Thursday, June 23, 2011

Well, Crap. (ANC of 200)

Yesterday was a day full of doctors & dentist appointments. Sam had three baby teeth pulled. (They were preventing his permanent teeth from coming in.) He also had a check-up w/his pediatrician. In the midst of it all, we stopped by the hematologist's office so I could get some blood work done.

We were checking to see how things looked after a month of no medication/treatment. As 1500 is considered the low end of the normal range, I'd been a bit bummed that my last neutrophil count was 1100 at the end of May. I was hoping to be above 1500 this time, maybe even above 2000.

In this doctor's office, they have this cool machine which processes my blood & gives us data minutes later. When the phlebotomist looked at the numbers, she first mentioned a 2.8. For a second, I thought she meant my neutrophils were 2.8 (which would be 2800). I said something about that making us happy.

Then, she clarified that 2.8 was my total white blood cell count. (That number is supposed to be above 4.5.) My neutrophils were at 230. Since anything below 500 is considered life-threatening, that makes us less happy, I said.

I haven't had numbers that low since early September. Since that time, my numbers had been over 1000 for the past eight months.

The doctor passed through the room (I have an appointment w/him next week on the 30th) & said that it really wasn't too surprising and that I shouldn't worry. While I cried about 1100 last month, I didn't have it in me to worry about 200. Maybe when it is this bad, I feel there is no point wishing it were a little bit better.

The doctor asked me to give myself a shot (in the stomach) of a medicine called Neupogen which is supposed to help me create neutrophils. I have had good results w/this medication in the past (sometimes remarkably good) but haven't been able to maintain good numbers w/or w/o this medicine alone. (I hadn't taken it in over a year.)

The doctors seem to think I'm doing an alright job of making Neutrophils but that something has been "knocking them down" or attacking them. (Generally, they blame my lymphocytes, the white blood cells that are supposed to protect me against viruses.) The treatment I had almost a year ago, a treatment they give to people who have had organ transplants, was in hopes we could get this pattern of my body attacking my body to stop.

It didn't look like it had worked to me at first but then it looked like it just took a few months to work. I didn't want to take one of the medications (Cyclosporine) as I'd been told by other hematologists that it was toxic. In the hospital, they said, "It is toxic & you need it." I agreed to take it as part of the treatment (which was supposed to be a five day treatment).

I didn't know they were going to expect me to leave the hospital taking it & kept wondering when I could stop taking it. Eventually, per the request of a hematologist at UCSF, I agreed to taking it for a year. Now that I've been off it for a month & my numbers have plummeted, my hematologist is talking about possibly asking me to start taking it again. I don't know how well it will work on its own as my understanding was that it was part of a broader treatment but I guess we'll see.

So, I'm fine, really, I think, but I am back to having to decide if I will be a guinea pig for them again. Not expecting you to understand (as the doctors don't really seem to understand). Just sharing what I think I understand them to be saying. This isn't new but apparently it isn't over either. Oh well, I'll just climb this dune & see what we see when I get to the top of it.

As always, thanks for caring.

Love,

Mary

Thursday, June 16, 2011

Coming of Age with Harry Potter

About two weeks before Sam was born, the first novel in the Harry Potter series was released (in the UK.

It didn't make it here until after he'd turned one).

I didn't think I was interested. I didn't think I cared. But, at some point, when Sam was three & we were living in St. Louis, I decided to find out what all the hubbub was about & read Harry Potter & the Sorcerer's Stone (I).

The movie by the same name was released just before Thanksgiving when Sam was four. Somehow, he & I ended up seeing it at the movie theater with my parents. I think we all thought it was a kids' movie. While there were very scary parts, because I had read the book, I could assure Sam, "They can't kill Harry Potter," and we made it through.

The second movie, The Chamber of Secrets (II), came out a year later (when we were living in Iowa). I'd spent that year as a single mom, at a new job (the biggest job of my advertising career) & hadn't gotten around to reading the second book.

One Friday night, after a long week of school & work (Sam was in kinder-
garten now), I took him to see the movie. This is the one where they introduce the giant spiders.

It was a bit much. Sam was covering his eyes & saying, "I want to go home."

When it looked like Harry was about to be killed by a basilisk (&, because I had not read this book, I could no longer reassure him), we left.

The next morning, I was telling a friend about how we'd had to leave before the end of the movie. Sam said he wanted to try again. I figured if he was up for it it would be better to make it through than to leave it hanging over our heads. We took our neighbor, Sam's friend, a little boy named Jon (who is a year younger than Sam) with us. This time, in the daytime, we made it through. Thankfully, so did Harry.

