Sunday, August 31, 2008

Breaking News (From Sunset Point)

The Breaking News first: my Aunt got tattooed! Here's a pic she took of herself for your enjoyment.

The house we rented is nice. I can't see the ocean from our bed, but I can see it from the dining room table (where I am sitting now). There is a plate of breakfast food in front of me (my brother cooked it). I am going to eat it now.

Saturday, August 30, 2008

Off To Oahu

Yesterday was marvelous fun! We rode a little tourist train (the Sugar Cane Train) and Captain Adorable loved it, just like I thought he would. Then the Captains napped while I went to the beach and the pool alone (!!). While I love to float in the ocean and feel my body bob up and down with the waves, I did not stay in for long because I get so out of breath so quickly that it scares me. So, I lay in a hammock for a bit and then went to the pool. I decided to go down the adult water slide (150 feet) again and it was so fun I did it again and again. I think like 6 times in all. You know I had to really enjoy it because it is a loooooong climb up all those stairs, with me panting the whole time, just to get up to the top.

Then I downloaded all our pics on to my laptop and had a great time looking at them. Then I woke up the Captains and we all went to the pool. Captain Adorable loves that little water slide so much! We took some good action shots and hopefully I will be able to post them when we are in Oahu.

Yes, we are leaving for Oahu this morning (another 22 minute plane ride). We will stay on Oahu for 9 days at a house we rented on the beach. The best part is, my brother and my sister-in-law are coming to join us! I have not seen my brother in almost a year (he came to Maryland from Seattle to visit me after I had lung surgery last September). I am very excited to see both of them and I am very excited for them to meet Captain Adorable. Well, my brother has met him, but my SIL has not. Should be good times.

Friday, August 29, 2008

From Kaanapali

We are staying at a resort hotel at Kaanapali beach here in Maui. I have never stayed at a hotel like this before and even though of course I know all the things wrong with it (environmental impact, for one), it is really nice. There is a huge pool with a giant area just for kids. The kiddie pool has very shallow water (1.5 feet at the deepest), teeny pebbles/big sand to play with in the water, floating soft plastic dolphins and stationary turtles to climb on, and a water slide that I am allowed to go down with Captain Adorable. The first day we were here I spent 3 hours at that pool with him! There is also an adult pool and an adult water slide, but the kiddie pool is so much fun I only went down the adult slide once!

Yesterday we drove the Road To Hana, which took longer than I thought it would, so we were away from the hotel for over 12 hours. Of course, we stopped and got out to explore multiple times, so we were not sitting in the car all that time, but it did take far longer than I would have liked. We wanted to drive all the way around the island, but the road at the southern end of eastern Maui was closed due to falling rock(!) so we had to turn back. Bummer. Captain Obvious rented a convertible for the trip, so we were armed with sunscreen and hats. We even convinced Captain Adorable to wear his hat for long periods of time. :) I was really glad we had it, especially when he was sleeping. The convertible is a lot of fun and certainly made the beautiful scenery all the more accessible. That road is kinda crazy and a little dangerous, though! We drove from Kaanapali to Kuapo and back. Here's a map in case you are interested. If you click on the phrase "View Larger Map" (located beneath the map) you will see a larger version of the map, with the route we drove indicated.

View Larger Map

I had read that there are no restaurants on the road, so yesterday we had a picnic lunch that we picked up at a natural foods store in Paia. Some crusty bread, chevre, hummus, and a prepared cold soup (kale and cucumber) from their deli. We ate sitting on the beach of a beautiful little lagoon. (I think that's what it would be called...) Delicious!

We had dinner at a Vietnamese place called Fresh Mint (also in Paia). It is a vegan restaurant, and I was rather disappointed at the very small amounts of tofu in the dishes, seeing as I have not had a solid protein portion since we left for Hawaii. I guess I am going to have to make sure I eat some rice and beans for lunch or something. That's the bad side of this hotel--the food is extremely over priced. So much so that we are not eating at the hotel! There is a little fridge in the room, so we have some things from the grocery store down the road.

