damage that standard-of-care treatments (including chemo) cause. If it would work, it might be a chance to have a long life (or, the chance to die of something other than cancer...). Of course, as I said above, although it is promising, so far it is not very successful. Still, I am interested in finding out more about the study and evaluating whether it would be a good option for me.

Thursday, September 25, 2008

Biggest One Yet?

I am overdue for an update here, sorry! Just have so much to write about that it all has to percolate in my brain before I can get it down here to share with you. However, I have something cool to share with you. Check it out:

I would like to announce another addition to the growing club of dear friends and family members who have gotten a tattoo in my honor. My friend Mr. Unobtrusive, who lives in Tennessee, surprised me yesterday evening by sending a picture mail to my phone of his beautiful new tattoo (you can see it above). I think, based on the pic, that his is the biggest one yet! It is also the first one to be completely black. Very cool choice, Mr. Unobtrusive! Very cool. :)

Wednesday, September 17, 2008

Chilling Out In Tennessee

Captain Adorable and I are chilling out at my parents' house in Tennessee. It is so nice for him to be here, where he has a huge yard (an entire hill!) to run around in and all the other joys of country life for a child. Captain Obvious is at a meeting for work, so he is missing out on all the fun (too bad for us because we miss him!), poor guy. At least he can join us for the weekend.

Last night my Dad made a fire for us (well, really for Captain Adorable) and it was great fun to sit on the grass and watch the fire burn. Captain Adorable loved every second of it! He was enchanted! Here's a photo of me and my little son--I was sitting facing the fire and he was climbing on me as if I were his own personal jungle gym (oh wait, I AM!). The photo above was taken during a moment when his joy was so great that simply lying behind me was delicious fun!

Monday, September 15, 2008

From The North East Corner (Practically) of Tennessee

The Captains and I left Maryland on Saturday and arrived here at my parents' house in the north eastern corner of Tennessee on Saturday night. It is so peaceful and relaxing here. We miss the ocean, though. My parents' tattoos are way nicer in person!

I am losing my hair.

Friday, September 12, 2008


I went to visit Ms. Resourceful today and to my surprise and pleasure, she was sporting a new tattoo! You guessed it, she added an infinity symbol to her collection. She got it on the inside wrist of her right hand! Check it out!

The best part is, she actually got it on September 2 and later realized that that day was my birthday. How cool is that?!

Thursday, September 11, 2008

We Are In Maryland

The Captains and I are home. I think I can speak for all of us when I say we are not thrilled to be in Maryland (and therefore no longer in Hawaii) but we are all very happy to be home. Both cats are healthy and happy to see us.

We're leaving again on Saturday for Tennessee!

Wednesday, September 10, 2008

Last Night in Hawai'i

I am sad to write that tonight is our last night in Hawaii (or, Hawai'i, as it is more properly written). I am writing from our room in a big resort on the big island. When I say big, I mean effin' huge; this place has not only a monorail but also a boat system with several stops each for guests to get around the hotel complex! As it happens, that game show Wheel of Fortune is being filmed here at the moment! Not sure if this is a one time shot or a week's worth of shows or what...have not seen either of the show's famous hosts, though. (Not that I would care, to be candid!)

Anyhow, let me back track a bit and take you through our last few days. When we left our lovely rental house on Sunset Point, we said goodbye to my brother and SIL at the airport. They went back to Seattle and we went on to the big island. Our luggage arrived on the same plane that we did, thank goodness. ;) We drove from the airport in Kona to our hotel in Keauhou Bay. It was a low(er) rent resort, but it has what we expected (a kiddie pool for Captain Adorable to play in) and our whole little family had a good time getting tired out playing in the giant, almost empty, pool. Later that evening we went out to dinner at a famous place called Huggo's. The food was good but not super and of course the vegetarian choices were inadequate at best. Oh well, Captain Adorable got to eat a bunch of shrimp and scallops (obviously so did Captain Obvious) and it was lovely to sit by the water and eat dinner. After putting Captain Adorable to bed, Captain Obvious and I sat on the balcony of our partial-ocean-view room and had a bottle of wine. It was rather romantic!

