Wednesday, December 31, 2008

Beautiful New Tattoo!

My friend, whom I will call Persuasion for the purposes of this blog, got this beautiful infinity symbol tattoo weeks ago. I took this photo when she came over for dinner while I was at my parents house in Tennessee on December 18, 2008. Persuasion's tattoo is delicate and strong at the same time. Really lovely and a new interpretation of the theme! I love the way the line fades, allowing the eye to make the connection. The design is asymmetrical but perfectly balanced. Of course I dig the placement too--that between the shoulder blades look is just gorgeous!

I think this is an appropriate last post for 2008 because it ends this year of blogging on a beautiful note--the beauty of the design and the beauty of friendship, the shared experience, the joy of telling you about it, and the celebration of body art. I tell you, seeing this tattoo and the designs Capt. Obvious is considering are making me want to have mine embellished! (Yes, Captain Obvious is getting tattooed in 2009. Just you wait!)

HAPPY NEW YEAR! Love to All!

Tuesday, December 30, 2008

Findings and More Tests

The findings of the endoscopy show "A few small the lower third of the esophagus. Biopsies were taken with a cold forceps for histology." (Must be why my throat is sore!) "The Z-line was mildly irregular and was found 36 cm from the incisors. Biopsies were taken with a cold forceps for histology. There were no esophageal mass lesions found." No idea what the Z-line is--I shall have to ask. And again, must must be why my throat is sore. At least my stomach and duodenum were normal.

The findings portion of the colonoscopy report (in part) says, "a sessile polyp was found in the rectum seen on retroflexion. The polyp was 4mm in size. The polyp was removed with a cold forceps. Resection and retrieval were complete. Specimen sent for histology." Yum.

The NCI nurse called me today to let me know that they are scheduling me for 2 more tests: an upper GI with small bowel follow through and a mammogram. I can't wait. (Um, not.)

Now, my sweet Captain Obvious was left with 100% of the toddler care for two days, essentially, but damn I did a lot of clean up today. In fact, I did four loads of laundry, ran the dishwasher, emptied the dishwasher, took down the recycling and trash, hand washed a whole bunch of dishes since the top rack of our dishwasher seems to be broken, cooked lunch, made bread (easy--just put the ingredients in the bread maker), went grocery shopping, and cooked dinner. Plus I was alone with my sweet little Captain Adorable. Honestly, I don't understand why Capt. Obvious can't even get the dishwasher cleaned out when he takes care of the little one 100%...oh well, I guess I have a method and he doesn't...Captain Adorable is pretty overwhelming...even my Mom can do nothing but take care of him when she is 100% in charge.

My poor little Captain Adorable had diarhea today, so he woke up with a (cloth) diaper full of poop (great way to wake up, let me tell you), and then several other pairs of undies (poor guy just couldn't help it!) until I finally found the last two disposable diapers in the house. I needed to put cream on Capt. Adorable's bum because that poop (even with immediate changes and washing with water and gentle soap only) caused red bumps on his sweet little butt and I think you are not supposed to use cream with cloth diapers. Anyhow, the first one he happily peed in (and told me he did so). Then we took a nap. I let him sleep in his bed with a bare butt since I thought that would help his skin heal. I woke up before him and watched him till he woke up a few minutes later, and went to pick him up to discover that he had peed and pooped in his bed. UGH! So, I had to wash him and then wash the sheet and the mattress pad...blech, let me tell you. I put him in another diaper and I was glad I had done so because very soon after there was another load! I had to put him in undies then because we were out of diapers, but when we went to the grocery store I bought some more disposable diapers. No more since then, thank goodness. He seems to feel fine and he has no fever. I told Capt. Obvious that he is not allowed to take Capt. Adorable out for barbeque Ever Again.

Monday, December 29, 2008

Still Shaky

We left the house at 7:15 to be at NCI by 8:30 and we were almost an hour early. Traffic was so good! I guess not everyone is back at work yet. Anyhow, we filled the time with finding the office where there was a form I had to sign to get my latest CT on CD. Should get that sometime next week.

The nurses were very nice and gentle and sweet. The doctor was also nice and cheerful and they all put me at ease. The heart rate monitor alarm kept going off because my heart rate was dropping to 50 bpm or lower (I saw it go down to 46!). This is while I was awake and lying on the table.

The procedures were not bad. I did not feel much. I do not remember much, just like they said would happen. I will talk more about it later. Right now I just want to make this as fast as possible because I feel terrible. I vomited from the water and apple juice they gave me after the procedures. I vomited 3 times before we left--once in the wheel chair waiting for Captain Obvious to pull up in the car (which was only steps away). I slept in the car on the way home. I slept once we got home. I woke up at about 5:00 (well, I woke up a few times before then, because someone small and sweet kept waking me up with unauthorized visits to the bedside but finally Capt. Obvious closed the bedroom door). I feel slightly dizzy, I have a headache, and I generally feel disoriented. I tried to drink some water (I've had nothing to eat or drink since about 9:00 last night) and I threw up. We paged the doctor and unfortunately, my reaction so far is normal for some people. Everything I have tried to drink (and I am talking teensy amounts) has resulted in vomitting. The Captains left to go out to dinner, so I am alone at home, writing this to you. The doctor did suggest just trying to sleep off this reaction, so I will probably go to bed very early tonight. After all, what's the point of being awake if I feel so bad and can't even eat or drink?

Just so no one gets too worried, I did receive fluids through the IV I had during the procedure, so we are not scared about dehydration right now.

Sunday, December 28, 2008

Clear Liquids Only

Everything I have read and heard about the colonoscopy has informed me that the test itself is not so bad. The preparation, on the other hand, is difficult. On Friday and Saturday I was instructed to "bland down" my diet. No beans, corn, or onions. No vegetables. Nothing with fiber in it, really. OK, well, this meant I ate mostly pasta and tofu, but it could be done. After all, I did have a couple of latkes at the Hanukkah dinner last night and those did have onion in them...I also had a bit of applesauce on the latkes...I did ask the gasteroenterologist about this and she said it was ok...

Of course she also told me that the better the prep, the better the test. The cleaner I am inside the better a look they can have. So, I am being as perfectly adherent as I can, because dang it, if there is something to find, I want it to be found!

Today is clear liquids only. Plus I had to drink this "powered lavage solution" which you mix with water (one gallon) and then drink during a period of 3-4 hours. And you, well, empty out anything that could be termed brown or non-clear. Captain Obvious napped with Captain Adorable this afternoon because I was too busy drinking the (yucky but tolerable) solution and visiting the bathroom to do anything else. I sent the two of them out to dinner without me because I think the scent and sight of food would really depress me right about now. I am not a banana fan but those bananas in the fruit bowl that I bought for Captain Adorable are starting to look really good.

I am writing this while sitting at the kitchen table. The 8 candles of the menorah burn beside me. Ah, laptop by ;)

Anyhow, the tests are tomorrow. I hope my prep is good enough! Of course I will report results here when I have something to report.

Saturday, December 27, 2008

On The Seventh Night of Hanukkah

Ms. Resourceful, her husband, and her two children came over for the seventh night of Hanukkah tonight. Not that I am Jewish, but I grew up celebrating Hanukkah (along with other Jewish holidays, and sometimes even the Sabbath). I wanted to share my memories and this beautiful ceremony/tradition with our friends.

Captain Obvious grilled a beef brisket (being a life-long lacto-ovo vegetarian, I of course did not have any) that was absolutely delicious and I made potato latkes and steamed broccoli (with a lot of help from Ms. Resourceful). For dessert we had chocolate gelt and some sweet buns that my MIL dropped off the other day when she came to celebrate Christmas with her grandson (Captain Adorable, in case you need it spelled out for you). A simple but yummy and filling meal.

I had a nice time. :) Meaning that I felt comfortable and happy while they were here. Captain Adorable got a bit over excited and started taking all the ornaments off of "Dada's tree," and some other minor misbehavior (like some pushing, grabbing) but was pretty much a typical toddler. It was difficult to put him to bed after they left because all he could do was talk about the other children. He loves them both.

I plan to celebrate with them again next Hanukkah.

Tuesday, December 23, 2008

Endoscopy and Colonoscopy Scheduled

Well, looks like I'm a weirdo. Nothing that looks like cancer showed up on the CT scan from yesterday. However, the 3 small tumors in my upper right lung have been growing. They are all a bit bigger. When I say "a bit," I am talking about a few millimeters (one grew 6 millimeters...). This is a slow-growing cancer.