We are still fighting jet lag, but all three of us are doing well. Last night we did not put Captain Adorable (who did not have one pee accident the entire day on the road and is now a pro at peeing outside, thank you very much) to bed until 9:00 (Hawaii time) and I fell asleep with him, leaving Captain Obvious awake and alone with a bottle of wine in a dark room in which he had to be quiet enough not to wake us. Poor guy! Oh well, hopefully I can make it up to him tonight. There is still half a bottle of wine left!

This vacation is a marvelous escape and I am enjoying myself immensely. However, I had hoped for total escape and cancer keeps creeping in. I still have to remember to take my Tarceva and all of the self care associated with being on a drug like Tarceva. I still have fears and worries about starting chemo again. I still dwell on thoughts like "I wish I didn't have cancer."

The airline we took from Honolulu (on Oahu) to Kahului (on Maui) sent our baggage to the wrong island and we had to wait over 2 hours for it to arrive. When the baggage person told me this, I burst into tears. Now, granted, I was exhausted and frustrated, but really the news she had for me was not that bad. Of course, little did she know that inside me was also the thought that every second I was wasting in that stupid airport was not only a second of my Hawaiian vacation wasted, but also a second of the very precious life I have left. Yeah, yeah, I think positive, don't get me wrong, make the best of every experience blah blah (had a lot of fun with Captain Adorable looking at and identifying all the vehicles that drove past the airport "Car!" "Truck!" "Bus! Bus! Bus!"), live the eternal moment, but damn sometimes when your luggage gets sent to the wrong island the idea that your life is way too short to spend in a grubby airport baggage claim area crashes down on you.*

Ah well, my plans for today include the pool and the beach with my son and my husband. :) And probably some drinks. :) :) Definitely some drinks! :) :) :)

* Because the car seat was in the luggage, you understand, so although Captain Obvious was able to go ahead and get the rental car, Captain Adorable could not leave the airport. Yes, we could have rented a car seat from the car rental place, but it seemed stupid to do so for only an hour.

Wednesday, August 27, 2008

From Honolulu

I am here in our bargain basement hotel room (hey, we're only stopping here for the night--off to Maui early tomorrow morning) lying on the (queen-sized) bed with Captain Adorable. Captain Obvious is off buying some bottled water and juice for tomorrow.

I am happy and proud to report that Captain Adorable made it through waking up at 3:45 am, two flights (a 3 hour flight from Baltimore to Houston, and then a 7:30 hour one from Houston to Honolulu: three naps in total), a minor flight delay, and a hotel shuttle ride with no pee accidents! OK, he did poop in his pants (actually was wearing a diaper at the time, thank goodness) in the President's Club in Houston, but he told us he was going to poop before he did it and while he was doing it. Neither parent made a move to take him to the potty because in my experience it just delays the inevitable and today we needed him to just go ahead and do it. :)

Even after the flights, we have had him in just underpants beneath his clothes and no accidents! This evening I had him in a disposable diaper because he sleeps in a diaper, and he was playing a bit and pooped in his diaper (no announcement this time, only a remark afterwards). So, tonight he's sleeping in a cloth diaper with a water proof cover! Hopefully he will (as usual) wake up dry since we have only one cover with us and it would be best if he could have it on for the plane to Maui tomorrow.

Flying first class was WONDERFUL. Captain Adorable was very well behaved and drew admiration from all corners. He did cry a bit, but was not too too loud and he was only crying because he was tired. He went to sleep soon and then resumed being his usual delightful, quiet self.

Monday, August 25, 2008

Leaving Tomorrow!

Whooo Hooooo! Our plane leaves at 5:40 tomorrow morning. We're off to dreamland at last. We bought a new suitcase yesterday and I have been busy packing the one Captain Adorable and I share all day (we're taking two: a big one and a medium sized one). The bad thing that happened today was I dropped my mobile phone in the toilet. Yeah, it is completely dead. So, if you try to call me, you'll just get voice mail because I won't be able to answer.

Next post will be from Hawaii!