The next day we got on the road early to get to the volcano. It was a 2+ hour drive (never fun for my little one), but we all survived. We dropped our bags off at our Bed and Breakfast (if you know me in real life you might know that both Captain Obvious and I hate B&B's, so it was weird that we were staying in one, but it looked so damn good on the web site!) and we went to the park (minutes away). The volcano is amazing. Really, truely unlike anything I have seen before. Fascinating. (I have no pics to post right now, but I will, I will, as soon as I have a chance.) It was more interesting and dramatic than I expected it to be. That afternoon we went back to the B&B to rest and poor Captain Adorable was unhappy and loud and was tired, so therefore was difficult to handle for two tired parents. Then he also burned his hand on the towel warmer (I had no idea those things were so HOT or I would have had it turned off!) and cried loudly. Well, the neighbors were giving us dirty looks later on...and I felt kinda bad about it, but it was 3:30 IN THE AFTERNOON when all this noise happened, so I did not think too much about the matter.

We drove down to see the lava flowing into the ocean--another hour+ drive, poor little Capt. Adorable, but he did sleep for most of it, so that helped a lot. It was very exciting to drive over lava fields on the way to the parking area. The anticipation was building as we got closer and closer and the giant plume of steam from the ocean (and the edge of the island) got bigger and bigger. We parked the car and walked down to the viewing area, which was a cool walk. Of course there were a ton of other folks there, and everyone had a camera (Capt. Obvious had two and I had one, so I am including myself in that last statement!). Captain Adorable was in the carrier (Ergo) on my back, so he was safely contained, but he was not calm enough for me to sit down. I had to continually move and find new vantage points from which to view the action. He was very interested in the lava and the steam, so that was cool to see him experience. Plus, he loves waves, and we were right close to the edge of the island, like I said, so right near where we were, the waves were crashing into the coast of lava cliffs. Night was falling--it is best to view in the dark as it is most dramatic then--and the moon (a bit larger than 1/2) was shining above. At one point I looked from the firey, steaming lava-falling-into-ocean part to the beautiful moon, and then my gaze drifted to catch the sight of a wave crashing into the lava cliff and splashing the very top onto the surface where we were standing. It sounds so cold and overly described here, I suppose I am not being very poetic, but it really felt...hmmm, what is the word? It felt naked, primal, ancient, new, rough. It felt like it had nothing to do with humans or human time. It was beautiful. That said, I wish we could have been closer. It was much harder to see the actual lava than I had hoped.

But night was falling, we had stupidly not brought flashlights, and Capt. Adorable was restless, so we decided to walk back to the car. Once back at the hotel, I noticed a piece of paper on the floor with our names written on it. I thought it was a nice note from the staff to welcome us to the place. I was partly right, but the real point of the note was to inform us that our neighbors had complained about the noise our son had made and that we should keep in mind their thin walls this evening. I was shocked and angered (mostly because I was hurt). It made me nervous and super/hyper worried about any noise AT ALL that we made. Captain Obvious had to leave so that I could put the baby to sleep (and also because he wanted very much to take pics of the caldera at night since we were told it glows! Yes, pics of that later too...). Well, of course Captain Adorable (over-tired and grumpy from being in a car All Day) cried and yelled at this event. I was sooooo stressed, trying to calkm him down quickly. It was awful (fortunately, my son is easily cheered, and I distracted/redirected him by getting him to look at the fire, which was a gas stove, in our room, while I held and walked/rocked him to sleep).

Later, when Captain Obvious got back, we sat out on the balcony (huddled in long pants, socks, jackets, and the provided robes on top of all our clothing against the cold) and shared a bottle of wine. We talked in whispers, fearful that anything we said was overheard or interrupting someone else's vacation. I was stressed about this, too, and was unablew to really relax into the moment. My darling sweet husband finally got out the headohones and the mp3 player and we sat, rocking in unison (each in a rocking chair), and listening to music together (each with one ear piece). He played me some new Bob Dyland, and that put him in a certain mood, so he played me the song we danced to at our wedding (Little Trip To Heaven by Tom Waits) and we both cried. He cried more than me (probably because my stressed state prevented me from fully experiencing emotions). I stroked his hair (we had our faces pressed together cheek-to-cheek) and stared off into the dark, wishing that I could make it better for him. Then I tried to change the mood and insisted I play a song. I chose Iris Dement (a favorite artist of mine) but stupidly chose a sad song (which we have joked about being a bit over-the-top sad in the past) and my darling husband only cried more.

We slept badly, woke early (6:15), and left as soon as we could. I think it was 7:30 when we were finally in the car. Whew!