The NCI team is convinced that I do not have lung cancer because of the genetic test (KRAS). But they say I am not showing a primary colon tumor and they may never find it, which would put me in the 2-3% category (meaning that only 2-3% of people have cancer with a primary that cannot be found). Even if no primary tumor is found, the NCI team recommends treating this as colon cancer. According to what was said today, I've been being treated with the wrong drugs all this time. Lung cancer gets certain types of chemo and drugs and colon cancer gets a different tpe. So far I've only been treated for lung cacner. And of course, if you've been keeping up with this blog, you know that despite my treatment, my cancer has been growing for the past year. Neither chemotherapy nor Tarceva has slowed or stopped it. I do feel hopeful that treatment with the right drugs would help...and also nervous that maybe it won't...

A big part of me thinks, OK, then if I am not going to die any time soon, maybe I should just stop all this depressing testing and treating and be happy. Maybe we could have another baby.

Sigh. Dreams dreams dreams...can't let go of that dream yet no matter how illogical I know it is...I love my son so dearly! I would love to have another child, another baby, another pregnancy. I would love for my son to have a sibling. (No, adoption is not for me. I want the physical experience of pregnancy and birth. I want a home birth! I want to nurse my baby till we are both done!)

Anyhow, I met with a gastroenterologist this afternoon. She was quite personable and sweet. She said she does not expect to find anything. I am scheduled for both an endoscopy and a colonoscopy on Monday (Dec. 29). Will post results here of course.

In other news, we gave Captain Adorable a toy drill tonight (it being the third night of Hanukkah). He loves it so much! He was totally engrossed. Just like Daddy's, only smaller and not as dangerous...I hope! ;)

Monday, December 22, 2008

I Was Mistaken

Sigh. I should learn to read emails better. Anyhow, it turns out that I am in fact not having a colonoscopy tomorrow. I am meeting with a gastroenterologist tomorrow, but there is no colonoscopy scheduled for this week. This is a bummer (oh, haha, I am hilarious) because my Mom is going to have to go home to care for her house and animals and that 8 hour drive is not something you do every other day...

However, my Mom has had a few colonoscopys and she says that it would be ok for Captain Adorable and Captain Obvious to drop me off before the procedure and pick me up afterwards. I think that will be fine and will mean that Captain Adorable gets to stay with him Dada, an arrangement that is good for them both.

Another reason I am disappointed is because I Want To Know. I am tired of waiting. And yet I know there is more waiting in my future.

Sunday, December 21, 2008

Here We Go

Tomorrow (Monday) Captain Obvious and I are off to NCI for the first day of testing. Tomorrow I will have blood drawn and at CT with contrast. I am on prednisone tonight because of my allergy to the contrast dye (iodine). I dislike prednisone.

Tuesday I will have the colonoscopy. I will report the results, of course.

I have pics to post from my trip to TN last week. However, at the moment these tests are crowding my mind and my time.

Thursday, December 18, 2008

More Information

Tidbits of information keep trickling in. I find it all a bit overwhelming again, but less so than last time around...for now, anyhow.

I have been advised of an important correction: my mother's father died of colon cancer at age 43, not age 40. :) This makes me feel confident that I will get to celebrate my own fortieth birthday! (Perhaps even my fiftieth...)

The plan that NCI has for me right now is to do an entire work up on me. I am going to have blood work and a CT with contrast (so I have to take prednisone for the 24 hours prior) on Monday, and meet with the oncologist and have the colonoscopy on Tuesday. If necessary, I could also have an endoscopy and even do the procedure where you swallow a little camera at NCI. My team there intends to "package" me, so that when I walk into the office of the oncologist to whom I go next, all the necessary tests will have been done. The NCI onc(ologist) says that the standard of care treatment for colon cancer (which it is not entirely clear I have, more in a minute about that) is chemotherapy, so it looks like I will be doing chemo again starting the first week of January. The NCI onc says that with colon cancer they try to just have you live on chemo, so this will be a long haul (with scheduled breaks). All those of you who are near enough in location will probably get a request to help with house sitting in Tennessee at some point! :D

I asked that the onc read the pathology report to me over the phone yesterday and here's what it says (in part): "while mucinous adeno may be primary in lung it is rare, staining is not consistent with lung. It is consistent with intestinal." I clung to that last word and asked the onc for clarification. He agreed that the path report is indeed not narrowing the source of the primary down to the colon, and that is why I may in fact end up having an endoscopy if no lesion is found during the colonoscopy.

He also said that the fact that I am asymptomatic does not mean much and that I do not behave like a person who has cancer of indeterminate primary. (I did not ask what that would be like, just accepted his opinion that I am not doing that, whatever it is.)

Wednesday, December 17, 2008

More Waiting...Sigh

My world has changed. I do not have much information to share here. However, here are a couple of relevant bits.

My maternal grandfather died, at age 40, of colon cancer. I do not have the symptoms of colon cancer (gas, abdominal pain, blood in stool, cramping, constipation) but remember, I didn't really have the symptoms of lung cancer either. I mean, yes, on occasion I have gas, abdominal pain, and cramping, but I think everyone gets those from time to time you know? Just a normal part of life.

In order to see if the test results are correct, the oncologist at NCI as scheduled me for a colonoscopy. I think Tuesday, but he is going to call back this afternoon to tell me and talk with me some more about this diagnosis.

I called the Univ. of Maryland oncologist and he said I could call back in a couple of days for his test results. No, I did not tell him about the results from NCI. I probably would have, but I am glad I did not because I want their testing to be independent, not to be done looking for a particular result.

Right now the plan is more waiting while we gather information. I think next Wednesday we are going to have a planning talk with my FIL and see where to go (literally and figureatively) from here.

Tuesday, December 16, 2008

The Worst News (and The Best News) I Never Expected

OK, this is all extremely new and it has not really sunk in for me yet. I will probably say all the details wrong. But here we go.

The oncologist from NCI just called (I am in Tennessee). According to the tests they ran on my tumor tissue, everything points to COLON cancer, NOT lung cancer.

So, this means.....oh god this means my life has changed. It means there is far more hope of survival (50% survival rate after 5 years). It means more hope for treatment--there are many more drugs available for the treatment of colon cancer, which are well tolerated.

I still have stage 4 cancer, but now it looks like it is not lung cancer. And that is fabulous, wonderful news!!

However, it also means I've wasted a year. An entire fucking year. And now I have to find a new oncologist (no NCI lung cancer study for me, and NCI does not have a GI team) during the holidays, and I am certainly not going back to JHH. Even though of course I'd have new a oncologist, the problem for me is that I do not trust the pathology department in the slightest. I will not ever trust anything they do ever again. That year, that suffering through chemo, the whole Tarceva daventure, was all a waste. A waste of my time, my precious, precious time. And that is devastating, sad, break-my-heart news.

Thursday, December 11, 2008

Visit To Tennessee, Then Start Trial

I visited an oncologist at the University of Maryland on Dec. 8 and the National Cancer Institute on Dec. 9. I had good experiences at both places. I have decided to go with one of the trials at NCI. JHH did send a block (of tumor tissue) over to NCI (after the aforementioned prodding by my sweet MIL) last week and now that block has been cut into slides and sent to California for more testing. If the KRAS test comes back as being "wild type" (or, normal) then I will do the first choice study. If it comes back as being mutated, then I will do the second choice study. No matter what, I will spend 2-3 days (Dec 22 and 23, or 22, 23, and 24) at NCI being tested and signing forms. Whee. I will start treatment that week, though. Thank goodness! Not being on treatment is wonderful but at this point it feels cancer a good chance to pop up anywhere in my body! Scary, scary stuff.

So, Captain Adorable are flying to Tennessee on Dec. 14 to hang out with my parents and on that Saturday my Mom is driving up with the two of us. I will be abandoning my return flight from Tennessee, but since I have to be at NCI at 8:00 on Monday morning, my Mom rightly pointed out that coming back on Sunday would be pushing it quite a bit.

I am no longer angry/sad about the horrible JHH mistakes. I just don't have the energy to maintain that kind of attitude. It feels so much nicer to let go, put it to rest, and move on. I do not know how much time I have left, but I do know that I want to spend that time enjoying my life instead of being angry over something I cannot control or remedy any more than I already have.

