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!