We stopped at a little place and bought coffee for Captain Obvious and banana bread fresh out of the oven for all of us to share (apparently banana bread is quite a thing here) and then we drove back into the park. We had a look at the lava tube (who knew that was so amazing?!), the art gallery near the visitor's center (got a necklace for me, a vase for the shelf, and a little kona wood carving for Marik (someday I will give it to him, I promise...).

Then we drove here. Captain Adorable slept almost the entire way, thank goodness! Once here we ride the monorail over to the tower our room is in, discovered that our balcony over looks the dolphin pool, ate some lunch, let Captain Obvious have a power nap (20 mins) and then went to the pool. We had a wonderful time playing in the water, ordering drinks, and generally enjoying ourselves thoroughly. After that we rode a boat to one end of the hotel and back (pretty romantic, really!), and now here I am, full of a yummy (but lacking in protein) dinner, about to finish up this loooooooong update and go sit on the balcony with a bottle of wine and my beloved husband.

Tomorrow we will get to play in the pool for a couple more hours before it is time to drive to the airport, fly to Honolulu, then to Houston, and then to Baltimore...

Probably the next time I will get to update this I will be a continent away from where I am now. I have been filling up my eyes and my head with beautiful sights and precious memories to carry me through the tough slog ahead. Captain Obvious is already talking about trying to organize a bit of a family trip to Las Vegas during the chemo sure would be nice! We will see if we can convince my parents to do something they have never done before...hopefully we can get Captain Obvious' aunt and uncle to join us as well. We will see. This has certainly been a wonderful, wonderful trip. It would be great to revisit this frame of mind from time to time, especially as an escape from chemo.

More Beautiful Body Art!

My gorgeous parents went and got tattooed on Sunday! I called to say hi when I was standing at the edge of the caldera in Hawai'i Volcanoes National Park (because I had not called for a while) and my Dad told me the good news. However, I was not able to get online to check my email and post about it till tonight. I am sure, if you have been reading, you will understand that sometimes a vacation can prevent blog posting. :)

Here are the pics!! Mom first (Loooooove that blue!)

Dad's is on his arm (the green looks fab against his skin, does it not?):

I am going to see my parents only 3 days after I get home from this trip and I really look forward to seeing them in person! Maybe we could do something crazy like a family tattoo portrait...who knows?

Saturday, September 6, 2008

Another One!

Well well well check this out! More breaking news from Europe! Someone who has known me since, I suppose since I was in utero, decided to join in the tattoo idea. As you can see from the pic above, she incorporated a rose! :) Isn't it beautiful?!

I am sad to say that today is our last full day on Oahu. Our last day to play here on the North Shore. Captain Obvious rented a surfboard yesterday and he and my SIL and my brother all tried it out. I was sleeping with Captain Adorable, so I missed out on all the fun. (Boohoo!) Surfing is definitely physically demanding, and they were all tired. I think Captain Obvious is getting another surfboard today, so I will have the chance both to try surfing again and to snorkel and play at the beach, since we are all going to hang out together today.

Yesterday evening we all went down to the beach to look at the moon and the stars. You can see so much more of the beauty of the night here than at home in Maryland. (so much less light pollution). I took some pics of the stars and the moon but none of them turned out. It was wonderful to sit on the beach in the dark and hang out with those gorgeous celestial bodies in the sky above, the reflection of the blazing moon moving on the sweet little Captain Adorable even got in the water (just in one of those little pools by the water's edge that are here)! Here's a pic.

Friday, September 5, 2008

A Photo From Yesterday

Even though I was worried about Trout, I did go to the beach and enjoy myself. The Captains and I went to the beach close by our rental place (it is right down from Sunset Beach) and the locals call it Mama's Beach because it is shady and has small waves. Both Captain Obvious and I did a little snorkeling (there were lots of pretty fish) while the other one stayed on the beach with Captain Adorable. It was very nice and relaxed. Above is a photo of me and Captain Adorable in the water.

Thursday, September 4, 2008

Good News Update: The Cat Is Found!

I am very very very pleased to update this blog with the news that Trout was found! He was hiding in an upstairs closet, safe and sound. Thank goodness. Our vacation just got good again! :) :) :)

Bad News From Home: Our Cat Is Missing

We have 2 cats: a small black short haired one (Pigletta) and a large grey long haired one (Trout). Before Captain Adorable showed up they got huge amounts of attention, love, petting, and patience. They are both sweet animals and their company is restful. Since Capt. Adorable's birth they have been rather ignored and pushed to the side, but they continue to be sweet and to seek attention and petting. It is obvious they like to be part of the family. Trout in particular has put up with a lot of abuse at the hands of my curious toddler (who recently had been absolutely determined to sit on the cats...).