Here are two things I wanted to mention. 1) At both visits, the oncologists decided to have my tumor tested to see what kind of cancer it is. Both Captain Obvious and remember asking my current oncologist about this during our very first visit back in October 2007, but she said at the time that since the tumor in my lung was SOOOOO big, it was obviously the primary and so the testing was unnecssary. However, you may not know that the start spot of the cancer (where the primary is) is what determines what type of cancer you have, and what kind of cancer you have currently determines the type of treatment best for fighting that cancer. So, it is rather important! I am glad that both UMD and NCI are doing it, so I will have independent test results. 2) The NCI oncologist, upon learning that I was diagnosed with stage IV lung cancer over a year ago, said "Well, you're doing really good." That damn statistic immediately popped into my head (15% survival rate 5 years after diagnosis). However, while feeling that familiar fear and worry, I also felt "yeah, I know what the statistics say, but I am an unusual case, and probably have a much better chance of survival than the statistics say!" So I was a little surprised to realise that I felt that so strongly.

Wednesday, December 3, 2008

Amazing Bed News

I have been so overwhelmed lately (in a good way by my parents' visit and Thanksgiving and in a bad way by this ridiculous test results and tissue sample saga) that I have not written about the Big News in our bedroom.

Get your minds out of the gutter!

I will write more about this, but the news is: Captain Adorable is sleeping in his own bed. The crib we bought is a convertible (converts to a toddler bed and eventually to a full bed) and we moved all the furniture around and put the crib (configured as a toddler bed) almost next to our bed (the foot of his bed is right up against my night stand). He decided one day to start taking naps in there and that worked out great. Then one night he decided to go to sleep in there. So far he has ended up in the big bed (where he is absolutely welcome) every night, but he is sleeping in his own bed for longer and longer stretches. Last night he did not come to our bed till 5:00 or so!

I have been rather surprised by how easy this transition has been so far! I've even been a bit sad about it since I love co-sleeping so much. But Captain Adorable is confident and independent and has choosen to sleep on his own and that's wonderful. I am proud of him. But with his bed in our room, we still get plenty of snuggles, especially in the morning!

Called In The Cavalry

Today I started calling at 9:00 this morning. The Pathology department told me they were re-cutting the slides and might have them finished by Thursday but no guarantees. I then asked that they release the block and was told "We don't release blocks." I pointed our that the tissue was mine, that I needed it released, and that the signed authorization form I faxed them specifically says "block" on it. The person on the phone said she would talk to a supervisor and, when asked, said I could call her back at 2:00 to find out the progress. I called Captain Obvious to discuss this and he said "that's not good enough." We agreed it was time to call in the cavalry.

I called my MIL (who works at JHH, but not in oncology) and asked for her help. She must have burned up those phone lines because not more than 45 minutes later that same unhelpful person from pathology called me back to tell me that they would be sending out a block today! She asked if I would like to come pick it up or if they should send it overnight to NCI! I was shocked and said I would call NCI to find out and call her back. Unfortunately, the NCI contact nurse told me that having a block rather than slides means the block has to be sent to CA to cut and that takes about a week. So, another blockade to be getting into the study. Why oh why didn't she say it HAD to be slides if that is what she meant? I am sure my MIL could have gotten slides if we had known! Oh well, I am sort of convinced there is no way this is going to happen anyhow. So no emotional investment.

Then my MIL burned up some more phone lines and called to wrangle the official report of the KRAS results. She was promised that the results would be ready TOMORROW!! Do you believe it?! Plus, the pathologist she talked to recommended several other tests that should be run on my tumor in order to help me evaluate other treatment drugs (something the guy from NCCS also said on the phone the other day but I did not mention it in that blog entry).

My effing oncologist has been doing...what, exactly? I am not sure. She sure ain't done nothing for me, anyhow. She never returned my call from yesterday. She never returned my call from today. To be fair, she did answer my email, but by the time she got around to it, my MIL had already done all the work!

I also got help from my cousin, who, it turns out, works at the University of Maryland Greenebaum Cancer Center. She hooked me up with an appointment with a lung specialist. This is very important, big news. Yes, I have decided to leave Johns Hopkins over this horrible, disgustingly slip-shod crap.

Of course, none of this means I will get into the study. It could still all be too late. There are a couple of studies at Johns Hopkins opening soon, too, so while I do want to leave, I do not want to burn any bridges. I need these people and this facility... and the fact that MIL works there and can help me out if I need it, well, makes it somewhat bearable...I guess.

So, I am taking suggestions on how best to express my appreciation to my MIL. ;)

Tuesday, December 2, 2008


OK, I talked to the contact nurse for the study at NCI. Turns out the fact that my tumor is negative for the mutation means that I am of the wild type, which means that I do qualify for the study. Grrrrrrr.

Now it turns out that JHH Pathology Department did in fact not send the tissue samples today as promised. Their explanation? They did not have 20 unstained slides. Well, guess what?! The fucking authorization form that I so carefully filled out specifically says "20 unstained slides OR a block." They could have just sent the block today. But no. And of course how did I find this out? I found it out from the nurse at NCI!!! No one at JHH feels it was important enough to tell me or ask me or communicate with me about this.

I am livid. I am disappointed. I am is disbelief that this is actually going down like this.

I guess I shouldn't be. I guess this should be exactly what I expect out of our medical system. Because this seems to always be the way it turns out, doesn't it?


Just talked to a person at the National Coalition for Cancer Survivorship (NCCS) and it looks like I was wrong. I mean, it looks like the fact that it is negative for mutation means I would have gotten into the study.

But I am not sure. I am so sad that I am finding it difficult to understand these concepts right now.

The NCCS guy also suggested that it is time to think about Alimta and also about seeing another oncologist here on the east coast, seeing as there is a definite communication problem with my current doctor.

Monday, December 1, 2008

Email Correspondence

I wanted to send a really scathing email to my oncologist about this mess, but my FIL talked me down. Here's the email I sent:

from Rose
to Oncologist
date Mon, Dec 1, 2008 at 9:18 PM
subject Still No KRAS Data 8 Weeks Later


It looks like I will be dropped from the NIH NCI Pfizer study because of my lack of KRAS data. It has been 8 weeks since the KRAS test was ordered. Is there something I can do to get things moving?


Here is her response:

from Oncologist
to Rose
date Mon, Dec 1, 2008 at 9:30 PM
subject Re: Still No KRAS Data 8 Weeks Later

I was called about it today. They believe it is negative for mutation, but they are sequencing the genes to make sure.
Sorry about is crazy. It is not the norm.
I will let you know as soon as I hear anything definitive.

So, the one piece of info that is not awful is that the tumor is negative...this means that I would not qualify for the trial anyhow. So therefore, this 8 week wait which has resulted in me not being able to get into the study does not really matter since if the result is negative I could not have been accepted anyhow... so at least the lateness of the result did not destroy something I could have had...

Sigh. I've had a hard day with many tears of frustration and anger. I hate crying in front of my darling Captain Adorable. When he sees tears roll down my cheeks he touches them very gently with his finger tips. That always makes me stop.

Understanding Clinical Trials

In response to some questions I have received...

Study researchers don't get 100 (or 1000 or however many participants) and then start. The study starts, then gradually admits patients as they (the patients) meet the admission requirements until they(the study researchers) have reached their total. It is not like the study just filled up in the past month. I have no idea when it started. I do not know how many participants they want, nor how many they have now.

I do know that because Johns Hopkins lost my block, the necessary test to determine whether or not I can be admitted will be back at the very earliest in two weeks from now. The study may very well have reached its admission goal by then. If Johns Hopkins had run the test when they were originally asked (6 or was it 8 weeks ago now), I could be in the trial right this minute. But no, no, instead this door is closing to me before I even get to find out if I was qualified. I wanted to do a clinical trial because it was supposed to be fast. When I decided to do a trial 2 months ago, I thought I'd be finished by now!!! Instead I am still waiting to find out if I am even admissible.

I am so far beyond disappointed. I am sickened and disgusted and angry. I am livid.

And I feel helpless.

And alone.


Cancer Sucks.

Devastated and Angry

Well, after much communicating with the oncologist and her nurse practitioner at JHH, I received notice that the pathology department had lost my block and so the KRAS test has not even been started. I have been waiting for these results for WEEEEEEKS and each time I asked about it was promised once again that it would take two weeks.

