Are we there yet?

I was diagnosed with ADD about 12 years ago.  Not ADHD, mind you.  There is no hyperactivity component whatsoever, just a attention system that is out of whack.  And I think this is why I am an incredibly useful person in an acute crisis situation. Funerals are my specialty.  I cowboy up, I do what has to be done, I do not cry, I am goal-oriented - I dare say I am Cylon-esque in my focus.  I can be Wonder Woman successfully for about a month, and then I am ready for something else. Long haul?  Yeah, not so much.

Guess what?  A month of this crap was up a month ago.  I'm not so useful anymore.  I'm damn sure not as entertaining.  I am bitter and angry and tired and hateful and SO ready for this to be over.  If self-pity were an Olympic sport, I could medal for the USA.  I am in control of absolutely nothing, and I hate that.  And if one more person tells me that God only sends us what we can handle and that He knows what big shoulders I have, I am going to point out in no uncertain terms that She has me confused with someone else - I am the one with the big ASS.

Nathan is struggling.  Here's what I unloaded on Hope via email yesterday:

N had a horrible day at chemo yesterday - Dan called me at 10:30, and they were both wrecks.  First off, N had lost just over 3 pounds in a week.  Then, his port was blocked, so they had to stick his finger for the blood draw, and he was dehydrated, so that was awful.  Then he showed them the enormous canker sore inside his mouth, and they scraped it for a tissue sample to make sure it's not the cold sore type of herpes - TWICE.  Then while they did the physical exam, they noticed that not only does his left eyelid not close all the way anymore due to the tumor, his eyes were pink and gunky, so they diagnosed pinkeye.  He had cried three times by the time Dan called me. 

As it turns out, it's not herpes, the pinkeye antibiotic is working, and N is learning to drink water like I drink Diet Coke.

It just sucks right now, and I HATE telling you all that because you all have been some every kind of wonderful, and we get tangible and intangible reminders of your love and concern and support every week, and I need to focus on all the good that has come out of this.  It's just that lately, I have not been able to do that.  I am considering putting up posters around town that say "Have you seen my sh*t?  'Cause I have lost it.  Call 1-800-THIS-SUX."

This poster is pretty awesome, too.

I think I need to have dinner with some friends.  Maybe Ben and Jerry or Big Olaf.

Man down. Send help.

Nathan is losing his hair.

You know how something can be right in front of your face, and you still don't see it?  I have been not seeing this development for a couple of weeks, and yesterday, I couldn't not-see it anymore.  More to the point, neither could Nathan.

It was a rough, rough, rough, rough night.

For a chemo patient, hair loss is an unmistakable sign of your other-ness.  You're not like everyone else who is healthy.  You're different, very obviously so.  And for a chemo patient in middle school, being different can be a fate worse than death.  This is what is weighing most heavily on our boy's mind, the fear that he will be a target for mean kids.

As a teacher, I know that some of those mean kids also feel different or ugly or left out or just plain wrong.  They try to cope by drawing attention to others whose brokenness is more visible.  "If everyone is looking at that kid," they figure, "they're not looking at me and at everything that is wrong with me."  And as a teacher, I feel for them.  Middle school sucks, their brains are not fully formed, they are trapped in a hurricane of hormones, their families don't understand them, yadda yadda yadda.

BUT.

As a mom, if some mean kids picks on MY kid?  I hope God has mercy on them, because I sure as hell won't.

So, this is one of the hard days.  Rationally, I know that the staff at Nathan's school is going to do everything possible to ease his way during this part of the journey.  I know that he has good friends who are his friends, no matter what.  I  know that, given the chance, most kids will rise to the occasion and do the right thing and treat his balding melon as no big deal.  But I am still scared, and so is Nathan.  So,  I'm doubling up on my prayers and asking Jon Jetton to watch over my boy - he walked this walk, and many of you walked it with him.  I'm asking for the rough places to be made plain.

And if they're not, I may be back to ask for bail money.

No news is good news. Really.

So Elizabeth and Melissa have both let me know that while it may have been OK for me to be a slug about keeping in touch with people in my pre-blogger-celebrity days before Nathan was diagnosed, I now have  a fan base  an adoring public  a compelling reason to keep my friends informed about how our journey is progressing.

So here's how it's going.  I worked last year with a woman who was battling some pretty heavy-duty personal and professional issues.  And regardless of what new fresh hell visited her on a given day, her standard response to "How are you?" was "I am BLESSED and HIGHLY FAVORED, my SISTER!!" That is how we're doing.  We are ridiculously blessed and highly favored.

Nathan has completed 5 chemo treatments, and his side effects have been as minimal as you can imagine.  On Nathan's I-Feel-Like-Crap-o-Meter, getting braces beat chemo side effects by leaps and bounds.  He has not lost the first strand of hair, and according to the nurses, if it hasn't happened by now, it won't.  Nausea makes a half-hearted appearance infrequently, but it retreats in the face of meds within a few minutes.  Nathan's experienced a little loss of appetite, and he lost of couple of pounds one week, but we have discovered Carnation Instant Breakfast and whole milk, and that is a hit (regular dinner vs. chocolate milkshake?  hmm, let me think about this...).  The cocktail Nathan receives can cause some hearing loss, but he passed his first audiogram yesterday with flying colors ("superior hearing," thank you very much, so there will be no more of this "Sorry Mom, I didn't hear you tell me to ______.")  He is having the easiest imaginable ride through Chemoville, and we are shocked and awed (but in the good way).