Thursday, August 21, 2008

Another Second Opinion

Captain Obvious got me an appointment to see the oncologist at M.D. Anderson on September 26. Twenty-four days after my 35th birthday. Two days before our (sixth) wedding anniversary.

I've been thinking a lot about treatment options and quality of life lately. Captain Obvious is friendly with a coworker (in her 60s) who has all the symptoms of lung cancer and apparently a pulmonolgist told her it was "most likely cancer" after looking at a CT scan last year. She has responded to this news by doing nothing. Her justification is that she hates doctors. I hate doctors too. I hate hospitals and IVs and treatment rooms and tests and technicians and nurses. I hate being involved with the whole fucking medical system. But I submit myself to it because I ... because I have to. Until the other day she started coughing up blood and came to Capt. Obvious in tears. He convinced her to call a doctor and make an appointment; then the next week found out that the "doctor" she went to is a "traditional doctor" who is convinced her health issues are a problem with the yeast balance in her body (or something). Anyhow, I do not know her, but her choice to ignore this pisses me off.

Why? Why should it piss me off? I am not really sure but it does. On the other hand, I read the story of Mandy (Mandy's Journal) and I am questioning her choice to continue treatment that robbed her of her quality of life when she had so little life left...

Obviously, I am conflicted. I am dealing with Big Issues here and it is terrifying and wrenchingly sad. I am not scared of death but I just like living so much. I don't want my husband to be a widower. I don't want my son to grow up without a Mama. I'd like to have a 40th birthday party. I'd like to have a 50th birthday party, a 60th birthday party. I'd like to celebrate my 10th wedding anniversary. I'd like to be there when my son graduates from high school. Oh golly, as long as I am stating what I want, I want to be a grandmother. I've already abandoned all hope of having a second I have to give up these hopes as well? Some days I know with certainty that I will not make it to 50 and I can handle that. Some days I worry that I won't make it to 40 and that scares the shit out of me.

Wednesday, August 20, 2008

Getting Ready For The Trip

It is easy to feel happy and excited when I am getting ready for a big wonderful trip! This will be the biggest trip I have taken with Captain Obvious since our honeymoon 6 years ago (he pointed out to me that this trip is more expensive than our honeymoon was, too), and the biggest trip since the one I took on my own the first summer of law school (6-week trip to South America and South Africa). This is the first big trip with Captain Adorable. We bought a new camera, so there will be tons and tons of photos.

I also bought some more toys for the plane, another new bathing suit for me, a new (and bigger) swim diaper for Captain Adorable, and another swim shirt (sunblock shirt) for Captain Adorable. I assume we are going to spend most of our time in bathing suits next to water (poolside or beach) and I want to make sure I keep my little son's skin protected. Those sunblock shirts cut down on the amount of sun screen I will have to constantly reapply, if you know what I am saying. I also checked a while bunch of children's books and a couple of adult books out of the library so no one will be bored on the flight and we will have plenty of potty books no matter where we are.

We plan to go to Houston, when we get back from Hawaii, to get an official second opinion. However, my FIL has already consulted with the oncologist at M.D. Anderson there (the one I saw last October) and she has also recommended more chemotherapy. My FIL is looking into clinical trials to see which I might be qualified for...but no matter whether we chose conventional treatment (more chemo: Altima, which is administered once every 21 days for 6 months, then a 2 month break, then 6 more months) or a clinical trial (which most likely is not going to be fun either--let's face it, cancer treatment is never fun), this trip is the last bit of genuine enjoyment I am going to have for a while.

I have been reading the blog of a woman named Mandy, who died of cancer in January 2008. She was diagnosed in May 2007. Interesting to read about her perspective on the tests and the treatments she went through (so much of which mirrors my own experiences). Interesting to think about the fact that I have been blogging longer than she did. Interesting to wonder if perhaps her last months would have been better served by forgetting about treatment and just living every day to the fullest instead of being crippled by the tests and the treatments...I know, it is easy to second guess decisions of someone else, looking back; I am not trying to disrespect her decisions, just getting some perspective for my own.