So now the problem is that since we've been waiting for so long to get these results, the study that held the most promise for me will likely be full before we get the results. I just heard from the contact nurse at NCI and that is exactly what she told me.

Thanks for fucking me in the ass, Johns Hopkins. Thanks so very very much.

Thursday, November 27, 2008

Happy Thanksgiving

I think Thanksgiving is my favorite holiday! I have excellent memories of celebrating Thanksgiving with my family and I am lucky enough to have my darling parents here in my house to celebrate with me and my little family this year. I am also pleased that my friend Steadyhands and her husband and daughter are coming over to share the meal with us. We put the extra leaf in the table and I have my Grandma's (non-)china and silver out! OK, it turns out that I do not have any table cloths long enough for the table at its full length, so I had to use blue and white place mats with the piunk and white plates. But I think it looks good. There are pink tipped roses on the table in a blue vase, so hopefully that will kind of pull it together. I guess it does not really look like a Thanksgiving (or fall) table, but I am kind of a minimalist when it comes to decorations of any kind, so this is right up my alley. I do with the roses wouldn't look so lopsided...maybe I will go do something about that.

I stareted cooking yesterday. I made a butternut squash galette and an apple pie. I think both came out well. I intend to serve them both at room temperature. I am now simmering cranberries for sauce, which will also be served at room temperature. We are planning to serve at 4:00, so I have less than 2 hours to get the mashed potatoes and the sweet potatoes cooked and in their serving dishes. Gotta go!

Sunday, November 23, 2008

Asute Quote

I am reading Doris Lessing's The Golden Notebook, and in her 1971 introduction there is a beautiful reason for writing about personal matters--one which resonated with me. I am an admirer of Lessing's work and I am amazed by the quote below, since it applies so perfectly to the phenomenon of blogging. (And to ideas and conclusions of mine.)
At last I understood that the way over, or through this dilemma, the unease of writing about "petty personal problems" was to recognise that nothing is personal, in the sense that it is uniquely one's own. Writing about oneself, one is writing about others, since your problems, pains, pleasures, emotions--and your extraordinary and remarkable ideas--can't be your alone. The way to deal with the problem of "subjectivity," that shocking business of being preoccupied with the tiny individual who is at the same time caught up in such an explosion of terrible and marvelous possibilities, is to see [her] as a microcosm and in this way to break through the personal, the subjective, making the personal general, as indeed life always does, transforming a private experience--or so you think of it when still a child, "I am falling in love," "I am feeling this or that emotion or thinking this or that thought"--into something much larger: growing up is after all only the understanding that one's unique and incredible experience is what everyone shares.

This is in harmony with the idea that it (you know: life, the universe, and everything (hehe)) really is all about love. I love you because I love myself. Or, I love myself therefore I love you. We all share the same ancient dance, the same common (not used in the sense of mediocre, but the sense of shared) experience. We are each unique, amazing, never seen before and never will be seen again, and yet we are all the same. All in step together on this beautiful twirling whirling ball of ours...

This is central to the reason why the tattoos, each and as a group, touch me so much. The tattoo is experienced by each of us differently--they are in different spots, different sizes, done in different countries, and even undertaken for different reasons. But they unite us, mark us all as sharing an idea, sharing that experience, making us a group, a whole together. Some of those dear people who have been tattooed for me (or for themselves, however you chose to look at it) have not even seen me in decades. Most of them have never met each other. They are spread across 2 continents. And yet, they are all united with me, with each other, through that ink in their skin.

Saturday, November 22, 2008

News From Cambridge!

Another photo of a fabulous infinity tattoo from across the waves. My little (half-) sister is the one who has most recently become adorned. I think it is so beautiful and I really like the placement right above the ankle like that. I am yet again touched and amazed (last time I saw her, she was only a bit older than Captain Adorable is now) that she would face her fears and go under the needle for me. I want to smother her with a giant hug and a whole lot of kisses (but we're probably too old for that now even if we were on the same continent.)! Captain Obvious must bring home a bottle of champagne to celebrate!

Friday, November 21, 2008

Captain Adorable Update

Captain Adorable knows his colors! He learned them in the space of 5-7 days. I guess he was ready. I love it when he says yellow (yeh-yo). He points out the color of everything he sees now. Sooo sweet! A joy for me.

On Wednesday we had our friends over--a boy who is 2 days younger than Capt. Adorable and his mother. They came over at 10, or was it 10:30, for some play time and some lunch. Captain Adorable does not know the boy very well, but we've had a few playdates now, so he is certainly not a stranger. I was quite embarrassed (and lost my temper a bit) because Capt. Adorable just kept hitting the boy! He hit him with his hand, with various toys, and even with the container that we keep the toys in! Fortunately I do not think he hurt the other boy (no crying) but I was shocked and, as I mentioned before, embarrassed. My mom pointed out, when I moaned to her about it, that Captain Adorable is a pretty physical guy--he plays rough and tumble with a 4 year old friend (Ms. Resourceful's son) and a 3 year old friend (Ms. Breadwinner's oldest son). That made me feel a bit better... The boy's mother sent me a sweet thank-you email so I think she is not holding it against us. I hope we have another play date. Maybe with more planned activities...

Captain Adorable does not eat as much as I would like. I make him the same food that I/we eat. I put it on his plate (he gets to pick the plate he uses from a selection of 3 lovely plates that my Mom bought him--a bluebird, a chicken, or a group of rabbits) in an attractive manner, all cut into perfect little bite-sized pieces. More often than I care to think about, it all or mostly ends up on the floor. :( I have seen him go to town and really eat a big meal, but I would like it if he would eat consistently everyday, instead of often almost nothing, often halfway decent, and sometimes very well. I want my little one to have some more meat on his bones!

Today I was super discouraged and sad after the super yummy oatmeal I made him for breakfast was rejected, but when we were in the grocery store there were organic orange pieces and organic apple cider samples and he ate and drank them, so I felt a little better. Then I decided to make him popcorn for lunch (I bought some organic pop corn while we were at the store and he was all excited about it, so I thought, yeah, lunch...). I know, not very nutritious, sigh. I gave him a bowl with about 2 cups of popped corn and put a tablespoon of melted butter on it, then added about a teaspoon of nutritional yeast and a teensy bit of salt. He ate with gusto! He even asked for more!! I put another 2 cups or so of popped corn in his bowl, and melted another tablespoon of butter for him. (My popcorn was plain.) I did not add more nutritional yeast since his bowl was pretty yeasty already. He threw it on the floor, but he put most of it back in his bowl and continued to eat, so I was not complaining. I heated up left0ver cream-of-corn soup (yeah Vita-Mix) and put some of that in his cup (did I blog about that already?) and he had a few sips! Then I got the idea to give him a spoon with sunflower seed butter (from here on I will call it sunbutter). He ate 3 spoonfuls! I was quite a happy mama!

Later on, my friend Steadyhands came by for tea (while Captain Adorable napped) and brought lemon pound cake! Nummers! When Captain Adorable woke up, I offered him some (I know, not very nutritious) and he ate a slice and a half! Yay!

So, I was almost at the desperation stage this morning with the oatmeal and here at the end of the day I feel satisfied with his food intake for the day. Thank goodness. Some of the mamas who post on MotheringDotCommunity suggested that I prepare a food tray for him that I leave out all day so he can decide what and when he eats. This is a great idea and I am going to give it a try. I will update if it goes well.

Wednesday, November 19, 2008

Feeling Sad

I recently was in the situation of admitting to myself and to Captain Obvious that I am, despite outward appearances, still very, very, very, very, very, very sad. If you confine your crying to times when no other adults see you it doesn't count, right? I do not like to cry in front of Captain Adorable, so I try to hide it or cut it short when he is around, so everyday.

I find lately that people I used to really like seem different to me now and people that I may not have appreciated so much in the past are more and more important. Nothing beats the simple pleasure of having a tasty meal with people you love. DeeLux made me so happy by sharing a meal with our family the other night and Ms. Resourceful (as always) cheered me so much (even caught myself laughing!) when I visited her place yesterday.

It really is all about LOVE, isn't it?

Saturday, November 15, 2008

Sample Schedule for Trial

So, just because I feel like sharing, here is the sample schedule for the trial at NCI that I am hoping to join. The contact person for the trial sent this to me. I am definitely going to have to have my Mom here when I get accepted to the trial! No one else will be able to care for Captain Adorable for this long--he will already be way stressed to be without me this much. He needs his Oma! (And maybe I need her too.)