As for Dan and me, our ride is a little more like a roller coaster.  On up days, we look at Nathan, and we shake our heads in amazement at our Teflon boy and his ability to always, always see the bright side of any situation.  On up days, we open envelopes stuffed with gift cards and Mass cards and thinking-of-you cards, and we marvel at the thoughtfulness and generosity of our friends.  On up days, we hear from characters from our past lives who bowl us over with love and support and brisket and origami cranes and the greatest hits of the 80s and prizes of all shapes and sizes, and we wonder what we ever did in those past lives to deserve such enduring friendship.

Then there are down days.  On down days, Grouchy, Bitchy, Impatient, Thoughtless, Selfish, Self-Pitying, and Congested stop by, and they are nowhere near as fun as the other Seven Dwarves.  On down days, we poison the pot of what-we-have with toxic amounts of what-we-don't-have.   On down days, we forget that we are blessed and highly favored and loved to pieces by all of you and by the One whose strength is made perfect in our weakness.

Those down days are fierce, but they will be no match for the latest elaborate black-op our Angels have cooked up.  Next weekend, Dan and I are headed to Cedar Key for the weekend - without the kids!  The covert team behind this surprise has arranged for us to stay in a friend's home and eat at the best spots on the island, while Matt and Nathan hang with a Big Cousin, and Clare heads to Camp Nana & Papa.  I'm so excited, and I just can't hide it - honey, I am all three Pointer Sisters rolled into one.

So, that's how we're doing.  How are you?

Maybe he IS Iron Man.

You know how you can tell when it's the day Nathan has had chemo?  You CAN'T.  Seriously.  We have just returned from dinner at Applebee's (danke, Cathy and Carsten! xo), where he put down his usual chicken tenders, fries, and Sprite - and as I type, he is packing his lunch for tomorrow: "Um, can I bring some of those chocolates to school? Tell your friend they are really good!"  (thank you, Kara! xo)  He seems to have a cast-iron stomach so far, and from what the nurses have told us, if the drugs haven't made him sick yet, they probably won't.

All his numbers looked good again today, and especially for the future Dr. Kirkpatrick of Vienna, Virginia, here's a little more detail on what the doctors look at and why.

* Hemoglobin: This is the protein in red blood cells that's full of iron and carries oxygen throughout the body.  Patients undergoing chemo need to have super-efficient oxygen transport because lack of oxygen actually stimulates the growth of the cancer cells and makes them resistant to the chemo.  Weird, right?

* Platelets: These are the little sticky fellows in blood that make it clot - especially useful for boys like Nathan who regularly run into things lead an active lifestyle.  They split and reproduce quickly in order to make new cells, and that makes them susceptible to the effects of chemotherapy.  These drugs work best on rapidly dividing cells.  This makes chemo effective on cancer cells, but other rapidly dividing cells (in your blood, hair, and the lining of your GI tract) can end up as collateral damage.

* Neutrophils: The Marines of the bloodstream, these bad-ass white blood cells are the first ones on the scene when infection hits (can you tell the boys are playing "Call of Duty" while I'm blogging?)  If there is a major malfunction with Nathan's white blood cells, he'll be far more likely to pick up infections - and that could mean hospitalization and postponement of chemo to allow him to get better.

So basically, a good blood count means that Nathan's body is repairing itself sufficiently between chemo treatments.

Dan tells me he managed to get a few photos today - look for them this weekend, along with more Q & A.

Have we told you lately that we love you?  That's not just the 2-for-1 Applebee's happy hour talking.  We really do love you.

Nathan 1, Chemo 0

We were dreading this weekend and the possible side effects that might make an appearance.  And guess what?  Aside from a little jaw pain and fatigue from the vincristine, Nathan is F-I-N-E.  No nausea or vomiting or GI issues at all.  He is, in fact, eating like a standard issue 13 year-old boy, (i.e. "Is there any more pizza??" "Hey, is that Chex Mix??"  "Where did the brownies come from??" "If Clare isn't going to finish that, can I have it??").  We know that every week will be different, and this may be only a temporary reprieve, but you know what?  We'll take it.

And now, reader questions:
Q. Isn't ACH a depressing place?  All those sick kids...
A. Not just no, my friends - HELL, NO.  I am filled with gratitude every time I see a child at ACH because he or she is receiving the best care possible from compassionate and skilled people who are dedicated to healing little ones.  Of course, I am also the rare mommy who did not cry when her baby received shots  and howled - I thank God I live in a time when my child can be protected from diseases that used to kill children.  What makes me cry is thinking of the kids who need medical care and don't receive it.

Q. Can we see a photo of the actual chemo process?
A. You bet.  We were a little slow on the draw last week (thanks, Xanax!), but this week, Dan is planning to take photos and show you how not-scary this is, compared to what the imagination can drum up.

Q. So, how about the hot oncologist? You're taking photos of her, too?
A. As long as she's cool with it.

Thanks for keeping us company - keep those prayers and good thoughts coming!
MA