Today we received word from the friend stopping by our place mid-week to feed and care for the cats (we also have a friend coming by on weekends) that Trout is missing. She checked the entire house and there was no sign of him. I think that he got outside on the deck on Sunday and my friend must have forgotten him out there. I am afraid he is dead. I love my kitty and I want to help him and I am so far away! This sucks!

We sent our friend a pic of him and she will post Missing Cat posters with a small ($25.00) reward. Perhaps we will find him again. I am afraid to hope, though. I do not want to have my heart broken.

My beautiful, furry, snuggly Troutie!! Please come home!

Tuesday, September 2, 2008

Recovering From Surfing Lesson

Here's a pic of me on a surf board. The surfing lesson was fun and it was quite a rush the few times I actually stood on the board! A great way to celebrate my birthday. However, I must admit that it was more physically demanding than I had expected. We had a 2 hour lesson and I went in after 1 hour because my face was getting burned and my shoulders/back were extremely tired and my foot was hurting. I hurt my foot on my first wave ride because I put it down on the bottom into a bunch of coral and it got bruised and cut. Not a great thing to happen when you are trying to use that foot for balancing on a surf board! Don't let my complaints fool you. I had a good time and I am glad I did it. Unfortunately Captain Obvious did not get one with me standing on the board...but my brother caught it on video, so I am looking forward to watching it when we are home.

Today I am 35!

Yipeee today is my birthday. :) And I am in Hawaii with my family. As if that was not enough, my SIL and I are going to take a surfing lesson this morning. How cool are we? Good way to celebrate a birthday, I think--by doing something have never done before.

I will write more later. Perhaps even post some pics.

Monday, September 1, 2008

Labor Day at Waimea Bay

We tried to get to Waimea Bay early but we did not get there early enough. Parking was extremely difficult, so Captain Obvious had to spend a lot of time in the car searching for/waiting for a spot. I guess the parking is usually bad there, but seeing as it is Labor Day today it was even worse. Of course some fucking bitch stole the first spot that he had scoped out and waited for, but he was able to get another after waiting another eternity. He waited a total of an hour and five minutes before he could park!

My brother, my SIL, Captain Adorable and I had actually packed up and trekked all the way back to the parking lot, thinking that it was taking so long that it was not fair to Capt. Obvious and we'd just go to the beach near the house we are renting (we're staying on Sunset Point, if you care to look it up on a map--Google Earth will give you an excellent view). Sunset Beach is very very close by...but Waimea Bay is so famous we wanted to go check it out. Anyhow, we had a great time. Waimea Bay is one of the most famous surfing beaches in the world because in the winter, which is October to April, the waves there are 30+ feet! However, at this time of the year the waves are not 30 feet so it was safe for all of us to get in the water and paddle around. My brother and my SIL did some snorkeling. Captain Adorable got the play in the water and the sand with both parents. I got to sit in the shade of the umbrellas we brought from our rental house. There was a lovely breeze. People were relaxed. There was good entertainment, in the form of people watching. It was niiiiiice.

We had hoped to head to Matsumoto (suggested in allll the guide books and also by a regular reader of this blog) for some shave ice and then to some close by restaurant for lunch, but the place was so crowded (it being Labor Day and all) that we said forget it and just went home. We got off the beach at about noon. I think we all avoided sunburn through the dedicated application (and re-application) of sunscreen, resting in the shade of the umbrellas, and leaving before the sun got too crazy...

So, Hawaii has a lot of Japanese tourists. I love them because to my American eyes they are super weird/unusual in funny or weird or cool ways. For instance, as my SIL and I were rinsing off before getting the in car to go home, a cute little Japanese woman approached the showers (outdoor showers, very primitive). She was dressed to go out to dinner at a five star restaurant. She had on a gorgeous silk ruffled mustard-gold skirt, a beautiful little white blouse, and super nice satin and leather high heeled shoes. She was seeking to rinse her little feet and of course to my eyes she looked ultra ridiculous. I was just thinking to myself "ah, yes, Japanese tourists," when my SIL turned and saw little miss silk skirt. The look on her face was one of total amazement and it struck me as so funny that I loudly snorted with laughter. Oh well...hopefully silk skirt did not realize that it was her who caused my laughter...