Here is a sample schedule

Monday get screening scans
Tuesday actual screenin appointment
Wed start study drug. This is an 8 hour day because of study tests. This counts as day 1

Thurs. Day 2 one blood test

Day 7. Tuesday doctor visit blood test ekg

Day 14 same as day 7 but there are extra ekgs. Time at hospital about 6 hours

Day 21 same as day 7

After this time you will come back every 3 weeks

Friday, November 14, 2008

Little Update

It is a job getting all the required information over to the study contact at NCI. Before I can qualify for the study, they have to review: all pathology reports, all chemotherapy flow sheets (not even precisely sure what these are), doctor's notes, CT reports, recent lab reports, a CD containing my two most recent CT scans (so the actual pictures, not just the reports). They also need the results of two test: a KRAS test on my tumor (the tumor is at JHH, and no, I am not sure exactly what KRAS is either), and an HLA test (which I am also not sre exactly what that is, but I know it has to do with my T-cells). I had the HLA test done today and the KRAS test is (maybe, hopefully) being run at some point soon. I also have to have 20 unstained slides or a block (the tumor) and 4 stained slides sent over. Sigh. This requires talking to all sorts of departments, faxing authorization sheets, and mainly being on the phone for much more than I would like to be. Looks like all the stuff will get over there in the next couple of weeks. So frustrating that it takes so long! I feel like screaming "My tumor is still growing while I wait for you to hurry the eff up and get your job done!" sometimes...

In other news, last night at dinner Captain Adorable said, for the very first time, "More, please." This is cool for two reasons: 1) he's never put those two words together in a sentence request like that before! and 2) he wanted MORE?!?! (He almost always eats less than I would like.) So, I guess my broccoli, spinach, and ricotta pie was even more of a hit than usual. Way to make a mama's heart soar.

Thursday, November 6, 2008

Some Communication

OK, after calling 3 times today, I got a return email and a follow up phone call. Looks like she's on board with my plans, for the most part. Now I am just waiting (up to another 2 weeks, UGH!) for test results. They are testing my tumor to see if it is KRAS positive. I also have to go have blood drawn for an HLA test (something about T cells). Those results will determine whether I qualify for the clinical trials at the National Cancer Institute (NCI) that I am interested in pursuing.

For the record, Oncologist did apologise and said she was tied up at the hospital these last few days.

Oncologist Incommunicado

I correspond with my oncologist via email quite frequently. This suits me fine, as I am a written-word type person and I prefer to email to phone (except in some cases). She also seems to like email as a communication medium, and replies very quickly. However, this time it is not working. I emailed her a rather important batch of information (concerning my desire to join a clinical trial at NCI/NIH) on Sunday night. It is now Thursday morning and I have not heard anything from her. Yesterday I sent an email asking if she had received my email from Sunday. No reply to that either.

Now I am worried. Has she written me off? Is she angry with me? I need her to order various tests and facilitate the transfer of various slides and tissue. And actually, if I get sck, like Bits of Myself did recently, I need her to care for me. And every day that we delay is ANOTHER day that the cancer in my lungs grows. Yes, I know I delayed for a while myself, but she wasn't knocking on my door with treatment options during that time.

I am scared. I am going to call today and see if I can get anywhere amongst the maze of recordings.

Maybe she's on vacation?

Wednesday, November 5, 2008

Tuesday, November 4, 2008

Election Day!

As a mother and as a cancer patient, I hope hope hope hope hope that Barack Obama wins today. Captain Obvious, Captain Adorable, and I are all wearing our Obama shirts. Captain Obvious tried to vote this morning, but the lines were so long (at 8:30 or was it 8:15) that he had to give up and leave in order to go to work. I am sorta happy about this development because this means when he votes this evening, he can take Captain Adorable with him! So someday my little one can tell his grandchildren he was there on that historical election day...

Now, stop reading this and Go Vote for Obama!

Friday, October 31, 2008

Happy Halloween

Halloween is such fun! Captain Adorable and I went to a party at Ms. Resourceful's house. It was awesome. There were other kids wearing cute costumes, delicious hors d'oeuvres, yummy blood punch and heated apple cider, good Halloween-themed music, a pinata (sorry, don't know how to make the proper accent show up!), bobbing for apples, drawing/coloring bags to fill with the non-candy treats that were going to drop from the pinata, and good company. I always enjoy seeing other children who are around the same age as Captain Adorable. It is amazing how different an 18 month-old and a 20 month-old are! Such a small difference in age means so much. Think about the development taking place in those sweet little heads!

Anyhow, speaking of Captain Adorable, he has been doing more things differently these days. We're teaching him to say please when he asks for something now, which is cute. He says "help" now when he wants help with something. He knows what "cook" means and what "wash" means. His vocabulary is just abounding and astounding me all the time. :)

And now for the really BIG NEWS: both today and yesterday, he asked to poop in the potty and then did it!! (Yesterday twice, but I think that was only because he got so excited after the first one he couldn't squeeze any more out and a few hours later, did the rest.) I am beginning to question why we put diapers on him at all (he wears them to sleep) and I am going to stop using the nap diapers. He is always dry (and we have a water-proof cover on the mattress) and even if he did have an accident, it is during the day and Captain Obvious is not in the bed to get annoyed, so easy to change the sheets. I no longer put the diaper cover on when we go out because he does not need it.

My son is not yet 22 months old and he is out of diapers. I am soooo glad I toughed it out during the huge back-track that was prompted by our vacation in Hawaii.

Yes, in case you were wondering, he is still sleeping in the family bed. He cuddles with one parent or another throughout the night (most often mama). We are beginning to think/talk about transitioning him to his own bed. Actually, that will happen as soon as Captain Obvious gets a few minutes to move a bunch of furniture around. I don't expect Captain Adorable to suddenly sleep in a different room! We will have his bed (maybe just side-car the crib) in the same room as us, but encourage him to sleep more and more on his own.

I love co-sleeping and I am glad that we chose this option for our family. I should dedicate a post to it at some point.

Tuesday, October 28, 2008

Met With A PI At NIH!

Well, we woke to an alarm this morning since we had to be at NIH at 8:30 and goodness knows rush hour traffic was not going to be kind to us. Of course it was also raining, so that made the traffic much worse. Sigh. For once the parents woke up Captain Adorable, instead of him waking up his parents (poor guy--getting woken up to spend his morning strapped into his car seat).

We left at 7:45 and got to NIH at 9:00. Then we encountered the security check point. Quite a pain and rather intimidating. By the time we got inside it was 9:15 or 9:20. My FIL was waiting when I arrived. He was dressed in a suit and had instructed me to wear once as well. His theory is that wearing "the uniform" (his word for a suit) is extremely important. Good thing I have 3 suits left from the days when I thought I would be a lawyer and worked in a judge's office and a law office...sigh. We were waiting because he had somehow convinced a nurse (who is listed as the POC (Point of Contact) for a trial FIL thought might be good for me) there to fit us in, to give us a few minutes of her time to meet me and help evaluate whether I would be appropriate for trials being offered at NIH. The Captains hung out in another waiting room, nearby, but separate. Which is probably good, seeing as although Captain Adorable is the apple of my eye, his presence is somewhat disruptive. (Partly because he is so cute and sweet and partly because he is so very curious and thoroughly inspects every room he is in.)

Somehow we lucked out and got in to see the POC without too much waiting and to my surprise (and my FIL's surprise, and of course he realized it waaaay sooner than I did), her boss (the PI (Principal Investigator) was there as well. Totally super good luck! They were clear that they had very little time for us, so I asked my FIL to do the summary and introduce my case and the reason we were there. Plus, having him talk first means he set the tone for how to speak (or how to tweak their preception of us/me). I was happy that both the POC and the PI were sitting there with the summary of my treatment so far that FIL had emailed them, and felt that they were listening and interested. They were nice, but not gushingly so. The way I explained it to Captain Obvious later is that my current oncologist is kind, but treats me with an I'm-so-sorry-for-you attitude. These people were interested in and paying attention to how to get on with the treatment.