I have been informed by 3 family members that they are interested in getting tattooed!! I hope to post pics of all of them. I like the idea that my beloved boy will see signs of love for his mother on the people close to him, whether I am alive or dead.

I am watching the women's diving on the Olympics while I write this entry. These athletes are so amazing. I want them all to win!

Monday, August 18, 2008

Fabulous Visit!

My sister came to visit me and I had a fabulous time. We have not seen each other since we were 19 or 20 (we're about to turn 35), so it has been a while. I say "we" in reference to our ages because we were born on the exact same day in the same year. We have different mothers. Yeah, kind of a cool coincidence. :) Yes, our father was a busy man.

Anyhow, she lives in Europe, so it is not very easy to visit each other. Which is why it has been so long. I was a little trepidatious about the visit--it could have been uncomfortable or awkward or boring. But I had a terrific time seeing her and having a chance to hang out with her. She's funny and enthusiastic and smart and beautiful. Her boyfriend is very nice too.

One of the many things we did that made me very, very happy was...(drum roll)...we got tattoos together! I have wanted a tattoo since I was 25 but somehow just have never done it (though several times I almost did). I asked her, mostly as a joke, if she would like to get a tattoo yesterday and to my surprise she said she would think about it--not in the way that means "no," but in the way that means she's actually going to think about it! Sure enough, by 9:30 on Sunday night, we each had an infinity symbol tattoo. We were inked at Jinx Proof in Georgetown (Washington, D.C.). The tattoo is the same exact design, but mine is 50% bigger than hers (ah copy machines are very useful, aren't they?!), and it is on my lower back (I know, tramp stamp territory, but no one is going to be seeing mine because I do not wear pants that low!) You can see my big ol' scar from lung surgery, too.

She got hers on the back of her neck, like a piece of jewelry.
The infinity symbol of course represents (the hope for) a long life for me and also the everlasting quality of a sibling relationship. I hope it represents the same for her. The tattoo also commemorates this visit, this moment in my life, this moment in her life, and this birthday we share (35, after all!). I plan to add something next year and every birthday from now on. I think next year I will add a rosebud...and then maybe an orchid or perhaps a lily. My sister said she hopes I will run out of space and have to start going down my legs!

I want Captain Obvious to get the infinity symbol tattoo now too. In fact, I think I am going to ask my brother and my Mom if they will do it too. Maybe I can get all the people who love me to get one. I like that idea. A beautiful, simple, permanent mark on their bodies. I will be remembered every time they look at the tattoo. Well, probably not going to happen, but I can dream, right?

Friday, August 15, 2008

I Asked For Help And I Got It

A sympathetic acquaintance from law school asked me if there was anything she could do to help. I know she would like to have her own practice doing trusts and estates, so I asked her if she could review my current will and make any necessary changes. She has been happy to oblige and I think I can go to Hawaii knowing that those documents are in place.

Wednesday, August 13, 2008

Look At These

One of the many things that amazes me and freaks me out is the fact that I have already outlived (from time of diagnosis) many of the people who had stage IV adenocarcinoma (which is what I have, in case you needed reminding). I just want my baby to remember me. I want to live long enough for him to remember me.

Tuesday, August 12, 2008


I've been so tired and so sad today. I took an Ativan last night to sleep at about 1:00. It was amazing--I could tell the pill had kicked in when I was able to stop crying. I did get a few hours of sleep, so the pill did its job. I do not like taking pills, but I think the Ativan was a good choice last night. Captain Obvious has asked me if I will take another one tonight...

Took Captain Adorable to a big local playground this morning. At first Captain Obvious was there with us, but once he left and we were alone I found myself lying down and sobbing inside the playground equipment. I had not seen a low overhang because of my hat and I smashed my forehead/nose right into a little roof. I sat/crumpled down and could not stop myself from succumbing to sorrow for a few minutes. Thank goodness Captain Adorable was happily amusing himself, seemingly ignoring me for long enough for me to pull myself together.

Then we went to the swimming lesson. On the way there I decided to call my non-communicative brother and tell him the news so that the first words I say to him in Hawaii are not "its worse than we thought." He did not say much, but I didn't really expect him to and so designed the call to be very short.

