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.