The PI told me a few new things, like: I fit in a certain category of cancer, which is made up of women, who hardly or never smoked, with slow-growing adenocarcinoma. He immediately had 3 trials that he thought would be good for me and told us about them in order of what he thought would be best. All 3 trials are for treatment administered orally. (HELLS YEAH!!!) They have varying amounts/types of side effects...none too bad...but I expect side effects because of course I have accepted the fact that there is a price I have to pay for everyday, no matter how small, it is still a price. He also told my FIL to email him the (weird, half-hearted, to my eyes) list that my current oncologist had put together and he would rank the studies she had suggested! Both FIL and I thought that would be fabulous, as figuring out how to even just evaluate, much less rank these studies is quite difficult. So now I have some homework to do. I have to contact my current oncologist and ask her about certain tests on my tumor, which I did via email earlier this evening. Depending on the results, we will know which of the three recommended studies I would qualify for. Of course at the same time, FIL is going to get the ranked list of other studies with the PI's help and we will see if one of those might fit me better. But right now it looks like I will be going to NIH.

Going to NIH would be great because I can continue to live at my house (quite the understatement, don't you agree) . But I might have to ask people who live near me (my MIL and perhaps one or two other trusted people) to care for Captain Adorable if I have to do certain types of treatments...I won't be able to take him with me every time...although I can see him kind of enjoying going to NIH because we can take the Metro there, or, we will take the Metro instead of driving because Captain Adorable will like it so much more. And of course if I need it, I know I can count on my Mommy to come stay with us, too. But I think she prefers to live at her house, too. :)

Monday, October 27, 2008

The Scent of Apple Crisp Baking

As I type this post, the scent of an apple crisp baking fills my house. It smells fabulous--sweet, cinnamon, apple, lemon, apple...mmmm...

Last Friday Captain Adorable and I went apple picking with my parents, Ms. Resourceful, and her two little ones. It was such fun! Although I forgot the camera, I will never forget the sight of Captain Adorable and Ms. Resourceful's daughter sitting side-by-side in a wheel barrow pushed by my dad, wrapped up in sweaters and coats, each chomping on an apple. We quickly filled our bags with apples (I brought home 34 pounds!). There were Stayman, Enterprise, and Granny Smith. The Stayman were the best for eating there in the field, but we all tasted all of the types. I got some of each to bring home. So, today is Monday, and since Friday I have baked 2 apple pies, one apple gallette, and one apple crisp (Captain Obvious pulled it out of the oven a few minutes ago). I've used 2 pounds of butter in 3 days. Still, the apple-dessert goodness is nice.

My FIL came to visit (along with one of Captain Obvious' cousins) on Friday night and they left on Sunday. FIL was very, very happy about the apple pie and gallette that were cooling on the kitchen counter when he arrived. Made me very happy to see him so excited and pleased. In fact, he was so happy about it, he was even willing to peel and core and slice a few pounds of apples on Saturday night so I could bake another pie.

Tomorrow I am going to NIH for a visit with a doctor running a clinical trial. My FIL arranged this meeting and is going to me there as well. I am releived to have my FIL's help. I am also scared about tomorrow. We will see what we will see.

For tonight I am just going to enjoy the scent and the taste of this beautiful apple crisp.

Friday, October 24, 2008

Pumpkin Bee

Above are two photos of my second tattoo. My Pumpkin Bee tattoo. Because, believe it or not, I do not actually call my son Captain Adorable in real life...shocking I know. :) However, I do call him Pumpkin Bee. Pumpkin because of his red hair and Bee because, well, I am not really sure...maybe because I started calling him my Baby Bee and then it morphed into my Pumpkin Bee. The design was my idea but both my Mom and Captain Obvious had some input into the final, plus the tattoo artist (James over at Bethesda Tattoo) did the final version that went on my body. I especially love the work he did on the wings, the legs, and the eye (OK, I love the whole thing!). I wanted the bee to look realistic but with an unexpected twist and I think the design is absolutely successful. It took two hours and it is pretty sore right now, a day later. I was lucky to have my sweet friend, Deelux, there by my side the whole time, talking to me, and helping me to keep my mind off any pain. Actually, I have Deelux to thank for the tattoo because she recommended the artist, and paid for the tattoo!

I can't wait to see her new infinity symbol tattoo...she's gearing up to join our Infinity Tribe (thanks, Amina!) soon.

Oh, and yeah, as you can see from the pic, my hair is short now. Most of the hair I have left after the huge hair loss is all like 1-2 inches long and curly. The rest was still chin length but it looked really stupid and I was wearing a scarf to go out in public. I had the long stuff cut and now it looks normal. Not the hair do I would have chosen, but, not bad either.

Thursday, October 23, 2008

Infinity Lizard!

Wooohooo! Another tattoo to add to the roll! A friend of mine from law school, LindenTreeIsle, got a gorgeous piece of art on her inner forearm back on Oct. 12. It is a beautiful purple and teal lizard. When I saw the design on her LiveJournal and pointed out that the sinewy curves were an infinity symbol, she asked if that meant that she could join the infinity symbol tattoo club for me. I was overjoyed to answer YES!

Go have a look! It is sooooo nice.

Wednesday, October 22, 2008

A Good Day

Captain Obvious is in Philadelphia for work (boohoo) so my parents came up this week to see Captain Adorable, oh and me too. ;) It is nice to have them here to help me out with my darling active toddler, especially because he is really exploding with words and concepts right now, so they get to see the magic taking place and I get to share this wonder with others who love him and love to talk about him as much as I do!

This morning we left at about 9:30 for the drive up to see my Grandma at her retirement facility in Baltimore. She has her own apartment, and the rest of the amenities are very nice. This was the first time I had really taken Captain Adorable to see her in her own territory (she's been to our house to see him a few times). My little one grabbed Grandma's walker and had a fabulous time pushing it up and down the halls. He entertained himself, his mother, his grandparents, and his great-grandmother that way. He also played the grand piano a bit, with help from my dad, which they both thoroughly enjoyed. When it was time for lunch, he surprised me by gobbling food down as if it were going out of style. (I never think he eats enough...)

Then he fell asleep on the drive home and transferred to bed for an additional 45 minutes. A new friend came over to have tea with me (and my Mommy!) and it was wonderful to hang out with her, chatting, sharing my special tea and tea set, and getting to know her. I also got to hold her gorgeous! sweet! good-smelling! 3! month! old! baby! girl! She was wearing an adorable little dress and shirt outfit, too. Oh, she was lovely! (Can you tell I really enjoyed that?) Once Captain Adorable woke up, my Mom entertained him/played with him and eventually took him for a walk to the playground in our subdivision. The day care kids were there and apparently he and another little boy played together (well, next to each other: parallel play)! How cool!

Our new Obama shirts arrived, then my Mom and I cooperatively cooked dinner and Dad came home (he spent the whole day with his mother) and we all had a nice dinner together. After dinner I checked my blog for comments and there was a rather complimentary one waiting for approval. I finished the kimono I was sewing for Mom (except for the belt) and she cinched the waist band of a couple more pairs of Captain Adorable's pants. (His pants are all too big, plus he doesn't wear diapers, which would hold them up, so at least 50% of the reason I put the cover on him when we leave the house is to hold his pants up!) Now he has more pants to wear than just the 12-18 month sweat pants from last winter, which fit his waist but are a bit short in the leg, around the house.

I am going to get my second tattoo tomorrow. Will post pics soon.

Speaking of tattoos, there are a few of you (Mr. Geometry and his Lovely Wife, Ms. Wildflower, Ms. Breadwinner, and Mr. Bon Vivant) whom I have asked to join us and get inked...what's the deal? How many nudges do you need??? Or have you just not sent me the pic yet? Kisses to all!

Friday, October 17, 2008

Hair and Other News

So much of my hair has fallen out that, starting yesterday, I am wearing a scarf on my head. This makes me much sadder than I had thought it would. I look at photos of myself from last year and golly I had beautiful, thick, shiny, silky hair. Such a nice color too. I'd like to have it back. I remember that I hated the hair cut I got to prepare for chemo so much that I actually said "I wish it would all fall out." Now I wish I had never cut my hair. I wish that my hair would stop falling out (and not just because I've run out of hair to lose!). It makes me very, very sad.

In Other News
Captain Adorable said his first sentence yesterday!!! OK, it wasn't really a sentence, but it included a verb and a noun, so I'm calling it one. :) Here's the story.