Took a 3 hour nap this afternoon. Thank goodness Captain Adorable was tired too, because I needed that sleep. He wanted me to wake up and I wanted to stay asleep a bit longer, and was not responding to his usual little touches, so he bit my arm! Well, it got me out of bed. We went downstairs and I made him a snack, then we went out to the backyard to play. When Captain Obvious got home he joined us in the backyard (until a work emergency took him inside) and then we went out to dinner because I could not get up the energy to cook and, well, we needed the distraction.

Still trying to plan our trip to Maui. We will be there for 3 days, then Oahu for 9 days, then the big island for 2 days. I was planning for us to stay on the north shore of Maui at a B&B on a flower farm, but it turns out that they have a strict policy of only allowing 2 people in a room. Wha? I don't get it. Why do we have to have 2 rooms for 2 adults and a toddler? Seems insane. Most of the other B&Bs have the same policy, so I guess we're going to have to stay at a big corporate hotel where our family is allowed to all stay in the same room. I had planned a relaxing itinerary that included the Road to Hana but now I am thinking maybe we will just hang out at some resort in Lahaina and maybe take a day trip to Lanai...we will see. I feel like my sorrow is leaking over into the planned escape from reality. I don't like that.

Monday, August 11, 2008

I Was Not Prepared

for the bad news we received today.

There are now 3 tumors in my right lung. I don't remember the particulars because my fear and sorrow blasted them out of my head, but last CT there was only one tumor. This time there are 3 and the biggest one is 1.6 cm.

The oncologist said my options are as follows:

- Stop all treatment
- Keep taking Tarceva but add Avastin
- Chemotherapy (would be at least 6 months of chemo--a different (harder) regimen than last time)
- Pursue a clinical trial--perhaps a vaccine. She mentioned one at NCI in Bethesda, MD and one in Miami.

There were a lot of tears. I am sure that more will flow. We're trying to get me an appointment at MD Anderson for a second opinion. Right now I am planning to change nothing until after our Hawaii trip.

I would like to make it to 50. That's only 16 years away. Captain Adorable won't even be 18, but he will have had me for his entire childhood and his formative years. Barring that, I would really like to live long enough to teach him to read.

Good Reason to Cry for the Female Gymnasts

Op ed piece in the New York Times. Creep Show

Oh, and I got about 2.5 hours of sleep last night with a bit of dozing this morning (I slept on the couch because I could not be still in bed and did not want to wake up the Captains) even though I could hear Capt. Adorable was awake upstairs.

Sunday, August 10, 2008

CT Tomorow

Another lovely fun-filled visit to the hospital tomorrow. I have been taking the necessary steroids because the CT scan will be done with contrast (so, an IV, sigh). Once again, the steroids are affecting me: I am so tired but not able to sleep right now. In addition, I have been very emotional. I cried earlier because I was watching the Olympics and I started thinking about what a huge event participating in the games is in those athletes' lives. Especially those female gymnasts. I mean, they're only children and they are competing at such a high, stress-filled level and they do such amazing things with their bodies! Then I cried a bit later because of fear--I do not want to leave my darling Captains! I want to stay with them, to love them and protect them for a long, long, long, long, long, long, long time yet...

So, this CT should show us if the Tarceva is working. I'll update when I have news.

Thursday, August 7, 2008

I'm A Hero; I'm A Villain

I am the hero of my life story! I might even play a hero's role in Captain Obvious's biography and perhaps Captain Adorable's as well. I know I have good heroic parts in the life stories of several family members and a few friends. I flatter myself that most of the people I've hung out with at least have positive impressions of me...(though Captain Obvious has at times told me that I can be too honest and rather lecturey...).