Previously, Sam had seen Lord of the Rings - The Fellowship of the Ring (albeit on a small screen, in small doses, in the daytime, at home). And, a month later, he made it through Lord of the Rings - The Twin Towers.

When I wondered out loud about why, my brother hypo-
thesized that the "good guys" & "bad guys" were more clearly defined in LOTR & that maybe kids in peril, kids (Tom Riddle) out to get other kids was what was upsetting to Sam about the Chamber of Secrets.

While we were waiting for the next movie to come out, our friend, Janice introduced us to the audio books narrated by Jim Dale. We started listening to them & over the course of the next several years, we listened to The Prisoner of Azkaban, The Goblet of Fire, Order of the Phoenix, Half-Blood Prince & Deathly Hallows together. We enjoyed them a lot.

Sam was almost seven years old when the third movie was released. (I'm not sure how many of the audio books we'd made it through at that point.)

We'd moved to Chicago & were a family with Cameron by then. The three of us went together to see The Prisoner of Azkaban (III). We were introduced to Sirius Black in this movie. I remember us enjoying it very much.

Sam was eight when The Goblet of Fire (IV) movie was released. The three of us must have seen this one in Chicago too. I didn't remember much about it off the top of my head but see it is the one with where they have the Triwizard Tournament.

It is also the one in which Cedric Diggory is killed & Harry & Voldemort face-off in a grave-
yard.

The release of The Order of the Phoenix (V) lined up nicely with Sam's 10th birthday. We'd lived in California for about a year at the time. We incorporated a viewing of the movie into our plans for his birthday party.

Harry & his friends start Dumbledore's Army & fly on thestrals to a fight at the Ministry in this one.

The Half-Blood Prince movie (VI) came out almost exactly on Sam's 12th birthday. However, we were at a family reunion in NW Washington at the time. We waited to watch the movie until we returned home so we could watch it with Cam. (He'd had to leave the reunion before us.)

Because we knew the story, we kept telling Cam, "You won't believe what happens in this one." (We celebrated Sam's birthday a few weeks later.)

The next year, between our trip to the Midwest & a series of visits by family & friends, Sam managed to turn 13 w/o a party. So, when The Deathly Hallows - Part I (Movie VII) came out, it seemed like the perfect opportunity to have an unbirthday party.

This year, "the epic conclusion of the world-
wide pheno-
menon," Deathly Hallows -Part II, (Movie IIIV) is being released the day before Sam fourteenth birthday. So, we're building it into a party again.

It has been neat watching Sam come of age alongside this coming of age story.

We're excited to watch the finale.

(Although, I'm even more excited to see what the focus of Sam's birthday party will be next year.)

Thursday, June 09, 2011

My Requests for Lyle Lovett

Tonight, Cam's taking me to see Lyle Lovett. I'm compiling a wish list of songs I'd love to hear him play & thought I'd share my requests with you.


If I had a Boat - "If I had a boat, I'd go out on the ocean. If I had a pony, I'd ride him on my boat. And we could all together, go out on the ocean. Me upon my pony on my boat."


Bears - "So, meet a bear & take him on out to lunch w/you, even though your friends may stop & stare... It just don't come not better than a bear."


LA County - "And the lights of LA County, looked like diamonds in the sky."


Fiona Live (Clip) - "Way down yonder, on the bayou, there lives a little girl-o..." "Ehhhh! "Oh you better not cross her. You try to boss her. Then, you better duck mister. Here come a cup & saucer." "Eh-ee-ehh!"


She's Already Made Up Her Mind - "She said something about going home. She said something about needing to spend some time alone. And she wondered out loud what it was she had to find. But she'd already made up her mind."

"There is nothing so deep as the ocean. And there is nothing so high as the sky. And there's nothing unwavering as a woman when she's already made up her mind."

La to the Left - "My mother was good to me. How in else could she be?"

Old Friend - "Put your head down on my pillow & put your hand on me & hold on. Hold on."

Flyswatter/Ice Water - "With you here to guide me, I cannot fail."

Just the Morning - "There's nothing here to be afraid of, it's just the morning."

Private Conversation (Clip) - "That man she left behind her was 2000 miles away..." "Ehhhh!"

Smile - "Smile, though your heart is aching. Smile, even though it's breaking. When there are clouds in the sky. You'll get by."

North Dakota - "If you love me, say, 'I love you.'" "If you love me, take my hand."

I love many of his other songs too but these are some of my favorites. Maybe, after tonight, I"ll have some new favorites.