We were eating lunch. He was having a quesadilla and some guacamole (he loooooves guacamole). Of course he had abandoned the spoon in favor of his hands. :) Then he showed me his guacamole-covered hand and said "hand! hand!" in a way that lets me know he wants me to wipe his hand for him. I did not want to clean it off since I knew he was going to comtinue eating and I didn't want to have to clean off his hands after each bite! So, I told him to just continue eating. Instead, to my surprise, he lifted up his shirt and rubbed his guacamole hand on his belly! I had a little laugh at that, but got a paper towel (my wasteful, anti-green addiction), and wiped off his belly, hand, and the bit that was on his shirt and sat down. He then looked at me with his shirt in both hands, saying "shirt? shirt?" and then "take, take." I asked him if he wanted me to take off his shirt and he said yes, so I did.

Like I said, not reeeeaaaaallly a sentence, but good enough for a mama like me!!

Wednesday, October 15, 2008

Pissed Off

Two days ago (Monday) in the afternoon, Captain Adorable and I walked to a local playground. I like going there because it is so close to the house that Captain Adorable can walk, thus adding to his daily exercise and helping him to fall asleep at night. Plus we can walk about half the way through on a jog path, where we see lots of birds and squirrels.

It was a lovely day, and I had brought along his little running bike in the wagon, figuring if he wanted to practice on it, the big field where the playground is located would be perfect. As soon as we got there, Capt. Adorable explored the playground, as usual. We were the only people there. I was on the swing and he was having fun running around climbing on the playground equipment. Then he went down the slide. At the bottom was a puddle and it got all over his pants. I did not think much of this, but walked over to clear the water out of the slide before he went down it again. I quickly scooped my hand into the bottom of the slide, pushing the water off.

At that moment I realized it was urine. Some fuckhead had pissed in the bottom of the slide, guaranteeing that anyone who went down the slide would end up in a puddle of urine. Fucking wonderful. Now I had this idiot's pee all over my hand/arm and Capt. Adorable had it all over his pants/shirt. I was sooooooo angry! Now I had to get myself, my son, the wagon, and the bike home as soon as possible to wash this nasty stuff off! I did not yell at Capt. Adorable or anything, but I know I was radiating anger. He was completely confused as to why we were leaving in such a hurry and of course did not want to come along like a cooperative little boy, which upped my frustration level quite a lot since I did not want to touch him with my pee hand.


I talked to a couple of other parents and I guess I am going to have to inspect playground equipment before letting Captain Adorable get on it as this seems to be a known problem. As overly dramatic as it sounds, my faith in humans has been lessened by this experience.

Friday, October 10, 2008

My Little Boy

Captain Adorable is 21 months (and a few days) old now. He is really hardly a baby at all any longer (except for when he falls asleep on my lap, perhaps); I have to face the fact that he is now my little boy. Over the last few weeks he has been putting more and more things together. On Wednesday I showed him (which I have done before) how to go down the slide sitting on his butt instead of lying on his belly. Starting on Thursday, sitting is the only way he goes down the slide now! In Hawaii he started saying the word "pasta." Tonight when he saw the ravioli sitting on the counter waiting to go into the water, he identified it correctly! He asks for milk or juice or tea (I make him mint tea, add raw honey, and put it in his sippy cup warm but not hot) or water as his preference dictates. He is able to verbalize more and more about what his likes and dislikes are.

Potty learning is back on track. Almost every pee goes in the potty, he tells me when he has to go to the potty, and he is now going poop on the potty 25-3o% of the time. (Thank goodness!) I have found that he is better about staying dry in public than at home (weid, but I'll take it) and Captain Obvious has been teaching him to pee standing up! Which means he stands on the toilet seat...sigh...I'm not totally on board for this method, especially because it means more parental interaction (you have to hold him leaning over far enough so that it goes into the toilet) and also because I don't think we should teach him to stand until he is tall enough to stand on the floor (or even a step-stool) and make it into the toilet on his own. Plus, it is really a great idea for a boy who is under 2 years old and is not cognizant of the importance of aiming to be peeing in a position where aiming is really important?! But I can also see this coming in handy when out and about means we run into a very dirty toilet...

He is much more interested in the clothes he wears and of course correctly identifies the various garments now. In addition, he is more interested in wearing clothes with something on them that he likes (a train, for instance). He can put his own shoes on (well, only his Crocs and usually on the wrong feet, but whatever!). Just this morning we met my sweet MIL at the mall and shopped for fall/winter clothes for him. He is now definitely the best dressed kid on the playground! Such cute stuff!!!

He had such fun with his Grandma at the mall (lots of playing and giggling!) that I feel comfortable asking her to come to our house to stay with him while Captain Obvious and I go out for a few hours in the evening...a Very Big Development for me. I will update with news about that (if it ever actually happens.) Of course we will always come back before bedtime.

In bed he is now aware of pillows and covers and demands that he has his own pillow and has the covers on, even if it is too warm for covers (so I just put the sheet over him). Silly guy always slips off the pillow, so as soon as he is asleep I take the pillow out of bed before I go downstairs to hang out with Captain Obvious).

He offers me sips of whatever he is drinking and makes cute little fake drinking noises while he puts the cup into my hand to encourage me to take that sip. He is now aware of burps and farts and correctly identifies them. (He used to always identify farts as "poooooop!") He happily tells me the sound that whatever we are talking about makes (bird = "teeet teeeeet!" (which means tweet tweet), dog = wooof woof woof, police car (or ambulance or fire truck) = waaaawaaawaaawaaa). He points out planes in the sky, trucks on the road, cars in the parking lot, squirrels on our walks, birds everywhere...he has just opened his eyes to the world around him and he is excited by it and wants to talk about it all the time!

The cutest new development is he now asks for kisses! If he hurts one of his sweet little fingers (or hand or elbow) he comes to me, holding up the injured limb and asking "tiss, tiss" until I kiss it for him. One of my favorite parenting duties!!

Wednesday, October 8, 2008

One Year Of Blogging

Well, well. I started blogging on Oct 8, 2007. Today is Oct. 8, 2008. I have been through a lot during this year: some good things (like going to Hawaii!) and some bad things (like going through chemotherapy). I have changed the way I view some things and have had other views completely cemented. Writing in this blog is enjoyable, especially because there are readers besides me!

I do not live in a state of constant sadness (or do I?) but cancer is always in my mind. I think about it a lot. There are so many reasons cancer affects me everyday. It has stolen so much...if I go into an example it might end up an endless, endless list... (for instance: I'll never have another child, so never have the home birth I planned, and never get to nurse my baby till we are both ready to stop. I'll never chose another name for a child. I'll never get to be pregnant again. I'll never get to have a belly cast or do a henna tattoo on my pregnant belly. My son will never have a sibling. My parents will never have another grandchild with my genes (maybe a good thing, not to give my genes to another generation). I will not get to share the joy and rejoicing of having conceived a child together with my husband again. I will not use the carriers I sewed for my son. I could go on. And yet, I know this is nothing compared to the sorrow of wanting and not being able to have a child and I am aware that I am incredibly lucky to have had the experiences with pregnancy, birth, and parenting that I have had.) Perhaps from the above italicized example you can extrapolate how I feel about what else cancer has stolen from me, and from my husband, my son, my parents, et cetera. And I guess that's something has has happened to my viewpoint: I see clearly and intensely what has been robbed from me AND YET I see clearly and intensely what an amazingly wonderful (blessed, whatever your take on the significance of that word) life I lead.

I do not want to attribute anything positive to cancer, so if anything positive has come from the fact that I have this disease growing inside my lungs, those positive things come from within people (me and others), not from the disease. I do not think that the cancer has made anyone love me more, but perhaps the idea of someone you love suffering and fighting without much hope makes others feel love more intensely. Like for instance, the way my aunt and my sister got tattoos touches my soul. These two have loved me for a long time but there was never any reason to show it, because, well, there was no immediacy (on my part too, not trying to blame them for not doing things that I also did not do--it was the same for us all). But now that time is so magnified, we have the opportunity to make the grand gestures, like getting a tattoo. And yeah, grand gestures are meaningful and a tattoo will last as long as its wearer, so that's quite a gesture! :D

The truth that I cannot escape, my friends, is that I am going to die of cancer. Not tomorrow and not next year, but before my normal life expectancy. No clinical trial, drug, or chemo is going to save me. No alternative treatment is going to either. These treatments will only stabilize the cancer (i.e. make it stop growing) but I am not going to go into remission. There is no magic bullet.