Today I found out I am also a villain in someone's life story. This is a woman I knew in high school and in the freshman and sophomore year of college. We parted badly. There was a fight--a big fight, a physical fight even! I do not remember the particulars. It was 16 or 17 years ago now...I do remember some of the issues that preceded the fight, but of course they are all from my perspective. I know that she would definitely remember things differently than I do...but I was not prepared for the level of anger I encountered from her when she emailed me today (in response to my request passed through an innocent third party). To my shock, her email was an angry diatribe against my past transgression against her. She ended her email with the words, "Honestly, the only reason I'm reaching out to you now is b/c innocent party said you told him that you have stage 4 cancer. I have to admit, a small part of me is wondering if this is another manipulation." Those sentences almost made me angry...but well, I'm her villain. I guess she could believe anything, no matter how horrible, of her villain.

I wrote a response apologising and thanking her for the opportunity to do so. I have no desire to seek further contact with her and it is quite clear that she has no interest in pursuing further contact with me.

Strange, all these years I've been her villain. I feel so ... confused ... Ah, well...I guess this was bound to happen when contacting people from the past.

Wednesday, August 6, 2008

Blah. Head Cold

Well my sore throat has become a raw throat, accompanied by a very runny nose and a cough. My sinuses are full of snot (you know, the kind that won't blow out and makes weird noises). Not surprisingly, I have a headache. Captain Obvious is going to come home early today, thank goodness. He will work from home, so if I need help, he is there, but unless I need help, he is working. Still, I'll take what I can get! I am getting ready to do another sinus rinse with my NeilMed sinus rinser thingy. It helps soooo much.

Meanwhile, it is a cool (for summer) morning, with a strong breeze, and Captain Adorable and I are out on the deck together. He is playing with one of his favorite things (ICE! ICE! AaaaahSSSSuh!) and I am enjoying the weather (as much as I can, feeling all crappy as I do...) and getting a chance to write a bit in this blog.

Today Captain Adorable is 19 months old! We've been talking about whether to have a birthday party for him this year (he will be two). I don't know if we should...I don't think 2 year olds really get it anyhow! His birthday is on January 6, so right after the holiday season, which makes me think people will not really be up for a birthday party, anyhow? I don't know.

Monday, August 4, 2008

Thanks! However...

...would it make you feel different to know that I was feeling angry and alone because I was angry at Captain Obvious? I was feeling alone because I was, literally, alone. We had a friend over for dinner and Captain Obvious decided he wanted to go out to a bar with the friend, leaving me alone with Captain Adorable to do bath time, bed time, and then just be by myself. I LOVE LOVE LOVE my sweet little son but I also like our friends. I like hanging out with adults! I was looking forward to sitting out on the deck with a bottle of wine and some adult conversation. Instead I felt angry and impotent and abandoned.

We had a discussion. I feel better now. I am also pretty sure that we are going to have this argument again, seeing as this was the third or fourth time we've had it since the beginning of the summer. Sigh.

Moving Along...
Today was a little difficult as I have been tired, have a very sore throat, a big raw sore place on the inside of my lip, and have diarrhea again. Thanks, Tarceva. Captain Adorable was a sweetheart (as usual) today and we had fun together while grocery shopping. I never knew a honeydew could be so wonderful!

We're pretty busy for the next 4-6 weeks. Next weekend we're going camping (yay!). The weekend after that my half-sister is coming to visit for a few days with her boyfriend. (Have not seen her in over 10 years, so this should be the guest room is currently full of boxes I am going to have to Do Something About before they arrive so that they can sleep in there!) The weekend after that Mrs. Breadwinner is having a birthday party for her son on Saturday, who is turning 3, and that Sunday I am going to participate in a yard to sale to sell some of this useless baby crap (I mean, fine products that are helpful and necessary)..then on Tuesday we are (drumroll!!! cymbal crash!!!) leaving for 2 weeks in Hawaii! Yipeee! I've ordered some extra bathing suits for myself and a sunblock shirt for Captain Adorable (because sunblock is just such a complicated proposition)...bought him some flip flops today. SO CUTE!

Should be a lot of fun, to hang out with my husband and my son with nothing to do but enjoy ourselves for a while. For part of the trip (9 days), we've rented a house with my brother and my sister-in-law, so that will make it all even more fun! Oh I am so looking forward to everything!

Sunday, August 3, 2008


I am really angry and I feel really alone. That's all I am going to say.