Tuesday, October 7, 2008

Treatment News

Yesterday (Monday, October 6) I went to see my oncologist here at JHH (Johns Hopkins Hospital). Captain Adorable stayed in the waiting room with my sweet MIL. (Poor guy is sick--wonder if that is related to camping at all? Perhaps he was not warm enough?) I was happy because he was close by, but it was nice not to have him with us, so we could talk to the oncologist with no distractions from our little one. Captain Obvious and I had discussed in detail exactly what we wanted to ask her, so we had an agenda going in.

We both went in feeling pretty negative towards her and we came out not feeling as bad as before. She answered our questions and we were satisfied with her answers. She also decided it would be good for me to have a quick CT scan (without contrast) to see if the tumors in my right lung are still growing. I was able to do that right after the appointment, and she called later that evening (about 6:30) with the results.

So, here's the upshot.

Treatment options, Plan A and Plan B?
Plan A would be in the tumors are stable (not growing) on Tarceva. If they are stable, then the plan is just keep taking Tarceva till it stops working.

Plan B is if the tumors are not stable. Then we stop Tarceva and move on with other treatment. Standard of care treatment would be chemo (it is called Alimta, not Ultima (or Altima) as I previously wrote in this blog). However, if I want to pursue a clinical trial, now would be the time to do that. She would help us to find a trial appropriate for me based on the type of trial (she recommended Phase II), the type of treatment (chemo trials are not really what I am looking for!), and geographical location (now the fact that Captain Obvious and I have family all over the country suddenly looks like a big advantage instead of just making it difficult to visit). :)

The results of the CT scan showed more growth.

I did not take Tarceva this morning. We are now looking for a clinical trial.

Friday, October 3, 2008

I Like It and I Don't

Captain Obvious is planning to take Captain Adorable camping tomorrow. I like this idea (Captain Obvious loves camping and Captain Adorable loves it outside) and I don't (how will I possibly sleep without my pumpkin bee and my sweetheart?!). I like it (oooh I could take a bath! I could sew! I will get to go out with my friend!) and I don't (oh it will be so much to get packed up before they leave...). I like it (maybe I will read in the living room!) and I don't (will they be warm enough?!).


Thursday, October 2, 2008

Just Watched the VP Nominee Debate

I am absolutely for Obama. According to what I have read, his leadership would mean my best shot at continuing to receive good (or better than good) health care, which is what I need to increase my chances of long-term survival. It is not the only reason I respect Obama and would like him to be the next POTUS, but it is a big one.

Not surprisingly, I am absolutely against McCain. I think his leadership would take us down the same path the Bush administration started this country on and this path sucks. In addition, McCain's proposed health care plans are frightening. They scare the pants off of me, anyhow. Cancer is expensive. Very, very expensive.

This is my blog and I'll make political comments if I want to. ;) This blog is not about politics, but politics affect every aspect of our lives, and for me health care policy is number one on my list of Policies On Which To Evaluate Presidential Candidates. (The list also includes women's rights, war/peace, energy, education, environment, gay rights, et cetera...)

Wednesday, October 1, 2008

I Asked My Husband For A Divorce

I love my husband and I asked him for a divorce last night. I feel guilty that my disease is trapping him too. The disease and the treatment makes me (even more) unattractive, unhappy, and (physically) weak. I will never pass the Bar. I will never bring home an income. I will be a financial and emotional drain for him until I die. I will die before him (provided he lives to his natural potential) and leave him a widower with a minor child with very little life insurance. He has to provide for me and for the financial demands of my treatment and then will have to care for and educate our son with no help from me. He deserves better.

He said no, in case you were unsure.


As I wrote before, I am very disappointed with the amount of work that I, as a cancer patient, have to do to care for myself. My whole life I have known not to trust doctors and to always do the research for oneself...and yet, as incongruous as it may seem, I did expect that in this situation I would get much more help and information from doctors. I feel helpless and over whelmed. Thank goodness for Captain Obvious and for my FIL, who is helping us so much with this task.

Looks like maybe we need to go talk to another oncologist guy in New York now at the Sloan-Kettering Cancer Center. Supposedly he can really advise us on clinical trials. I feel frustrated with the need to make yet another journey to see another expert. How many experts are enough? Can any of them really help me? Am I just effing doomed?

Yes, I think the answer is yes.

Just What I Was Thirsty For

While I was in Tennessee, I got to spend time with several old friends. These are people I have known for a long time (one since freshman year of high school, so for over 20 years (knock me over with a feather!)) and people who remember me when I was slender and single and had long beautiful hair. Of course Captain Obvious remembers me that way too, but there is so much elese between is nice to talk about old times (times before I even knew Captain Obvious!) with people who were there too. We talked about good times and sad times. I enjoyed myself thoroughly.

I was refreshed and calmed by the marvelous Southern-isms that fell casually from my friends' mouths. For instance: I made a cup of tea for my friend, and when I asked if she'd like sugar, she replied that I could just stir it with my finger and that would make it sweet enough for her. I could have floated with delight! I can't remember the other really good example that my old high school friend said, but I loved it too.

My thirst for sharing and talking and giving and ... (well, sorry if this is cheesy) loving was slaked (at least, for now). :) I am definitely going to have to seek out their company when I am in Tennessee again.

As weird as it is for me to write this...I miss the South. (I know there are plenty of bad things that I do not miss, but oh there are plenty of things that I do miss...)

Potty Learning

Our progress with potty learning took a big hit in Hawaii. Those who have been reading this blog may remember that Captain Adorable was dry almost all the time with a few accidents here and there before we left. He made it all the way from Baltimore to Hawaii with no pee accidents (he did poop during our layover in Houston, but he did it in a diaper he was wearing at the time--very convenient!). All through our time in Maui (oh, Maui, how wonderful that was!) he was on track and peeing and even pooping in the potty. However, after a few days on the beach in Oahu, going to the potty dropped by the way-side. He started having pee and poop accidents all the time. Every time. Sigh. Of course, he did this in front of my brother and my SIL, who already thought he was dirty...I felt sad and frustrated that my son was losing his skills that we had both worked hard for and I felt sad and embarrassed that my brother and his wife thought of my son as dirty and filthy.

While we were in Tennessee, Captain Adorable stopped using the potty because, well, the toilet seat in my parents' house is weird and it caused a situation where his butt got pinched (one morning while I was trying to get him to sit on the potty seat he looked me in the eye, pointed to his potty seat (which he was sitting on) and said emphatically "Pottyseat bites! Bites!" I stopped even trying to put him on it. He wore Pull-Ups the most of the time we were there...and the times I did put him in undies there were always accidents. I became more discouraged.

In Houston he started to fight sitting on the potty. Or he would refuse to pee in the potty (even when I knew he had to go!) and would then peed in his undies as soon as he got off the toilet. I did insist that we try to keep him in cloth instead of going to the Pull-Ups and more and more often (including the incredibly (hour plus) long wait for the oncologist) he was dry.

Here we are, back home again, and I am once again accepting that I have a bunch of work ahead of me before we are going to get back to where we were when we left for Hawaii on August 26. However!!! Good news! Both yesterday and today he POOPED IN THE POTTY! So I am feeling hopeful again, despite the 4 pairs of peed-in undies today. Weirdly, he only had one accident while we were out of the house (we went to the Baltimore Zoo today) but 3 pee accidents here at home. Anyhow, I am once again prepared to expect accidents. This helps me to be patient and to persevere. I trust that Captain Adorable Can and Will get back to using the potty.

Some Catch Ups (From Maryland)

I am going to write a few updates here...but under different headings so that I can keep things separate..and perhaps more organized and shorter. :)

I am at home in Maryland. Captain Obvious has been doing a bunch of research for me on clinical studies. I am very grateful to him because I find it exhausting, as I have mentioned before on this blog. Once again I am disappointed in the medical system. Here I am, with a serious illness which will end in my death (not in a cure). The goal here is to allow me to live as long and as healthily as possible. Why is it that these expensive, super-educated oncologists just can't seem to do this basic legwork for me? Why is it that I (or my darling husband) have to take on the task of educating ourselves and wading through the system to find what we hope is the best treatment for me? Honestly, why can't the medical professionals do this? Why do we consult them at all? I suppose you can tell from the above that I am feeling a bit disgruntled.

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?